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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.
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Avatar universal
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.
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Avatar universal
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.
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Avatar universal
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
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Avatar universal
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.
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Avatar universal
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.
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Avatar universal
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.
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Avatar universal
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.
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Avatar universal
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 :)
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Avatar universal
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.
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Avatar universal
    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
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Avatar universal
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
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Avatar universal
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.
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Avatar universal
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.  
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Avatar universal
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!
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Avatar universal
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.  
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Avatar universal
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!
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Avatar universal
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
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Avatar universal
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.
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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.
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Avatar universal
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.
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Avatar universal
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.
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Avatar universal
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
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Avatar universal
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.  
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Avatar universal
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.

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