Large Intestine Removal

[iAmanda]

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.