Large Intestine Removal

Has anyone ever had their entire large intestine removed? Doctors are planning to remove mine, and rehook the end of the small intestine to the rectum. I suffer from colonic inertia. Whats life like without a large intestine? Will I lose a lot of weight, will I have to change my diet around? Any details would be helpful. So far I know that I'll be going to the bathroom a lot.

And for curiosity, I'm 18 -- so I'm quite young.

[eddiecic]

[eddiecic]

My wife, who is 53 years old, just have this operation for the same reason, colonic inertia.  You seem quite young, but I guess it can occurr at all ages.  It seems to be more common in women.  Anyway, it has been five weeks since my wife's surgery.  They did this using the laparascopic method, which significanlty reduces the amount of cutting, scarring and recovery time.  She had a little trouble with her remaining bowel waking up, so wound up back in the hospital the week after her surgery.  Now, she is doing pretty well.  It seems like some foods pass through her very quickly, so she is learning what she can tolerate best.  She is active again and played 27 holes of golf this past weekend.  From what I have read, she should be able to return to a normal diet over time.  Good luck with your surgery.  I am sure you will be fine.

[iAmanda]

Eddiecic
Thanks so much.
It can happen at any age apparently. I'm not sure if its uncommon in younger women though. I hope I can have the laproscopic procedure myself. I had a laproscopic procdure last year for diagnosing the source of my pain (they first thought it was endometriosis) and I recovered quite quickly from it.

[debbiebear]

I had this surgery 2 years ago.  I did not have laproscopic, but did well otherwise.  I did lose quite a but of weight in the beginning and did not have food pass very quickly.  I find not that food does pass very quickley.    I am having some problems now with mucosis ? in my small intestine.  The small intestine biopsy did     not show any cancer.  The gastro drs have said that meds can help with the mucosis which they told me is swelling of the lining fo the intestine.   My bowels are loose all the time.    Another subject that is not so good to speak of is gas.  It is horrible and it does not mattle what I eat.     I am 50 years old.    I do whatever I want, just have to have a bathroom near :)
Debbie D

[electronica]

I had my large intestine removed in 1998 and am now 41 - I had ulcerative colitis.  I now have to move my bowels at least six times/day. Eating late at night is not a good idea, because the small intestine will keep you awake.  when I eat by 7:00p, I wake up once per night. Ensuring that you know where a bathroom is essential.  Life is not much different aside from the frequency, which can be difficult when you are at someone's house with a big group and have to "poop" a couple of times while there.  it is weird, but being open about it is a good idea. I stay away from seeds, popcorn, nuts - if I order a sandwich that has seeds, I order two bottom buns.  Your friends will become so accustomed that they will remind you to order this way.  chew your food well also. It is a tolerable situation.

[JackieRae]

I also had my large intestines removed about 4 years ago. Mine was from a blood clot. The first year was really bad because it seemed stomach acid would pass right throuh and I would burn and bleed. That has all but stopped now. As others have said, it is wise to know where the bathrooms are located cause sometimes there is little to know warning! When it is time to go .... ya gotta go! Even if it was just 5 minutes before! Hope all is well now for you.

[sockerguy]

I had my large intestines removed 2 years ago because I had ulcerative colitis. The surgery was done laproscopically and everything went well. I am 19 years old, and I'm currently in college. Everything in my life is pretty normal. I go to the bathroom about 6 to 8 times a day, but I am in much better control of it that I was prior to the surgery. Aside from that, everything is pretty much normal. I can eat anything, most foods don't make a difference as to how much I use the restroom. I can also drink alcohol normally (I can keep up with most of my friends) and I find that sometimes it helps me sleep through the night better. A typical night, I will wake up one or two times to use the restroom, and if I don't, I experience a little leakage from time to time. When I drink, i sleep through the night without having to use the bathroom at all. Idk if that has anything to do with anything, but just thought it'd be nice for you to know, if you were worried about drinking at all. I hope everything is going well for you.

[Tim_O]

Amanda,
  I had my large intestine removed as a child.  I don't remember life with it so it's hard to comment for what to expect.  I do use the restroom more frequent then anyone I know.  in fact, it seems once I eat a meal shortly there after I have to use the restroom.  I eat about 5 meals a day, not because I have to, but because I'm a triathlete and try to maintain a steady source of nutrients flowing through my body.  I guess the one thing I know different about it amongst other, is since your large intestine is responsible for absorbing / maintaining the fluid balance in your body, you may dehydrate a little easier & you'll find that your BM's are no longer solid.  they're very much comparable to diarrhea - but like I said, this is all I've ever known & I don't know anything different.  I'm 24 in case you're curious.

[farrukh111]

Hi Amanda,

I also had surgery as a child to get my large intestine removed and dont know a lot about life with large intestine. However, i have pretty much learnt to live with it. I cant seem to be able to eat a lot at one time, get a lots of gas easily and get dehydrated a bit easy. However, i dont have to use washroom more than twice a day. I am always low in iron though and have to take iron orally. Amount of fiber you take daily should defintely make things a bit easier for you :)

[123410]

Can anyone comment on good/bad experiences they had with the surgery part and if a bag was used temporarily and for how long.

Is there any other known techniques that can be used to help get your large intestine to start working again. My neice (15 yrs old) had a mobility test done and found no movement at all and so the doctor is recommending to remove the entire large intestine.

Also, if anyone can share a great doctor or hospital where they had the surgery done. We are also looking for a second opinion.

Thank you so much.

[Crazy4frogs]

    My name is Stephanie and I had my Large Intestine removed at age 9 (14 years ago, I am currently 23). I have had no problems, No foods hold me bad, seeds dont bother me. I ussually have a BM every time I use the bathroom. Alcohol isnt always the best thing, the next day it is usually pure water like.
    But I have a question for all of you that have already had this surgery. I havent had any extreme weight gain in the past 13 years and now my weight went from 140-188 in about 8 months. Doctors say im just at that age, and that I just need to exercise more, but I already do. I am just wondering if anyone else has had this problem or may know whats causing it.
Thanks
Stephanie

[nifer71]

I am 36 and had my large intestine removed due to colon cancer about a month ago. A week after the surgery I got an infection and they had to open my incision. I have to pack the wound with gauze twice a day, and has really slowed down my recovery, has anyone else had this problem, also I love to eat salads, will I be able to have these again?

Thanks,

Jen

[sally299]

Hi Jen,

I am 27 and had surgery to remove my large intestine due to Ulcerative Colitis about 9 months ago.  At the time I was really ill - v. underweight and on loads of steroids - so my wound got infected early on too.  I was pretty upset about the infection initially cos I know it looks yuk - but don't worry!  It takes a while to heal but because you're packing it and cleaning it it will gradually heal from the bottom of the wound up... it's a bit like watching paint dry but you get there in the end!

I was initially scared about reintroducing potentially 'problem' foods and took things slowly... they give you so many leaflets warning you about things!   I have gradually reintroduced many of these foods - including salads - over the last few months and and it all seems to be fine.  Just remember to chew!

I've got the ileostomy bag now but hoping to have the operation for an internal pouch sometime in the future... fingers crossed.

Hope that helps,

Sally.

[frenchsquad]

I am 41 and I think I had my large intestine removed when I was 2 days old. All I knew from my parents is that some of it or all of it was removed. I was clogged when I was born.  I had a colostomy until I was 6 months.  All my life was like the way you described your symptoms : loose bowel movements, ultra gas... the new pushing the old etc.  It all depends on what I eat.  I should meet a dietitian for a better diet since I am getting older and wiser.  Less of the bad and more of the good.  

[sammy48]

I am going to have my entire colon removed due to contipation/sluggish colon.  They are going to reconnect my small intestine to my rectum.  I am 37 years old.  Has anyone else had this  done for this reason.  Or just had this done.  Are you happy with your decision?  I am very nervous and don't want to make the wrong decision.  Please help!

[jae58401]

I have already had 14 inches of my lower colon out.  Now I have had a major flare up and my doctor thinks I need more taken out.  It seems to be a "yearly" thing of infections.  Does anyone think I would be better off to have all of my large intestine out, instead of just a little at a time? I have diverticulitis.  

[brettswife]

I am having my lg intestine removed in about a month and having my sm intestine attached to my rectum due to my digestive tract and the fact that I have chronic constipation....I am looking forward to this because (I just had surgery  a little over 2 months ago for my intestine in my rectum they thought that was the cause of the constipation) I am hoping that I will finally be able to "poop" without the use of a laxative  Good Luck to you!

[dangerousdunn]

I am a 51yr old woman and had my large colon taken due to constipaption, chrons, suffered for about 30 yrs.  The surgery took 7 hours...they hooked up my sigmond colon.  that was in april at first oh my god I thought I would never make it to a bathroonm and pheuuuuuuuuu the smell would kill anyone..  Today I have soft not diaheera stools..and as for eating..I try and see.  I am full time student and today is the first day I missed class due to trapped gas  (ouch) I know i will not eat marshmellows again........as for weight sure I lost some when they took the colon, but very soon I was back up to normal.
hope this helps ..Peace, susan

[ttilson3]

My husband just had his large intestines removed a little over a week ago. They weren't able to do the ileostomy so they hooked him straight up. He's having a major problem with keeping anything down. They had to put in a nasogastric tube today to keep his stomach cleared. Has anyone else had this problem and if so what did they do for it? Thanks for any help.

[Sam072565]

My sister had her large intestine removed and now has her small intestine connected to her rectum.  She is done with the stomach problems but is now having a severe burning sensation in her rectum and a build up of pain.  She decribes it like the sensation of when you feel a labor contraction building up only it is affecting her rectum area now.  Has anyone had anything similiar?  She is miserable and it makes her scared to eat.

[jeanie0908]

Had 14 inches of my large intestine removed, along with my ileum.  My diarrhea continued until the doctor finally prescribed cholestyramine (Questran) that I take twice daily.  This has stopped the diarrhea since it replaces the chemicals which had been produced by the ileum.

[syljean]

My grandson was born Aug 8 2008 with gastroschisis.  The doctors removed all but one inch of his small intestine and the same amount with his large intestine.  They said you can live and function without the large intestine but not the small intestine.  He is on a feeding tube and hope he will receive a transplant.  So, you should feel lucky.

[Hobbsy]

I had my large intestine removed 17 years ago. I am 45 yo now. My suggestion to anyone having this type of operation is to carefully choose the surgeon. I had my operation done in a large hospital and not in the country town where I live. The surgeon was leader in his field and the results speak for themselves. I can eat whatever I want, I have fantastic muscle control (can hold on for an hour or more), do not have gas problems and have not had a problem in 17 years. I had the operation when I was pregnant and have had another child since. I suggest you speak to a colorectal nurse before and ask the questions, particularly about post operative problems. Best of luck to anyone undergoing this operation. It is a big change in your life, but one you won't regret, particularly if you are very ill. Cheers

[rosey12]

I had my colon removed in July/08. This was after two prior resection surgeries of the colon and many times of the colon twisting and blocking up. I'm a 59 years old male. I did not have to have a bag. They connected the small intestine to the rectum at the same time the colon was removed. I had to get cut open because I also had some small bowel blockage at the same time. My surgery was a little tough because I developed a infection and had no food for over three weeks. I was in the hospital for 27 days and became extremely weak. They finally fed me through a tube in my neck. I lost a total of 35 lbs before finally getting better. After the surgery you can expect to have 8 -12 or more bowel movements a day. They told me it would take 6-12 months for the small intestine to start functioning like a colon. You will have to be close to a restroom for a period of time until you learn to have more control. Things get better over time and there is medication that can help slow down the number of BMs you have. Also, metamucil helps to form your bm's. I would suggest you drink a lot of liquids since you will be losing a lot during your many bm's. The doctors told me to drink gatorade or something like that to help replenish your electrolytes.

Hopes this helps and if you have any other questions please ask. I've gone through a few colon surgeries. The only issue is the more surgeries you have the more scar tissue develop. I have had a blockage where my small intestine wrapped around scar tissue. make sure you really need surgery because of the scar tissue factor.  

[heatco]

In 2005 I had 4-5 feet of large colon removed and  used a temporary Ileostomy  for 1 year
In 2006 reversal was performed and I have been learning to cope with ever since Things such as eating certain types of food seem to play a part in BM frequency and consistancy 6 small meals per day works better than 3 large, Also high protien foods as opposed to high fibre diet tend to prolong BM events, which can be usefull if you have to spend some time away from an available bathroom , sometimes I think having a hungry feeling for an extended time indicates an acid discharge is imminent,These can be unpleasant but a soothing cool or warm wipe will help reduce discomfort Also As I am male I respectfully will not try to draw a comparison to labor contractions but when deep rectum muscle cramping occurs I have found a Hot water bottle placed on my seat brings a lasting relief !!! Also I definately would say as others have that as more time passes a noticeble improvement takes place .So hang in there at the start Its 3 years since my surgery I have definatly seen my quality of life Improve consistantly month after month . I do try to research on useful diet hints like example chinese  fried rice helps to stablise an angry stomach From the ill effects of too much alcohol or sugar
etc.... BLT sandwiches rarely lead to quick voiding where you can eat go to the bathroom and 10 minutes later feel hungary again ( my weight holds around 175 lbs on a 5'11 frame, So It helps to discuss this with others as the more you realize we are all learning together ,information is key,I am 50 yrs and looking ahead to 50 more.

[ladydi81]

i'm 48 and had my large intestine removed 2006....I didn't know you really didin't need it! I had Crohns...quess i don't have it anymore...ya think.....anyway, haven't had many problems...eat anything i want, drink alcohol, smoke...i just got used to knowing what to expect when i eat different things....i know i need a bathroom near when i eat lobster and butter!....i found that taking a few lamotal pills slows things down a bit...my Biggest problem is findind a product for the burning rectum after having all the loose stools!...i've tried vaseline, prep-h wipes(they're ok), balonal....i can't find anything i can carry easily and can instantly soothe!...any suggestions????also i carry a product called Just-a-drop!..this stuff is great for those stinky poops it really works!!!!...ordered on line

[TrudieC]

I have found that really, really good wiping is required for the burning rectum.  I have to put the toilet paper right up inside to eliminate any of the remaining feces.  Without the large bowel some of the stomach acids remain in our stools and you must thoroughly clean.  This is my big fear - that if I become incontinent and reliant on others that this won't be handled appropriately and I will be in awful pain.  I also find that using baby's diaper rash ointments like zync oxide can help tremendously.

[Morecambe]

I just noticed the additional replies to this posting.  I underwent a total colectomy about five years ago for torrential diverticular bleeding and described my experiences on:-

http://www.medhelp.org/posts/show/523166

regards
Morecambe

[chyvonne]

hi i had my large intestine removed 3 weeks ago.  i have suffered with a twisted bowl since i was born and now im 23 they finally done something about it as i couldnt go to the toilet it would get stuck and id end up spewing it up which i tell you wasnt pleasent! then id pass out and wake up in hospital on a regular basis.  

i had my surgery at the southern general in glasgow by mr witherspoon! i recoment him 2 anyone he was fabulouse and im doing great.

i had key hole surgery and he took away all of my large intestine which he told me was also abnormaly long, especially since im only 4ft9.
after the operation i was really sick but after 5 days i was great up eating and walking about.  i got out on the 8th day and iv been fantastic i feel like i finally have a life, im recovering so quickly to everyones surprise.  

i hope that this helps anyone who might be goin through similar and have the operation coming up,  all i can say is dont worry and i feel so much better without it and my life is getting better without it.

[Serafina82]

Hi there.  I also am a young woman.  I had my large intestines removed when I was barely 24.  It was NOT done laproscopically.  I also have colonic inertia and have since I was a little girl.  The doctors are unsure of the cause.  I have recovered relatively well after surgery, however, now I am dealing with scar tissue causing GI obstruction and will have to have more surgery soon.  PLEASE listen to the doctors and take it very easy after surgery--this was where I went wrong.
I stick to an ostomy diet--which means not too much roughage like salad or very hard to digest foods like corn (darker greens like spinach seem a bit easier to break down as they are softer).  It is pretty simple really.  I still have to take laxatives like Miralax to make my body go normally, but I do feel much better than I did, and best of all I am alive!  If the doctors had not done this surgery with the way my large intestines had completely stopped functioning I would not be here to send you this message today.
Please know that there ARE others out there like you, going through what you are going through.  The biggest thing I can tell you is that you are not alone and that support groups like those found on Yahoo actually are a big help.  
Good luck!  My thoughts and prayers are with you.

[bellachick]

Heyyy!!!
i'm about to have a Laparoscopic total colectomy (where they are going to remove my large intestine and rehook the end of the small intestine to the rectum!
im 17 years old, so lm quiet young!
im having this operation in 2 days! lm pretty scared! :( but i was wondering has any1 had the same operation? and does anyone know how much the large intestine weighs?
if anyone could get back to me that would be great!
bella- :)

[Morecambe]

There are many replies to this previous posting but I'll repeat mine since I think it is what you want.

I recorded my experiences of a total colectomy on:-

http://www.medhelp.org/posts/show/523166

regards
Morecambe

[fullmoon24]

For those of you contemplating surgery, I can tell you from my experience that it is the ONLY way to go, if suffering from diverticulitis.  Please let me tell you my story:  I was a completely healthy active woman who is a teacher until I experienced my first diverticulitis attack 3 1/3 years ago. After experiencing three years of hell trying to figure out what to eat, what not to eat, swollen stomach, looking pregnant, many trips to hospital, bloating, constipation, pushing so hard and knowing i had not gone to the bathroom for days, practically lying flat on the toilet trying to move things along out of my intestines,  the familiar warm hot feeling in my lower left pelvis area, three separate week long hospital trips,since February of this year,  cipro/flagyl cocktails that i ate like candy, you get the drift. I finally had surgery this summer, June 8. I had over a foot of large intestine removed and cannot tell you how normal I feel as it has been 10 weeks post surgery. My doctors told me that my diet can be normal, and for the first time in years, popcorn, corn, etc. since my damaged large intestine was removed. I feel terrific. No annoying cough, no infections, just pure, wonderful life ahead of me. I opted for an open surgery as my surgeon wanted to have a good look at everything and I had complete trust and faith in this man. When he removed the colon, he found that I had scar tissue even on the outside and more damage than expected so he removed a foot. I truly feel as if my life is at a second chance. I cannot tell you enough to opt for surgery. Even though you can have it done lapro, with such a serious condition as diverticulitis, I would suggest if you have a serious case of diverticulitis, you should have the open surgery, as the surgeon really can see the damage completely and if any to organs surrounding. Because of this , he was able to see that I had scar tissue on the outside of my intestine which prompted him to remove even more of the damaged organ. Once you heal, No more sickness, no more stress wondering if one is going to burst, no more worries, and how wonderful it is to feel normal again. This past week I had popcorn, and last week corn on the cob.  I eat well balanced meals now with a little of everything.  no guessing.  I still do take colace twice a day, and one senna pill in the evening.  I have now a regular BM every morning like clockwork.  My doctor said once a day is perfect for me.  I may go in the evening also once in a while.   I am back teaching full time with tons of energy and at 50 years old, I have my life back.  Back to my membership at the fitness center.  Life could not be better.

[denpablo]

I had my large intestine removed two years ago when i was 28, this was due to ulceritive colitis, I had to wear a bag for nearly two years which took me a long time to accept. I have now had my small intestine reconnected just over 4 weeks ago, was only in Hospital for 4 days and im recovering well, so far im still leaning what to eat and when to eat but I have not had any bad experiances yet, I do wake 2 - 3 times a night but this could be because I eat late.
I am living the life I used to before all the operations apart from going to the toilet a couple more times a day.
For anyone with a bag I would recommend the surgery as I am so much happier now its gone and there was very little pain involved.

[nmax429]

I am having a total colectomy and an ileo anal amnistosis on december first. I was just wondering if anyone can give me any information about what it is like after the surgery. Thanks :)

[nmax429]

i forgot to tell you...the large intestine weighs around 4 lbs and can be between 5 and 6 feet long

[terri49]

Wow what can I say, I had my large bowel removed 3 years ago and my health has gotten so bad. My doctor only told me that I would only be using the bathroom alot sure!!! what a joke. I now have celiacs, lactose,weightgain,fibromyalgia,osteoarthritis and so many other food allergies and when I say food allergies I mean foods that I've eaten all my life that I dare not try to eat now and then it's weeks I don't want to eat. I really wish all doctors would be straight and tell you everything on the pros and cons. If there is a doctor out there please tell me what to do and help your patients before surgery to get a full understanding.

[barnaby100]

I had my large intestine/bowel removed 23 years ago when I was 18. I had very sudden ulcerative collitis caused they think by cholera. It was all removed and reconnected in 1 op- small bowl to rectum. At first I had sudden need to go to the loo- lots of accidents- went about 20 times a day for first year. Then it gradually got less and less- I still had some ulcers left. I had 2 children and pregnancy helped ulcers. Now I no longer have any ulcers- I go to the loo 3-4 times a day- for about 15 years I had to get up in the night- but not now. At best its like toothpaste- mostly much looser but very much under control. I can eat anything but dont digest some things (peas, mushrooms, nuts etc, some fruits but thats ok and they dont cause any problems). I put on weight and now sadly have a BMI of 25 which isnt great but given that I weighed 6 stone at 5 foot 7 at my lowest point its ok. Only downside is that I tend to get hemorrhoids about once a year and I have a rumbly tummy at times!. It hasnt stopped me doing anything- not had a day off work with it in 20 years- climbed mountains- trekked around asia etc etc
If I hadnt had the op I would have died but I can honestly say it has not hampered my life in anyway. Many of my newer friends dont even know. Please dont be put off my the negative comments in some postings- everyone is different but I have a wonderful quality of life and 2 great children - all after this op.

[kjsa71]

I had my large intestines removed a year ago for severe colonic inertia.  My life has been a living hell since.  I have to go back next week for my 3rd upper and lower endoscopy b/c I'm really anemic for the 3rd time this year.  I keep getting bleeding ulcers along the digestive track and now they are saying I have Crohn's.  I was used to a very healthy diet before the surgery and now I can only eat items like bread and cheese or it will send me running to the bathroom.  The gas is ridiculous.  I take beano, simethocone and anti-diarrheal medicine which helps a little.  I only go out for a few hours at a time.  I'm a personal trainer who can't eat healthy and who can't exercise b/c my iron is so low.  I take vitamin and iron supplements and keep coming up deficient.  My skin is dry and my hair breaks off all the time.  I find more of my hair everywhere than the dog.  Being severely constipated all the time seems like a luxury life now.  At least I wasn't afraid that if I pass gas I won't **** on myself or take down the building with the smell.  

[irene1980]

I am now 29 years old and for the past 7 years I have had problems with my bowels.  I simply cant go.  I have done it all.  Every remedy from every grandma, from every country, every herb, every drink, diet, etc, etc, etc.  Because my thyroid was so out of wack, I was tested for Celiac and came back positive.  That was just this past april.  We thought that a gluten free, lactose free diet would be the ticket to get my digestive system back in order, as well as correct my thyroid levels ( i am hypothyroid now for 9 years).  Well, thyroid is perfect now, but my bowel problems have only worsended.  Doctor says I may have developed Hirschsprung's Disease, which have caused my severe inertia.  Nothing moves past small intestine.  He has recommended that I see a specialist, specialist ( my doctor is a gastro guy, just wants me to see someone who is an expert in constipation) and has recommended surgery.  Says I have caused so much damage with all the laxatives, and prescriptions, and diets and whatnots, that unless, the specialist, specialist has a miracle cure, I will never be able to overcome this issue.
I things have gone so bad, that I have been instructed to either go on a all full liquid diet or do colon preps once a week.  I have opted for the liquid diet because I have become so physically and emotionally tired of this ordeal that I am afraid of eating.  Period.  I have read the preivous post and I have to say that anything is better that having to deal with this problem.
If there is anyone close to my age who has had this procedure done recently or will have it done, any advise, suggestions?  My family has been very supportive, but it is hard to discuss a disease with someone when you look perfectly healthy.  

[CalGal]

Irene, post a message to Morecambe on the board, or go to the members site and talk to Morecambe about his. I don't believe he's in your age range, and didn't end up with surgery due to what you've gone through, but he has had the surgery and it was very helpful. I believe he can tell you the in's and out's of what goes on and what to expect.

[KMerritt]

I had diverticulitus and a perferated bowel and ended up with a temporary colostomy, After 4 months I had it reversed and they took out all but about 18 inches of my large intestines. I have had a couple of infections from the surgery which was difficult. It has been about 8 weeks of recovery. After I started eating I had to go about 20 times a day and during the night some. I gradually slowed down. I still have loose stools but, only a couple of times  a day. Gas is smelly when I have that. God has blessed me because I feel better having a couple of bm's a day than constipation. One problem I have from the  surgeries is that some smells and foods bother me, I have changed what I like to eat. I am thankful to God that I am as well off as I am. I will go back to work soon.

[mattyc370]

I had mine removed at 29yrs. Now I am 33. You'll notice that when you eat spicy foods your butt burns when it comes out so be careful. 6 months after my surgery I ran a marathon in under 4 hours. I was celebrating an occasion the night before the race and ate a huge pork chop with tons of mashed potatos. I felt great during the race and I didn't have to stop once to go to the bathroom. Aside from that I don't know how much a large intestine weighs

[crallen]

About 4 years ago I had a complete colectomy and my small intestines was hooked up to my rectum.  I know there is so many things in life that can be worse but this surgery has ruined my life.  My weight fluxuates 10 lbs on a monthly basis so I have two closests with different size cloths.  I can handle this.  What I can't handle is that I have at least 15 bms a day and can go up to 35 per day.  This has ottally ruined my social life my world (and anyone who is with me's world) revolves around the bathroom.  I may sleep two hours at a time.  This has to be the most frustrating for me because sleep deprevation is torture and I have had it for 4 years.  My sex life with my husband is horrible because there is nothing is spontaneous.  I have to even time that around the bathroom or else I will use the restroom on myself.  My doctor told me to give my body a year to adjust and get back on track but I have never gotten there and here I am 4 years later.  I avoid sweets, soda, nuts (they hurt me so bad I can't walk), fruit (except bananas), most vegetables and fat.  I have anemia, very dry skin and I stay dehydrated no matter what.  I drink lots of water and pedialyte all the time.  I am so depressed because I don't know how to live life like this.  Before my surgery I  mostly ate lots of fruit and veggies and I exercised three or more times a week becuase I liked it.  Now I have no energy and have pain at least two days a week from eating.  I go to my doctor tomorrow and I am going to ask him about Questral.  I have heard many good things about this medicine.  It was designed for cholesterol problems but it helps reduce the number of bms per day.  I will try this and see where this leaves me.  I know there are others who have worse things than this but this is the first time I have spoke so openly about the way I feel and I wanted to talk to someone who knows what I am going through.  

[beant]

I am a very concerned friend!
My best friend had her large intestines removed yesterday. To my understanding, it was suppose to be a 5 -5 1/2 hr. surgery, however, she went in at 10 am where she was prepped then headed up to surgery at 12p, she didn't come down from recovery until aprox. 11:30p, was this normal? upon her awakening from the anesthesia she could vaguely hear the nurses talking amongst themselves in which they were questioning the actions of the Dr. who performed the surgery what she heard was " How could he puncture her like that, causing this excessive amount of bleeding"? Should we be worried and if so what should we do? should this proceedure have taken so long?

[beant]

I am a very concerned friend!
My best friend had her large intestines removed yesterday. To my understanding, it was suppose to be a 5 -5 1/2 hr. surgery, however, she went in at 10 am where she was prepped then headed up to surgery at 12p, she didn't come down from recovery until aprox. 11:30p, was this normal? upon her awakening from the anesthesia she could vaguely hear the nurses talking amongst themselves in which they were questioning the actions of the Dr. who performed the surgery what she heard was " How could he puncture her like that, causing this excessive amount of bleeding"? Should we be worried and if so what should we do? should this proceedure have taken so long?

[sparkles2010]

Hi, im waiting to have my large intestine removed due to constipation.( they have said the muscle in large intestine has stopped working!) I haven't opened my bowels on my own since sept 2008. I now use an irrigation kit daily! I suffer with terrible pain, sickness, blackouts and mouth ulcers! Has anyone else suffered the same problem? If so did the op work? Im nervous, only being 19 and aiming to have a dance career, will this effect this? At the moment my life is on hold due to my problem and I cant wait to lead a normal life style.
How long does it take to get back into normal activities after the op?  
Thanks

[AEdson]

I am a 64 year-old male.  I asked for information several months ago.  Since then, I have had my Large Intestine removed, and my rectum attached to my Small Intestine.  This was due to large and numerous tumors in my large intestine (benign as it turned out).  The surgery was done on Jan 11, 2010.  I was sent home after 3 days.  Developed a blockage which required further hospitalization for about another week.  (It did not bother me nearly as much as it seemed to my family and friends who visited and said I looked like death warmed over.)  

Be that as it may, since I have come home, I have found that my bowels move much more often, and without a lot of consistency (firm, loose, in-between).  It has settled down to 2 or 3 times per day and once or twice during the night.  I have had no bad results from anything I have eaten, and I have tried everything that I used to eat, including meats, vegetables (both cooked well and steamed slightly), fruits, dairy products, alcoholic beverages.

It seems that I am a very fortunate individual, as this (contrary to my expectations going in) was a very easy procedure, well healed, without any major disruptions to my normal life-style (not that I was every a very active, athletic-type, physical-labor intensive person).  I returned to my office job within 3 weeks from the hospitalization, and have been working full-time since.

I only decided to post something here, because many of the posts I have read have had less-than-desirable results, and I wanted to be sure that people knew that it wasn't always so bad.  I'm sure general health going in, and attitude have a lot to do with it, as does a skill surgical and hospital team.

DO NOT BE AFRAID.  It doesn't have to be a terrible experience, nor does the rest of your life have to be negatively affected.

[Kate4him]

I can relate to everything you are going through...I had a colectomy in 05,and my life has changed so much...I've gained 40 pounds ,as soon as I eat,I have to find a bathroom with 15 minutes...I've been to wound centers,many doctors,and no one seems to know how to stop the rectal bleeding,pain..I take lopermide during the day,to slow down my bm's through the day and night...I use many creams for a little relief..Sitz baths are no longer helping.....
The only thing a doctor mentioned is having a colostomy...
Who thought constipation would lead to living like this....
God Bless You..I pray you get the help you need.....

[Lunaczech12]

I'm 31yrs old lost my colon last march to ulcerative colitis. the surgery saved my life my colon was about to rupture. waking up with a bag was not cool.giving up fresh and healthy foods for a year not cool. but this april2nd I awoke without my bag due to a j-pouch.I feel alive and the bm's are not too plenty. they range from 4-8 a day.my appetite is suffering but that isnt a bad thing for me after spending years on steroids! The worst so far is the itching and burning after bm's nothing from before seems to work. but all in all the outcome seems to usually turn out soooo much better than living with a sick colon, being afraid to leave the house,memorizing what stores have bathrooms and where....I went to the Christ Hospital in cincinnati ohio, I live in Buffalo but my doctors were letting me die on oxycontin/oxycodone and steroids.So question docs cinci and cleveland are known for colon surgery.good luck to all and congrats to all who like me have gotten through this mess!

[lolly1979]

I had 3 lots of surgery to have my large intestine removed and then attached up to my rectum. My condition was diagnosed as ulcerative colitus and the surgery was supposed cure me of the disease. I've had continual problems with frequent bowel movements since.  I go at least 5 times a day and twice at night (sometimes more).  I've now been diagnosed with Chrones and have problems with Fissures and Fistulas.  I've had 4 small drains (seatons) inserted in the fitulas which has been extremely painfull for me.  I recently had them removed and hope that the fistula will heal.  I think each experience is different and I don't think you can compare your experiences with anyone else.  

For me, avoiding tomotos and acidic food is a must. Anything rich or spicy is also a no no. Not worth the pain.  No salad apart from iceburg lettuce. Most veges are ok if they are well cooked. Stir fry veges are another story - I can't touch these. Alchohol is terrible and I suffer for at least a week if I have more than a couple of glasses of any alcholic drink. I take immodium at night but still have at least two bm's a night.

My situation is an exception according to statistics.  I've got a very supporting partner which has helped.  

I hope that anyone who has the surgery recovers well and I wish you the very best.

[crazy4tinypawz]

Wow!!!
I've had a blast reading all these posts.  I had the illeorectal pull through (don't know if they're still calling it that these days), 25 yrs ago (one week after graduating from high school), when it was brand new.  I was the 84th person to have the surgery, & only the 4 person to have it for my condition (heirditary colon cancer:  multiple familial palaposis, don't remember the exact spelling-I'm a terrible speller).  In all these years I never once thought to check the internet for support groups like this.  At the time I had it done, the surgery was only being performed at a couple of hospitals in the United States (I had mind done at UCLA by Dr. Founkalsrud-- one of the key doctors to develop this procedure).  It's been soo fun, reading everyone's experiences, I keep seeing myself in them, like always knowing where the bathrooms are at places you go to.  And the going 6-8 times a day.  I over the years, to help people understand my inability to "hold it", I've decribed it to them like this:  what your like when you have diarrea (diarrhea) is what I'm like on a normal day, so you can imagine how miserable I am when I have diarrea (diarrhea).  It's been such a heartwarming, and humorious experience reading all these posts, b/c there wasn't one that I couldn't identify with.  Annywayyys, I don't know if anyone is still reading these posts, as the topic was started quite some time ago, but I had to take a moment & briefly share my background & tell everyone how much I've enjoyed their honest responses.  I've know for 25 yrs now that I'm not alone in coping w/o a large intestine, but to actually read other people experiences/stories makes me feel a little less odd & alone in my often strange and abnormal behavior like eating the wrong food, (can't do spice-- ohhh the bum burn I get, ouch), & having to run back and forth from the bathroom 5-6 times over the course of an hour.  On average I go through a row of toliet paper a day-- around our house we buy toliet paper from Costco (and there's only 2 of us).  My toliet paper use has become a long standing joke w/ close family and friends over the years.  I could ramble on and on and on, finally finding a place where people are like me & understand, but I won't as I"d just be repeating what so many people have already shared.  There is life w/o a large intestine, it's not perfect, but w/ a few monifications & lots of patience anything is possible-- I went to Cody Wy, on a cattle drive-- no bathroom during the day, except the great outdoors and whatever local bushes you could find, and only outhouses at night.  
  

[hector3016]

Hi my name is Hector im 39 yrs old and I have been living with ulcertive colitis about 3 yrs, even though i think ive had it for longer than that.  Ive always had some abdominal pain all my life but ive always dismissed it as an urinary track infection and drank some cranberry juice until the pain went away.  About 3 yrs ago i really started to get strong symptons of U.C (diarhea (diarrhea), frequent trips to the bathroom,bloody stool, lots of pain after eating a meal) thats when i got diagnosed with ulceritive colitis. For me nothing worked i went thruo alot of different oral medications Asocol,6 mercaptorpurine (aka 6-mp) and a few more. My condition never really got better with oral medications exept when they put on steroids but you cant stay on those because of the extreme side.  Now im on Remicade which i get through an IV infusion every 6 weeks  it takes about 3 to 4 hrs but it seems to be working but im also worried about the side effects of it.  It seems that everything good comes with some kind of risk.  Righ now im frustrated, im tired of the symptons of i get when the medicine is fading and its almost time for another infuision. So ive been thinking of having the surgery myself to get rid of it once and for all (the pain,bloating, blood,gas,). I allready use the bathroom quite often so i figure at least ill get rid of most of my symptons if i get the surgery.  I also would like to ask everyone with U.C  or if on Remicade if they have developed sensitivity to heat or the sun.  During the summer month my feet swell, (mostly below my knees)  red circular dots pop out with joint swelling and of course lots of pain Ive  been to lots of doctors nobody could tell me what it is Im curious if this could also be a side effect of U.C or Remicade i hate this because i LOVE the summer i love fishing camping bbq anything that has to do with summer so this is my biggest reason for for having the surgery. Ive spend most of my summer days now lying in bed with my feet raised with the AC on trying to get the swelling down so i could maybee spend some time outside before my feet swell up again.  Sorry for typing so much but this is really the first time i really talk about it well type to anyone. Well let me stop here, thanks for everybodys time hope to here from u guys soon..

Hector from New York 6-5-2010

[rosie27_2]

Hi all

I had my Large intestine taken out in march 2010 as i suffer from Familial Adenomatous Polyposis (FAP), is a faulty gene,  which causes cancer in the bowel before im forty so the operation for me is a life safer as im only 27. I Had my large bowel taken out and  a J pouch formed out of some of my lower small bowel and my operation took 7 hours which is the time limit for a reversal and a pouch to be made, with out the bag,  this would only have taken 5 1/2 hours or less if i did not respond well to the anethetic, i would have been given a stoma ( bag). I did recover very well from the surgery, i did have a fizzy drink diluted with water but i got colic then i had to have an NG tube over night and that took the gassand that away i did have a norrmal bowel movement it was watery at the time. since then  i have had 3 little hick ups on the way,.. one day after my surgery as i was sensitive to the morphone and i had sever septicimia a month later and a small infection but these infections were to do with a stitch my body refused to allow to disolve.. im lucky as i have a nurse as my boyfriend. i did feel a bit down when i got the infections but i was given antibiotics and was told its only a small step backwards..  But regarding food my surgeon ( im very proud of him and his work ) warned me against fizzy drinks, nuts.. i can eat almost anything,,.. longer its in small quantities,  to not over do my bowel.. i can eat spicey foods too and drink normally.. i have drank a little fizzy drinks but not alot as im not very fond of them anymore., Regarding BM's.. now i have regualr bms, but they dont ruin my life.. i have about 3 to 4 ofthem a day.. or a little more... atthe beginning i would wake up at night but now i wake up about 6am in the morning.. i do take meds.. i take Loperamide Hydrochloride ( which helps to harden and take the moisture out) and i also take Buscopan ( which helps with the spassums) i take paracetomal for pain relife.. I am desting to go back to work in september or there

[Rserp1962]

My son was born with Hirchsprung's and they removed his whole large intestine. He has had nothing but problems.
If he catches a cold he ends up in the ICU with Organs shutting down.
This happens at least once a year.
He is not growing also. He wears what a two year old would wear in clothes and he is approaching 6 years old now.
He had a pull down surgery that failed the first time and had to do it all over again at a later date.
He gets bactira in his small intestine and makes him very sick and lands in the hospital.
I am just wondering what tomorrow will bring??
I tried to get him on SSI and he was refused because they say he is not marked or have sever limitations.
Has anyone else had trouble with getting SSI for their child because of this? And what did you do?
This poor kid has it rough and he can't even get the help that I believe he should get.
Crazy.

[ashng14]

Hi I am a 21 year old woman I had a total colectomy in March of 2009 due to uncontrollable Ulcerative colitis. In 2006 I got pregnant with my second child and began having a lot of problems. Going to the bathroom sometimes 20 times a day, lots of blood passing. My OB/GYN kept pushing it off as a viral infection and treating me with anti-biotics. Finally in 2007 My family doctor agreed to send me to Gastro specialist. I remember waking up in the middle of the colonoscopy and hearing a nurse say "Oh my god she's only 18!" before I passed back out. I was diagnosed with Ulcerative Colitis and tired all possible treatments that my insurance covered. I was on a very high does of Prednisone for 8 months, gained 70 pounds, got the "moon face", it was miserable. I even had Remicade treatments at the highest does every six weeks to no avail. I was taking 40 pills a day to try to treat the disease, some of the pills were to counteract side affects from the other pills or from the Remicade. So so frustrating. Nothing changed I was puking and pooping at the same time.Finally I demanded to see a surgeon and discuss the surgery. He decided that this was what was best for me. I have two small children and I wasn't capable of taking care of them, because I was soooo sick. I had the surgery March 9th, 2009. I had my whole large intestine removed and the Dr couldn't believe how terrible of shape it had become.Everything went perfectly, I was released after a week in the hospital only to end up back in the ER the next day with a severe bowl obstruction, I was hospitalized for another 7 days. I had the ileostomy for 7 months and had the reconnection surgery in August of 2009. Since then, I believe my living has improved. At first I lost a lot of weight, but now remain (and can't budge) from 150lbs on my 5'4" frame. I still use the bathroom about 7 times a day and at least once or twice a night. As soon as I eat, I go befoe surgery I couldn't even make it through a meal without living once or twice.  I do have better control now, I had a lot of accidents before the surgery. I have only had a few since then. Certain foods do set me off- racing to the closest bathroom. I have found that fruits and veggies pass whole, they just don't seem to break down and can be painful. I feel like the surgery was a success, my family feels diffrently, they just see me still going frequently and don't truly understand how difficult life was before. I look forward to getting back to "normal". I have a scope coming up in December to see if the colitis has returned in the small part of the rectum that the Dr left behind. I'm hoping everything goes well. Good luck to everyone facing this surgery!

[equivalent]

Hey all,

Here is what I have learned about food minus my large intestine:

helps-
psyllium (1 T twice a day added to a smoothie. Doesn't taste great, but the soluble fiber helps my bowel movements be more formed)
roasted veggies: carrots, squash, pumpkin, sweet potatoes
green smoothies using a Vitamix and quickly cooked dark greens and fruits
chicken and fish seem to be a better protein source than beans

hurts-
tomatoes (especially tomato paste)
alcohol
coffee
nuts
raw onions
peanuts
too much insoluble fiber
dairy
sugary foods
chocolate (this breaks my heart)

I would love to hear what other people have learned over the years. I have considered trying the Specific Carb Diet, but have not. I am 30 and had my entire large intestine removed in 1996-7 (3 surgeries) as a result of ulcerative colitis (since 1990).

In response to older posts, I lost a lot of weight right after the surgeries, and once I healed my weight shot up. I went through many years of not being able to lose weight. My turning point was doing the Clean Program. Please note that the program used to include psyllium for fiber, but now it uses insoluble fiber that does not help me. I make my own shakes using 1 scoop Metagenics brand UltraInflamx (basically a rice protein plus vitamins, ginger, and tirmeric), 1 T psyllium, cinnamon, dry ginger, and coconut water. Hope this helps.

[rahul1000]

i am 47... i have intestinal tuberculosis in large intestine.. shou;d i get half of the intestine removed ? what are the consequences after i get it removed ?

[CalGal]

Rahul, you may want to start your own post. That way everyone will see it. You may want to take a look at posts by Morecambe who has had the whole of his large intestine removed. There are lots of good information in his posts on the subject.

[crazy4cats]

Help!!!  I was released from the hospital today.  I have severe diverticulosis with recurring diverticulitis.  I was told by all my doctors that if I did not have my entire large colon removed, I would continue to have painful flare ups and most probally eventually rupture or perforate and could easily die if this occured.  I am scared to death to have this surgery.  It is after midnight and I have read the posts from everyone.  I don't know if I should continue to suffer from flare ups and take the chance of perforation or have my colon removed.  I do not want to have frequent stools, burning, etc that come from this surgery.  How did ya'll make the decision to have your colon removed and was it the right one?  I don't want to trade the devil for the witch as the old saying goes.  I would appreciate any help in making this life changing decision. Oh, should I use a general surgeon or a colo-rectal doc?   Thanks in advanced for your time.

[simonetan]

Hi guys
I'm 22 now and living a normal life without my large intestine for about 3 years

The doctors say i have to do a trial and error, which i did... the only thing i cannot eat is chilli :( and im asian and love it..

Ive trained myself to not to got o the toilet as much now.. and my friends understand why i need the bed closest to the toilet when we stay in the hotels or cabins or why i go to the bathroom every 30 mins after food. plus letting off gas which is the worst

sleeping patterns are great i only wake up once or twice during the night and depends on if my family go out or not I wont go to be till abut 1 and wake up at 7am without a problem..

after the op i remember i should just sleep and i ripped out IV for the morphine.. and when i sleep i will not move.. slowly i gradually sleep on my side using a pillow on my stomach...
sneezing would cain... i would not leave the mouse without a cushion or a pillow

and wouldn't leave the house for weeks on end..

my operation went for 32 hrs from what my mum said to me..

sometimes i i look are my scar and think I want my life back...

but this is my life now..

if my friends weren't there fro me i wouldn't know how i would survive. they were so protective of me and wouldnt let me go to the praise pit ( mosh pit) in churxh...

you gotta take risk and trial ad error to see what your body can take

hope this helps you guys :)

[jaszzie]

I have ulcertive colitis, too, and I worry that the condition may get worse. My biggest fear is result in having a bag. You said you had a bag for two years and recently got the surgery. Why did you decide to have the bag? Is the bag completely removed now? How r u doing?

[cherrelle]

I am 19 years and i was diagnosed with Ulcerative Colitis about 4 years ago, i have been seriously thinking about having the surgery to remove my intestine, i dont want to have a bag, but i know i will have to, i cant put up with my standard of life anymore, i have to go to the toilet alot, and my stool is always loose, i cant live my life the way i want to, for example im scared of long car journeys because if i cant get to a toilet quick enough, i will mess in my underpants because i physically cant hold it. So Im scared to go out with friends. Once i went to the cinema and i got the terrible pain and let off gas, which stunck so bad so i went to the toilet and i couldnt make it from my seat to the restrooms, so as u can see i dont have much quality of life, but after reading some of these comments, it seem life after the surgery is not much better, you have all said that you still have to go to the toilet about 6-8 times a day and wake up in the night, it seems like even the surgery is no cure.

[Kathy020552]

At the age of 53 I had my large bowel removed and they connected my small bowel all in the same op so i did not need a bag.  It was rough for the next 8 weeks but as time went by I was leading a normal life up to a year ago then all the old symptoms came back feeling sick bloated stomach and feeling  rather ill. I went to a bowel consultant and she told me it was to do with my diet and put me on a low residue one.  It worked wonders.  See I always eat healthy plenty of veg and fruit and fibre that is fine for people who have not had the op but for us who have it is totally wrong it makes the small bowel work too hard and in the end she told me my small bowel would have packed up as well. It makes sense really when you think about it.  I miss my fruit and veg but just eat very small portions of this. Also eat every couple of hours i.e. breakfast then mid morning snack lunch then snack tea then snack. This way you never feel hungry but only do small meals you also wont suffer from wind.

[tyme4fun1]

I did more then 2nd opinions actually did about 5 or 6 since I was trying to save as much of my colon as I could. Even after going threw a couple colon exams and researching on line felt it best to have the sub total colostomy, which after talking to many sugeons it was my only option. As I have about 20 polyps in my large intestine threw out. Which they will attach the small intestine to my rectum without a stoma, saving the rectum, which I was also concerned about.  I even investigated cyberknife and laparoscopic surgery's.  The polyps were in various places and was hoping to save some of my decending colon as most was in the ascending and transverse, which were benigin, yet since I began to find out more on polyps since I first knew a year and half ago began doing my research. Until now one had surface cancer, not spreading so I need to do something now. Polups I had were from small up to 4.5 cm and of course the bigger they are the chances are better to have cancer. I never thought of checking for polyps untill I met some classic car guys talking about it and found that one should be checked at 50 and here the first time I was checked was 59.  Thanks to all that entered a comment to this site.  Life is what it is, so do your homework and research for you best results. As I research more since I have to have surgery it may be open or Laparoscopic which there is new technology called (HALS)

[patient915]

You have responded to an old, outdated thread from 2007.  The people who originally posted these comments may very well have moved on.  Rather than reply to an old thread, we recommend that people start a new topic to discuss the subject anew.  To do that, please click on the green "Post a Question" button at the top of the page.  This will get your post the attention it deserves.  Thank you.

[geor11]

hi my mom had her large intestine removed 3 years ago, and she has diarrea (diarrhea) all the time. Can you inform if there is a medicina or anything to reduce this episodes? please let me know the name of the medicine.
thanks a lot!

[di_morton]

Hi,
I suffered with bowel bleeding for a year, without telling anyone about my problems, and ended up very ill in hospital very thin, fraile and losing alot of blood due to ulcertive colitis. After a blood transfusion and 12 steriods a day i was allowed home. 6 months later i relapsed and was told on my 16 birthday i would have to have my large intenstine removed and given an ileostomy bag for a year. I was devastated, how could this happen to me, iam too youn, how would people look at me, id never live a normal life again! Surgery was day after my 16 birthday and i was in hospital for 4 3 months (think this may have been due to may age and not wanting to deal with this thing).
Anyway after alot of councelling i went home and got quite "attached" to freddie the stoma. As soon as i was out i thought bugger it and started going out with my skirts on and if anyone asked what was under my skirt i would tell them it was my money bag :) I wont lie and say it was easy, it was anything but as i ended up being allergic to most of the bags so it was always leaking so ended up just lying in my bed with the bag off watching the myself poo (strange but what could i do) and i must say it did have a mind of its own. I also had a blockage and had to have another operation to rectify it.
The day came when i had to go and see my surgen to see if i could still control my bowel muscles and i passed :) Off i went into to get my bag reversed and have my pouch inside made. After the op i recovered quickly but did miss having "freddie" with me and actually took me about 4 months to stop holding the area where the bags was placed. Anyway i do suffer from a few areas of bad trapped wind but nothing some andrew salts doesnt fix. I eat most things and also drink "a little too much wine" which really doesnt affect me much apart from turning my loose BM a funny colour. I am at the toilet quite a bit (even missed my flight once cos of it) but all my friends know me know (am 31 now) and i just make a joke of it.
To all going through or have been through stick in there, i think its made me the person i am today! Am more aware of illness and how others feel and i always think there is always someone out there worse than me.
I would also love to thank my Surgen from Stirling Mr Hendry and my stoma care nurse Sister Booth couldnt have done it without you xx

[jaan2183]

Hi There,
I am advised  that I need to have my large intestine removed because of chronic constipation  and am worried about this. Will I loose a lot of weight as I have aleady lost about 12lbs in the last 6 months.  What type of diet will I have to go on. The surgeon said that I may have a bowel movement after every meal is this correct. How long is the recovery time after the surgery. Are you satisfied with your decision and did this change your life for better or worse.Will your life get back to normal afterthe surgery.

[mmjain]

My brother-in-law is suffering from multiple polyps in large Intestine. he went through with a severe surgery a year ago, n now he again suffered with multiple polyps in his Intestine, that cannot b removed from colonoscopy.now, doctors are suggesting to operate n remove the whole intestine. we do not know if his problem is hereditary or not. what may be the risk behind? will he able to live his life normally? as he is just 31 years old now, what may be the risk if he want his wife to get pregnant? what about his life expectancy?

urgent help.....

[The1andOnlyMe]

Thank you for posting this response even though it was over a year ago.  My doctor thinks that I may have MYH which is another hereditary disease like FAP just not as many polyps form.  I have my 2nd colonoscopy in 6 years (yes I was supposed to get one every year and didnt) and I have been so afraid they are going to want to take my intestines.  Reading your post and all the others, I'm not really afraid any more, so thank you, I will deal with whatever I am handed.  Thank you!

[spudly493]

hi i have has problems with a lazy bowel for ever i have been in hospital so meny times this last 2 years ive had all test dune and i have a slow trancit in my large bowl bin hospital today xray shows iam inpacted and ive got the worse pain in my right ribcadge ive been on fleet enimars movical and dont ceam to be going they have told me to have 8 movical a day for next three days i just cant carry on like this my belly gets so big even the drs think iam pregnant wht can i do x

[to be happy again]

Your brother in law should get genetic counseling as it is very important for him and his children.  I too will be needing to have the same surgery and I was informed by my surgeon that as long as the rectum is intact and with proper medication, there shouldn't be too much change in your bowel habits.  The genetic counseling takes about 2 months to perform.  First appt is for family and personal history.  The group then evaluates all the material given and decides what blood tests to perform.  That usually takes 2 weeks. You then go back for the blood tests and then about 2 weeks later you go back for the results.  The people there along with your surgeon than decide what type of surgery is necessary.  At least that is what I was lead to believe.  I will go in August to start mine.  If it saves my life and those of my children, this is well worth it.  

Best of luck to your family.

[wendykenn]

I understand what you say about the suffering with the constupation, for I to suffer horrible with it.  At the current moment I am taking the  marker test to find out just where the large intestine is lazy, for insurance prupuses. The test last for eleven days and for all of that I know my bowels will not move on there own.  There for It's a very hard test to take, leaving me very unconfortable !!!!!!!   Three years ago I was near death due to so many health problrms, all stemming from the lazy colon.  I reasearched and reasearched, and found a amazing wonderful lifestyle and nutrion products and have healed myself in so many ways....... ALL BUT GETTING THR LARGE INTESTINE TO CONTRACT FOOD THREW ITSELF.   So Im looking at having it removed.  I am in the Rochester N.Y area and have Dr Rauh as a leading Dr. I'm wonderinf if any one else who has recently had there large colon removed can give me any insite to this procedure, since my consultation is'nt for a 4 weeks yet.

[finallycomfortable]

have you had your surgery yet? i see you posted months ago. i had my entire colon removed almost 2 years ago for chronic constipation. i only had a bowel movement about once ;every 6 weeks. i have absolutely no side effects from the surgery and can eat whatever i want. no diarrhea and no more gas tummy aches! best thing i've ever done in my life!!!

[finallycomfortable]

email me if you want to 'chat"...i had a colectomy done in 2009 and best thing i have ever done in my life!!! i would highly recommed it! the recovery is hell but only a couple months! good luck to you

[handy101]

Has anyone had any children before or after there surgical precidure? If so was it normal?

[TerriD123]

Can anyone tell me the name of this surgery?  My mother had it done in 2003 and now suddenly every time she bends over she has the sweats, starts vomiting and in terrible pain.  We do not remember what the name of the surgery is where they connect the small intestine to the rectum and take everything else out.  If anyone can help me with this, I would appreciate it.  Please email me.

Thank you

[CAB57]

I had colon resection 4 1/2 months ago. This was a very frightening recovery period. I did go back to work 2 months after surgery; however, I still get very tired, constipated, and have gained weight. The most difficult part of all of this is the weight gain.  Does this ever go away? Someone told me that it takes a full year to get back to normal. Has anyone experienced this?

[TerriD123]

My mother's biggest problem has been weight gain since 2003.  She gained an average of 10 pounds a month for the first 8 months and she is terribly miserable  Now I am trying to find out if the other symptoms she is having could be related after 8 years.  

[InsightfulEyes]

me too!! I'm scared, but I'm hoping I won't be bloated and in pain as much! Let me know how you are doing.

[JoannaW]

thanks Tim my grandson who now three years old often times does not want to eat did u go thru that as a child we had this happen to us several times I am trying to understand where he is coming from he told me he can not feel when he has to go poop.I am worried about his self esteem when he seeing all the three year olds potty train but him. did you go to a normal school if so how did u cope? or were u home taught? looking forward to hearing your reply. JoannaW

[Skay61]

Hi, After reading some of the comments on here I felt the need to post my experience. The first thing I can't stress enough is make sure your doctor is the best available and get a 2nd and 3rd opinion Before any surgery. My nightmare began after I had a procedure called a Laparoscopic Nissen Fundoplication for Gurd (gerd). aka "acid reflux" basically the surgeon wrapped my stomach around my esophagus to prevent my stomach acid from going up into my throat. Simple procedure I was up and about that evening and left the hospital the next day but I soon started blowing up because I could no longer belch and throw up (a side effect he forgot to mention). I also had untreated (unknown at the time) colon issues well anyway I ended up in emergency surgery (different doctor, and hospital) 4 months later because my colon twisted off and had turned gangrenous so I ended up losing all but the rectum and part of my small intestines, I spent 1 month in ICU, 1 week in a coma and woke up with an ileostomy bag on my right side. I had a total of 5 major abdominal surgeries and a 5 month stay in the hospital then sent home basically bed ridden with home nursing and living on TPN (IV nutrition). This was in 2007 when I was 45 years old. It was a very slow, painful, and difficult recovery. I am now on total 100% disability. It's been 4 years since my illness, I no longer have the "bag", and I can eat somewhat a regular diet but I still have problems digesting food. I can't go out to eat anymore because as soon as food hits my stomach I cramp and bloat and spend hours in the bathroom. The first doctor who did the simple procedure to help with my acid reflux no longer is in practice. He was highly recommended by my new family practice doctor in the new town I had just moved to. I got very lucky with the emergency surgeon, he saved my life(barely).  This all could of been avoided if I did a bit more research on my new doctors. I live in a small mid western town in the United States and I can't find a qualified gastroenterologist within a 2 hours drive from my home. I hope with my story I might help someone avoid what I had to go through. What a difference a good doctor or surgeon makes. The best of luck and health to all.

[deidre4646352]

I am 48 years old and have been dependent on stimulant laxatives for 28 years.  I began having chronic constipation very young, started using them and now all these years have passed.  I am certain my intestine is forever damaged.  I've had to increase the dosage over the years to get any result.  Anyone who lives with this must understand how truly awful it is to live this way.  I came on this site because I'm considering having my large intestine removed.  I have not consulted a surgeon yet, but two years ago I went to a gastrionologist (first time I ever told anyone), and her suggestions didn't even begin to work. Flaxseed, yogurt, probionics, Miralax, Enemas.  The only thing that worked was a one time cleansing with Magnesuim Caltrate.  I have a lot of pain from the laxatives, and then sometimes they don't even work.  Just this weekend, I took 7 bisacodyl and nothing happened.  I was so bloated and sick that I went to a drug store and bought a bottle of the Magnesuim Caltrate, which I drank in the car.  I had diarrea (diarrhea) about two hours later.  Ain't this just a fun topic.  If there is anyone who has done this to themselves, or had this surgery for other reasons, your input would be very appreciated.

[Colorado9999]

I'm a 47 yr old male, 100% disabled veteran. I was diagnose with Ulcerative Colitis in the navy in 1986. IN 1988 my situation got so bad, where-as the steroid Prednisone didn't help. I was rushed to ICU and had a total Colectomy (100% large intestine removal). I didn't want to be stuck with a bag, thus was only fitted with a temp bag a few months to let my body heal. I went for 20 yrs without the bag, but suffered extreme bouts of many symptoms, which I was told were cause by "Pouchitis" where my small intestine attached to rectum and made into a small bowel kept getting badly infected. In 2008 my intestines literally shutdown, and again I was forced to ICU and surgery where I got a bag Permanently attached. It took a while to get used to, it has now been 3 years and doing better than I did before I received the bag. Less hospital stays and severe symptoms. However, the biggest problems with missing the large intestine I deal with that do take me to hospital, is even though I drink fluids like a horse, without large intestine your body absorbs very little, so I'm always very dehydrated, and this also leads to severe Electrolyte loss. Over time, this leads to extreme muscle spasms of pain, along with nausea and such. Also, since the bag was added, I too had weight gain, from being average 165 pounds at 5' 10 as male, to 195 now as result. Guess body has hard time trying to adjust to entire life of being skinny before the bag, to now jumping other way for first time in life. Hope this helps explain some of what it is like to have "Ulcerative Colitis" losing all large, later getting bag, and what each had done symptom wise in life. IN a nutshell, lot pains, sickness, misery without bag for 20 years, less now with bag, but still get other severe problems. Yes I would say colostomy bag better than my internal hookup I went with for 20 yrs.

[cononscrewedup]

Watch keeping up with your friends with alcohol.  Better to hold a glass of tea and pretend to drink rather than to drink.  My husband is 65 and thought his liver could take it and now we are looking for a liver donor.  You have had enough happen in your short life.  Guard it.  Protect it.

[cononscrewedup]

My colon is so ruined from botched surgeries am ready to throw in the towel and just have the large intestine removed.  It can't be any worse than the inflammation, watching my died constantly, half way living.  Any ideas.

[ezie]

Hi i am currently taking the new procalopride drug , but i am not totally happy with it and feel like a guinea pig.  I visitied my registrar to talk about surgery and he informs me it will involve the removal of all my large bowel. He tells me this will mean permanent loose/watery stools  and at times i main leak onto my pants.  I've spoken to my sons and also my husband and they think i should still go ahead with this surgery.  I am almost at the big 50 and currently have colonic inertia, muscle nerve damage, slow transit, he says the right side of my bowel doesnt work and i also have diverticular disease. I used to manage to hold the water in for a while using  my home  irrigation and  wonder surely i'd be able to hold a "poo" in.  I am back to see my consultant next week to talk the surgery through in full.  Will it be as bad afterwards as they are saying.Id appreciate some views on this from people who have had this surgery. Thanks

[ezie]

Hi just to add to my previous query, do most people gain alot of weight after a total colon resection?

[caroline717]

I had my colon removed 3 years ago after the initial surgery I had a temporary bag which was reversed 3 month s after surgery.  Whilst I had the bag i had to watch everything I ate after it was reversed I eat everything I want.  I am having issues with weight gain and not sure why.  Yes you will need to go to the bathroom a lot more than before but for me that is great as I could not go for weeks so I am better off.  Good luck with everything

[life65]

My story,30yrs old in dec 1995,passing blood and passing out,been passing blood for 2-3 yrs..(ended up divorced cause i spent time at the drs office cause the ex thought i was having an affair)....no other symptoms..went to my gp and he did an occult blood test cause he thought i was exaggerating my symptoms.he set me up with another dr to get a colonoscopy done..this was the last time i saw him..after this colonoscopy,the dr found that i had fap and he told me i was going to have to have my entire l.intestine removed...he goes on to ask me why the hell i hadnt ever went to the dr!i asked why?he said he been practicing med for close to 40 years and had never seen anybody this bad!i had polyps sitting on top of polyps which were on top of polyps..well we scheduled surgery..now he never performed this b4 BUT he went to uab in birmingham and saw it done a few times..went home,..after a week or so..after a few things happen i knew about at the hospital where it was to take place...i decided to go back home to pennsylvania..i called my ex to find me a gastro specialist..the original dr was upset he wouldnt get to play guiena pig on me..i went home to my parents,ex and two kids..i went to the gastro specialist..he ended up doing the same colonoscopy again cause he didnt recieve the paperwork from the dr in bama.he saw what mess i was in..well he sent me to see one of the chief professors of gastro down at upmc in pittsburg ..dr wolfgang shraut..he was nice..he gave me the run down..he ended up removing all of my intestine,all of my rectum..for exception of the sphincter muscle for bowel control..kept cutting on small intestine until he got enough clear looking organ and then made a rectum from a portion at the end and using a piece of rubber..connected me back up.i ended up with a colostomy bag..to which i ended up being allergic to silicone paste and wafers and i blistered out.got the bag removed july 3,96 so independence day brings a completely new meaning to me!:)i waited one month,went back to my gm dr who i saw the last time in dec 95..i had already scheduled an appt to see him so he would release me to go back to work cause i had a hell of alot of medical bills my insurance refused to cover.i ended up defying dr schrauts orders by waiting at least one year before i went back to work.well,u know how the nurse will take u to an exam room and then when the dr gets caught up..he shows up?!well,this has been the one and only time that i was taken to an exam room and the dr was in there waiting for me!well, he was as white as his coat and just nodded his head and apologized to me..i told it was ok and that i understood because i had no symptoms but passing blood but because they were actual clots thats why the occult blood test didnt work..he then told me that in actuality i was dying and he failed to listen to me but he promised that if i even came down with a sniffle..into the hospital i go..which he did...now,since then..and this is why its so important..in 2003,i was found to have a goiter by my pulumonologist..i had ultrasound and needle biop done once a year..that dr wasnt going to do anything cause it was round...this,too,was in 2003 ..time went on..same thing..its just there..no changes ..dec 2009...my voice would go in and out..the goiter never changed shape nor size..i was feeling really bad...i went to the dr who bought out the dr who let go back to work on august 18,1996 after the resection..i told him i wanted a t3.t4 and tsh levels checked..no messing around!thanks to the invention of the comp and internet..anybody can do research and with process of elimination can just about pinpoint the root of any issue..not that u dont need drs cause u still need to go have periodic dr visits..well,got the blood test back,...he wanted to see me so i called hubby and we went to see him together...the results he said which was an issue was that i had mono!..i said mono!i looked at him and told him he was full of ****!i walked out from there and didnt go back...i told hubby to get me a list of endo drs in ttown..he gave me a list of names and i picked one out..i told him to make me an appt...now this is some info for those of u who have FAP.. u have a 60-70% increase just with that trait,which has absolutely nothing to do with outside influences such as diet!its completely genetic!

[to be happy again]

What a roller coaster ride you have been on.  I am sorry that you had to go through all of that and at such young age.  At 40 years of age I started having colonoscopies because my father had a colectomy done due to colon CA at 71 (he is now 96) and was found to have hundreds of polyps.  I am 63 with a mutation of the FAP gene that has not been identified yet.  This was found out in the summer of last year after I had a perforated colon when a polyp was removed and had 4 inches of my colon removed emergently.  My surgeon who I absolutely love pushed me to have genetic counseling and insisted that my children get checked ASAP for colonic polyps.  My daughter at 33 had it first and had over 50 very tiny polyps removed and needs to have another one next month to hopefully remove the rest of them. My son at age 29 had his colonoscopy and had 4 removed  and my oldest son at 35 has a colonoscopy and had no polyps.  I was told that I need to have my colon removed and have my rectum attached to my small bowel which I am going to do. Originally it was to be in May or June of this year but I have decided to push it off until January since I am not sure how I will react to the surgery and how long it will take my body to adjust.  My daughter will need to have the surgery too but most likely at an earlier age than me.  I as well as my children have been very fortunate to live in a city that can offer so much. Having this surgery on an elective basis can be done laproscopically as compared to my first surgery which has left me with a 6-7" scar but at my age, wearing bikinis is not an option. I urge anyone that can remotely have FAP or any mutations of it to get to a physician and listen to your instincts.  Its not fun going through the surgery but it beats the alternative.

I wish you the best of luck and hope that your life becomes easier.

[dornoch]

Hi. I am sitting here crying as this is the most positive thing I have read so far.
My Dr says I am running out of options so surgery is looming in the not too distant future..I am very scared.
Thank you for the advice and positive comments

[litho14P]

My daughter had her large intestine removed last year in the Summer of 2011.  She had an ostomy bag ( which she dealt with very well) for about 2 months.  She was eleven when she had all three surgeries.  Since her takedown she initially had to be admitted back into the hospital due to scar tissue which caused a blockage--very scary.  She was better within a week and since has been doing really well.  I need to add that she did have a Prolaspe Pouch but her surgeon did not seem to be too concerned about this and it happened only one time since.  She goes to the bathroom about five times a day and it's just become part of her life.  She is playing soccer again and enjoying school.  She is such a smart little girl and I know someday this happened for a reason and she is going to do something great with what she has experienced.  

[LeonsDad19]

im Very sorry To hear that about your grandchild. and i really hope the child is okay. im on this site because my son had his entire large bowel removed and half  of his small intestine. I also am looking for a transplant for my son please god. How i came accross this site i typed into the computer  can i give my son my large intestine. my son is now 2 he has a stoma. i feel for you and the child i honestly do. I dont mean to be bleak but bowel transplant is very tricky and infections can happen that is why i am wondering can my son have mine since i am his father. you are right they are lucky to have some small or large intestine at all. two and a half years ago i myself was diagnosed with M S i have the mildest form thank god but when i first found out i was miserable tought i was finished then my son was born with a problem he had surgery at 3 weeks old. all my problems went out the window watching him i forgot i had anything at all. Its weird i think i convinced myself to stay strong for him. may your grandchild have the very best of luck i him or her the best. my son is lucky to even have half a small intestine. take care may there be something around the corner.

[WisconsinFarmGirl]

I had mine removed in 2002 due to slow transit caused by nerve damage in my spine. I actually felt much better after the surgery. I live in rural area and we drove to the big university hospital instead of having it done at our local hospital. I am very thankful that I did because a few years ago I had a bowel obstruction (no more bagels for me) and the surgeon not only wanted to operate but to give me a colostomy. I don't have one now. I have a straight line from stomach to small bowel. We had a yelling match in my hospital room because I wouldn't let him do the surgery. I've had a couple of bowel obstructions since, and with an ng tube and a couple of days they resolve themselves. I was 32 and a newlywed when I had my bowel removed. My system swings back and forth. I go 3 or 4 times a day, then not for 2 days. I just chew really, really well and watch what I eat. I do have to really watch to make sure I get enough fluids. I walk marathons and get deyhdrated really easily. Overall, I'm glad I had the surgery but would advise shopping around for a good doctor. My quality of life is better now than it was before.
Oh, I had a major open procedure. Bikini line incision that went more than half way around my body and a verticle almost to my sternum. I'm prone to hernias, but really no huge or terrible effects from it. It's major surgery, but after the 3rd day you'll feel much better. I'd had over 12 major abdominal surgeries prior to this one, and it really wasn't any worse than when I had my gallbladder out.

[sbear67]

Hello I'm trying to make a decission to have my entire colon removed because of Diverticalitcs. So did you have surgery? If you did how are feeling? My wife and I are sad but she says I should go ahead and have the surgery. Also I'm scared I'm 45 overwieght and diabetic (type2) any suggestions? My name is Shannon

[ng1031]

This is my story which sounds similiar to yours.. did you end up having the surgery??

http://www.medhelp.org/posts/Undiagnosed-Symptoms/Undiagnosed-Digestive-Issues/show/1739309?personal_page_id=2196886

[ng1031]

I have a personal question...

For those of you who have had your large intestine removed and replaced with a j pouch (small intestine hooked up to your rectum).. I understand that it takes some time to get use to going to the bathroom ALOT.. any stories of how bad this is and how long it took to get use to or your body to adjust. Also I have a fear.. its a weird one but its life.... did anyone have accidents during things like sex???

[lilly5955]

It was very refreshing to read your post. I had my colon removed in 2006, lost about 50 pounds initially. And it seemed like I awoke one morning and it was all back, I have also had to have my gallbladder removed last year. And I think I am dancing with menopause. So at 50 I am heavier than I have ever been. My diet too like your is pretty restrictive. And yes the inability to eat chocolate breaks my heart too. I don't seems to know what to eat anymore. But I do know that anything from the ground is the worst. I have a difficult time with mushrooms, potatoes, carrots. Lettuce even spinach and other leafy greens are also troublesome, I find that cabbage is about the best thing next to white rice. But like I said I don't even know what to eat. I have packed on about 10 pounds recently and am not sure what I am doing differently that I have been. I don't eat bread because of the carbs. I have given up baked goodies because of the sugar and the turmoil it puts my body into. Pop is a thing of the past. I do eat a lot of fresh fruit but I just cant imagine that has me tipping the scales. I don't use the fiber any longer or any medications. And I drink about 120oz of water a day. If there is anyone out there who reads this and can point me in a direction to weight loss. Or please tell me what I am doing wrong it would be greatly appreciated. Thank you.

[JoannaW]

my grandson the same as you the probkem is he used to have colon bag till he was 9 months old all of his lower intentine are gone he has small colon d pulled it down to his rectum he told me he has trouble feeling when he has to go to the bathroom he now 4 half years old smart kid talks well but learning little bit behind did u have trouble knowing when u had to go bathroom ? he goes allot !! he is very bashful about wearing pull ups now the stupid drs are telling her to potty train him he confused.I like to know how you cope growing up thanks looking forward to hearing from you JoannaW

[JoannaW]

if u lose weight dr recommened my grandson eat high carb diet he gaining some days he will not eat other days he eats tons. just giving u what i learned from my daughter

[JoannaW]

did u lose lots of weight as a child? my grandson did doctor told daughter to have him eat high carb diet. he poops allot he having trouble figure out when he has to go because he said he can not feel it when it just comes out all of his lower intentine are removed as a baby he only has intestine .I worry about how will he cope gong to school with this problem he now 4 half how did u cope in school? JoannaW

[chrismb55]

Can anyone tell me how they managed work with the side effects of the surgery?  I think i am facing the surgery very soon.  I was diagnosed with Crohn's from my esophagus to my rectum 21 years ago.  I was told that it is very rare to have Crohn's outside of the large intestine.  Over the last year, my condition has taken a major turn for the worst and medication isn't working.  I "go" very frequently now before the surgery and from what I have read, I face the same frequencies after the surgery.  With my work, I am on the road a lot and I never know when I can leave home (the bathroom).  It has gotten so bad that I finally took a medical leave.  I scares me to know that the reason I had to take off from work will not be corrected after the surgery.  

[maax2]

Use disposable wet wipes, Warm bath water helps with the pain. Oxicodon helps . Avoid chocolate.

[ng1031]

Just an update..

I got into the Mayo Clinic in MN and finally am getting answers. I had a slow transit study that was a 48 hour one as well as an EKG more blood work and a colonic manometry test.  I have a very long, verry loopy slow transit colon. My pacemaker cells in my right side of my colon are dead or dieing off and it is causing me to back up all the way to my small intestine. IBS and SIBO are no longer even diagnosed for me as the symptoms of those happen in patients who have slow transit etc.  I was on Resolor for one month and that did not work. I am now setting up my surgery! The surgery I will be having is called laparoscopic colectomy with ileorectal anastomosis and I will not need a colostomy bag. My surgery will also take place at Mayo Clinic. Another 7 hour drive from home but well worth it! FINALLY getting answers!!!

[susanne1963]

Hi Kathy,
     I am 49 yrs old (female) , had my colon removed and resection of small intestine to rectum 1 1/2 yr. ago . I am starting to have issues with bloating , hunger , indigestion, until now I have been doing ok except constantly dealing with staying hydrated . I had mine removed due to polyps (familial polyposis). Kinda frustrated with "food issues", one Dr. says eat high fiber,another said "no" . Any info. would be greatly appreciated. Thanks...Susanne

[ng1031]

I had my surgery on the 18th.

I was released on the 25th

I formed an ileus and was readmitted by ambulance to the hospital and ended up staying 2 more weeks until everything finally started to work. I was in a LOT of pain that was controlled by morphine (lots of it)

I am finally home after 3 weeks in the hospital at Mayo. I am now weening off the narcotics and experiencing the pains and pings from surgery that you normally experience. I am still on liquid and mushy foods even though I am going on 4 weeks because of the ileus putting me behind schedule.

[Kirst1967]

Wow I've just read your story and could have written it word for word
I had my large bowel/intestine removed Sept 2012 after having an ileostomy for a year. It was a very rough time, the surgery painful and with several complications. I too lost a lot of weight very quickly but like you it was like I woke up one morning and it had all piled back on and some!!! I'm restricted in what I eat and have tried to follow a low residue diet as best I can but I'm steadily gaining weight and feeling dreadful with it
You wrote your comments sometime ago but I'd love to hear if you've improved and if so what did you do?..