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.

[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.

[Moxmom]

I hate it! Mine was removed and I am mass producing kidney stones even though I have constant water in my hand! It's been a year and I've had three surgery a to remove stones they can't figure out why now this is happening  my urine is clear I drink so much I finally going to a specialist to see how to b happy and stay alive and not feel like crap if u figure it out I could use a heads up as well

[Chrissiehk]

Hello iAmanda, this reply is a little late as I have just found and joined this forum today. Just want to know how you are doing? My husband had all of his large colon removed about 5 years ago. He is doing good besides going to the toilet a lot. I noticed he has a strange cough everytime he lies down.

[TurinaG]

I had my entire large intestine removed when i was 12. I am 40 now and have no problems. I am really small though, about 5 ft 3 in and weigh 99 lbs. But i eat whatever I want and don't worry about weight.I have 2 kids so no problems there. Generally I have tons of energy.The only fall back is that yes you will go to the bathroom alot, and when you go it will be like water mostly.Also it will be loud. I wish you luck and a speedy recovery. Turina

[Baliax]

Xry my brother is having the same problem his rectum is removed bt people say dat he will use the bags all his life is it true

[CarolK74]

Amanda, I had my large intestine removed when i was 11. I had an Ileostomy for a year. then my small intestine was connected to my rectum. It took a bit of getting used to. but i am now 42 and have 2 kids. If i can help with any questions let me know

[Sweetpipsqueak]

Do you get runny stool? My GI doctor has asked me at each biannual appointment if I was ready for a reconnection. I've had an ileostomy since I was 9 months old. I am 25 years old now. My mom has always told me to say no thanks because she thinks I'll get a leaky butt. I would like to see how I would fare with a reconnection. It would be kind of neat to wear a swimsuit in public without swim trunks too. However, it seems like a lot of people in my area have begun to follow my lead and wear swim trunks with their swimsuits. It's kinda cool and funny at the same time.

[Jackied284]

Hi amanda, i have a family member that just had their large intestines removed an hooked the small intestine to the rectum.  I am wanting to know about your diet an your activities?   How often do you go to the restroom and can it be more controlled with when you eat an how much you eat?  Any info would be greatly appreciated.  Thanks again, Jacqueline

[Jackied284]

Jackied284
Hi CarolK74, i have a family member that just had their large intestines removed an hooked the small intestine to the rectum.  I am wanting to know about your diet an your activities?   How often do you go to the restroom and can it be more controlled with when you eat an how much you eat?  Any info would be greatly appreciated.  Thanks again, Jacqueline

[ScottiC]

Hey ... I also have severe divertic & was wondering how you made out ? Did you eventually have the surgery ? Im contemplating having the surgery but concerned . Please give me any info or if  you can pass along any advice.
Thanks
Harvey

[Capajuca]

Has anyone checked into what we should do differently diet wise? It seems like not having much or any large intestine would cause diet deficiency syndrome or loss of good gut bacteria.

[K_rock43]

When I had my large intestine removed I was told I could not eat vegetables, fruits, nuts, ruffage, and meat that had skin on it

[Capajuca]

I had this surgery done 35 years ago for the same reason, except they left    
1 1/2 feet to conect to my rectum. It was the best thing I've ever had done. No more constipation. I do have watery BM's but that is so preferable to the bound up stomach aches I used to get. Ask your doctor why you have to have the whole bowl removed. Wouldn't 3 1/2 feet be enough?
Good luck!

[Dvine]

terri49
I also have celiac and they did not tell me that I would balloon up from my normal 90 pounds. I feel so ut of control.  met with y surgeon all of about 10 minutes before I had my operation and never saw her after that. This was at the Mayo Clinic. I only saw her team after that and her nurse practitioner I had lots of coplicaions. one in which they over drugged me and I stopped breathing and they called  the emergency ICU response team and they had to give me 2 different shots to bring me out of the coma. Still did not see my surgeon, Now I have ballooned up from 90 to 100 pounds 10 months later so what's t to be 3 yrs from now. Never told about any chances of weight gain.

[Keek620]

I gained 30 lbs in less than 24hrs before my total colectomy, said it was because I wasn't absorbing/getting enough protein + nutrients. It's been 2 months and I'm down 20 lbs.. I feel your frustration though! :( hopefully things got better for you <3

[suecee711]

Can you share the doctors name that removed your large intestine?

I am in search of a doctor now, two have told me I need to have this done, but the specialist said he only see's one to two cases a year.

Thanks,
Sue

[Pleaze]

Hi. Have u had the surgery?  Where do you live?

[K_rock43]

I had my large intestine removed by Dr. Marc Brand at Rush University, Chicago Illinois

[bunny2817]

I had a subtotal colectomy 10 days ago and I'd like to know if this is normal. I feel like watery stools run down to my rectum every minute and cumulates slowly there until I go to the bathroom.
Just the fact it feels something is in the rectum makes me feel very uncomfortable. I believe this is because I don't have a sigmoid colon anymore so poop doesn't move to the rectum at once, but move every minute. Will this feeling go away as time passes? I don't want to sit in the toilet 24/7..

I almost cried reading all the comments here knowing so many people suffer from constipation like me. Thank you for all the comments here. I wish I was born more normally, but it is what it is and I just have to live on like this...

[Elliej83]

I had a bowel resection at 6 months old as I had necrotising enterocolitis at birth. My main problems are needing the toilet several times a day. If I'm out at a resteraunt I can easily go a few times, I always like to know where the bathrooms are.  I think anxiety makes it worse and makes me need the toilet when I probably do not need to. I do get some bloating and always lots of gurgling sounds!  Does anyone have similar. I have found fybogel to be particularly helpful once a day, twice a day seems to bung me up. Can anyone recommend any foods that are better and foods to avoid.

[susandf25]

I don't see it either.

[crazy4cats]

I still follow.  Did you get my reply?  I don't see it posted on here.

[susandf25]

9 MONTHS POST TOTAL COLECTOMY

I asked a question yesterday, on Aug. 6, 2014. I have not posted anything for many months.
I am not sure how to look for or see any responses to my posts. Can someone refresh my memory? I checked the watch list. Will I be emailed if I get any responses?
I would like to find answers to my concerns and also see how others are doing at 9 months post surgery.

[susandf25]

This I posted a few minutes ago, 8/6/14 to sam072565. Her questioned was posted many years ago but I found it still on this site. If anyone reads it, or understands my situation or has experienced this rectal pain following colectomy-please let me hear from you! Thank you!!!

I don't know if you follow this site still. I had total colectomy 9 months ago and I have the same type of pain in rectal area and very low abdomen. the surgeon said it was muscle or intestinal spasms. But, it really worries me. When it happens it is debilitating. It lasts for 1-2 hours and finally goes away. I have even taken pain medication during these times.
If you are still in this community, I'd love to here your outcome with the same probelem!

[susandf25]

I don'tknow if you follow this site still. I hadtotal colectomy 9 months ago and I have the same type of pain in rectal area and very low abdomen. the surgeon said it was muscle or intestinal spasms. But, it really worries me. When it happens it is debilitating. It lasts for 1-2 hours and finally goes away. I have even taken pain medication during these times.
If you are still in this community, I'd love to here your outcome with the same probelem!

[to be happy again]

I'm so sorry.  I never received a notice that you had responded to my post.  Of course I will share with you what I was told.   thinning food:  apple juice, red wine, beans spicy foods, licorice, spinach broccoli, apple-trap-prune juice, chocolate (which I eat anyway) and large meals.  thickening foods-applesauce, corn (although not completely digested) rice, bananas, nuts, starchy food,s bran, oatmeal, wheat, breads, pasta, cheese, creamy peanut butter.  I hope this helps.  It is pretty much trial and error with some things.  I love lentil soup but more than one small bowl and I am married to the bathroom for about 10 hours.   Hope things are going well with you.  again, I am sorry I didn't get to you sooner.

[hilimit]

hi has your grandson gone through the operation if so how did it go my son is 9 and thinking of having his large intestine removed he has ulcerative colitis

[hilimit]

hi I have a 9 year old son that a year ago was diagnose with ulcerative colitis and been thinking if removing his large intestine would be a good option just to stop all the suffering hes going through any thing you recommend on how it has worked out for you plz thanks if you can email me at ***@****  

[hilimit]

hi I have a 9 year old son that a year ago was diagnose with ulcerative colitis and been thinking if removing his large intestine would be a good option just to stop all the suffering hes going through any thing you recommend on how it has worked out for you plz thanks if you can email me at ***@****  

[CarolK74]

hi Hilimit. I was diagnosed with uc when i was 9 years old. i had my large intestine removed when i was 11. i am 42 now. I Hope your son is feeling better. the first few years without a large intestine are the hardest

[mimi3939]

I had mine removed at 25  I am now 51 up until last year  I had occasional
bowel obstruction and cramping  when I had surgery it was experimental by the way  all I can say  is it was better than the alternative .... not going to batheroom that is  now its happening again and stomach swollen   couple of things I would rather have had surgery I have had than a colostomy bag  u will  I had same surgery ur having  I was suppose to be there for a week  I was there for almost 2 months don't freak out its a horrible  surgery u will beg to get off pain meds they don't tell u it promotes ungodly gas pains and dermrol  not morphine ... morphine doesn't kill pain  it just messes up ur head good luck  and  u will be fine I will pray for u

[crazy4cats]

Blueberries & raisins?  Oh, I love blueberries, but I will take your advice.  My surgeon has been of no help regarding diet (or anything else).  Thank God for sites like this one to share and gain knowledge.  I over did it this past Memorial Day weekend and now I'm having pains I didn't have before.  Still prone to constipation.  Could you share part of your food list that might help with my elimination problem?  Thanks in advance for sharing.  

[to be happy again]

I thought I had replied to your post but I don't see it here.  If this is a repeat than I am sorry.  So I will try again.  I am surprised your surgeon didn't give you a list of foods to eat and to stay away from.  I would check with him to be on the safe side.  My surgeon had me on a very low fiber diet for 2 weeks.  I was to eat lots of protein as it helps in healing.  After 2 weeks I could eat what I wanted and it became trial and error as to what my body could handle.  He did give me a list of foods that would cause loose stools and ones that would firm them up.  I did eat a lot of applesauce.  The two foods he said to stay away from permanently are blueberries and raisins as they for some unknown reason can get stuck.  If that happens, you get hooked up to an IV in the hospital until it passes.   Also no lifting more than 5 lbs for 6 weeks.  Other than that I was pretty much on my own.  Again any questions, you should call your surgeon.  Best to be safe than sorry.  Good luck.