# colon removal for IBS?



## Puppy3D (Jul 28, 2004)

HelloI have this disease since 9 years. And the symptoms got worse over the years. I have IBS with mild C and HORRIBLE chronic pain. I`ve tried every single drug under the sun and have met about 40 different spezialists, docs, and also psychiatrist etc . Also I did many natural treatments and thearpies. Everything without big result. Doc`s are no help at all. Because of the pain, I cannot work since 5 years, and I`m 28 years old, I have say. I`mean this is really life threat for me. I`ve lost nearly all social contacts and friends, because of this disease and at home I have put a heating bottle on my tummy and this every hour/every day/every week/ every month/ every year. I even have to live sometimes at my parents because I get so depressed and isolated. My doc told me that I have a big chance that IBS goes away after 4 years. Now I have this for 9 years and the pain get only worse. I`ve no spasm at all but abdominal tenderness and tension pain. It feels like I have thick elastic band around my guts. Horrible. All my symptoms are located in the colon and not small intestine. That`s why I consider colectomy. Since years I thinking about it or colon removal and I made a post some years ago at this board. I`m trying to collect many information about this from the people who have done colectomy or similar surgery. I made an account in german stoma forum to find out more about the live quality of these people. Also I had contact with several doctors and of course my gastro doc. I`m trying to hear many different opinions as possible to get a clearer picture. Of course Doc`s are all against it. My gasto doc wouldn`t do it. He thinks that I probably will have the same pain after the colectomy because the gut nerves-netting(?) won`t be removed. He said that when I does colon removal at someone with functional disease (like Megacolon) the patient has higher risk to have pain. But people with non-functional gut disease like Colitis are less tend to develop pain after colectomy. Other doctors I`ve talked with had similar opinions. Of course excepted that. , no suprise for me. The opinion from my gasto doc sounds logic to me, but it`s hard to say what will happen in my case. I know that docs are very often cautious and trying to protect their patients and probably also themselves and their opinions. But this doesn`t help in my case. With the colon in my body I have to live/suffer the rest of my life like this. Differerent picture I got when I posted at stoma bulletin board. I`ve read opinions from people who have done colectomy and mostly all have gain more live quality with the stoma bag. They would not go back if they could. Of course hey had different diseases like Colon cancer or Colitis but also megacolon. Some had also fight for the surgery for a long time till doctor did it. I`m now trying to make a picture for myself and find out if`s this could be an option or not. What`s your opinion for colectomy? By the way, I know that living with a stoma bag is not the best solution and I that the scar can make pain etc. etc. I won`t care about smell, or what strangers think about the bag. I`ve the impression that colectomy with stoma bag would give me a piece of my life back in my hands on a very low level, , something that I will never reach with IBS.


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## Kathleen M. (Nov 16, 1999)

We have had people here that have even more pain that is even harder to treat after colon removal.I think that risk is very real and when it seems more likely they will make things worse than make things better doctors are really not likely to do a surgery.The problem is they don't know if they will make you 10X worse or make you better and it is something you can't undo.FWIW when my IBS was bad I was in extreme pain with all over tenderness. I could barely walk and I had to walk 1/2 mile from where I could park to my office. I know how hard it is to work in that pain, but I actually found work helped a lot. Having something to do other than lie on the couch and think of nothing but the pain really did make life much better for me.Hope you find something to help.


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## SpAsMaN* (May 11, 2002)

I did some research into this.The less risky surgery is a so-called "temporary ileostomy".Where you leave some or all the colon in place and get a bag connected to the small bowel.If you have cecum pain,it migth be a solution.I'm not a doctor but in my case,i feel my lower sigmoid colon near my bladder.I don't think i want scalpel in this area so i would try to keep this lower part in there,somewhat by-pass.If you don't have pain/distention in the rigth side,you can also get a left side colostomy with a rigth side MACE to flush by the appendice.This way you could even walk around with a patch instead of a bag between 2 flush.Google UOAA.org There is people who talk about irrigation.The problem with irrigation,it seems non-recomanded with IBS.Most of the time what they do is ileo-anastomis where they connect the small bowel to the rectum directly.But with lower colon removal there is risk to hurt the penis nerve,affecting your sexdrive.Remember the lower colon innervate your sexual area.But with the ileo-stomy you don't have this risk.It migth be the best bet but i cannot confirm as i haven't try it myself.


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## SpAsMaN* (May 11, 2002)

Puppy,you should ask a colo-rectal surgeon or general surgeon about stomy or/and colon removal.It's them that do this so they may have an idea about the results.I think ileostomy could help your pain but remember,the colon hydrat your body by absorbing water.It is likely you could need to drink more but again these are questions for the surgeon.Keep getting informations and alternatives Puppy.You will get better.


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## annie7 (Aug 16, 2002)

Spasman--thanks for the research you've done and the info you posted. i googled the uoaa org-very informative. and yes you're right--they did say that ibs was a contra indication for the irrigation. but still..ever since Babender posted way back when about his experience with constipation and the mace procedure it's kind of been a fantasy of mine--a last ditch attempt if i get much worse. although like he said it's a struggle to find a surgeon who will do this. plus in my case i really doubt my insurance would pay for it--back when zelnorm was available they wouldn't even pay for that..Puppy--i really feel for you. it's so hard, isn't it. but yes, like Spasman said, keep researching, trying everything (i know you have but please don't give up) there are some new drugs in the pipeline like linaclotide and prucalopride (resolor) and it sounds like movetis has filed for marketing approval for resolor in europe this past may. http://www.medicalnewstoday.com/printerfri...p?newsid=126428 http://www.medscape.com/viewarticle/581863_print


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