Have IBS and think about colectomy

Hello everybody

I have IBS 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.

i'm not sure about your situation and how it would help, i had UC for 8 years and now have a perm ileo.
I can tell you that it gave me my life back and that there is NO smell and NO one can tell unless you tell them, i promise!
the scar will hurt at first, and then be tender for a few months, but after that it wont hurt anymore.
Good luck with getting some help!

Thank you all for your answers. They are helpful. I hope I get also some opinions form people with functional diseases who got colectomy/stoma. This would help to get a better picture.
It seems to me that docs do this surgeries for nearly every bad case of gut disease. UC, Mega Colon, colon cancer, extrem painful constipation, like Lauren has (hope you will find reflief soon). But a chronic case of IBS seems not worth it.
Really, I would like to handle the disease the other way. But that never worked. I tried every EVeRY drug, every approach , every therapy for this disease and after 10 years i still have no life. I`ve seen reams of so called specialists, chinese medics, psychiatrist etc etc. To many to name here. I get so tired of this b.......

In my opinion, if my gut is icureable, then it`s allowed to thin about surgery.

Lauren, you named it: I`m also too young for not living my life. What really bugs me is that "my" disease does not go away. A lot of disease go away after sometime, so you can say, you sat it out. But my symptoms only get worst. And after this horrible 10 years I really have no hope anymore that my future life will be diffrent from the past. That really brings me down. I`ve done everything , from meds, therap to very healthy diet and don`t see a postiv feedback from my body.

Hi Spasman. How do you do?


"I know it's ridiculous.You can decompress the colon with 2 Dulcolax as needed.
I wonder if i could get some sort of resection as well."

I know, but that doesn`t help me. Its not a problem if stool gets trapped for me. I have this pain all the time, also after BM.
I think perhaps TRPV1 receptors could lead to the cause of my pain.
http://gut.bmj.com/cgi/content/abstract/gut.2007.138982v1

If TRVP1 are the cause of my pain, then this means that it is a 100% organic issue in my case and colectomy will help. That`s my theory.
By the way, I cannot wait any longer. My IBS pain gets more critical every year. I suspect TRVP1 accumlation in the large intestine for this.
I cannot work, walk, drive car anymore since years. And its going on on on... you know that spasman.
Also there is no treatment for this around, so aynone should explain me why colectomy should not be an option.

Any other opinions from people who got colectomy with functional diseases ? That would help to decide to do surgery. I`m already in conatct with some doctors.

Sarmiento,try Bentyl 30min. before meals.

I swear it will help spasms.You do not need a prescrition.

I put it up on more time.