Have IBS and think about colectomy

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sarmiento
New Member


Date Joined Apr 2009
Total Posts : 18
   Posted 4/27/2009 8:03 AM (GMT -7)   
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.

jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 4/27/2009 9:11 AM (GMT -7)   
I am so sorry that you are suffering so much. You are a perfect example of how horrible IBS can be.

I had my colon removed due to ulcerative colitis and I am feeling very well.
I had no quality of life just like you, and I am telling you I have a new lease on life.

I eventually will have a jpouch which is when the surgeon creates an internal pouch using a section of the small intestine. This pouch will function as the colon.
For now, I have a bag and am getting used to it.
As far as the surgery, it is major surgery. I spent 5 days in the hospital and have spent the last 5 weeks recovering at home. But after 2 weeks I felt considerably better from the surgical pain. Sometimes there are complications and some people spend longer than 5 days in the hospital.

I don't know that doctors will perform this surgery for IBS, but if I were you I would research as much as possible. IF you live in the U.S. research the Mayo Clinic and Cleveland Clinic. These are some of the top facilities. There are some other very reputable and skilled surgeons at other centers and I am sure someone will chime in with names and locaitons.

I wish you the very best. If you are seriously considering this and find out that you have a good chance of success, this is the place for lots of info and support.

Good Luck
Jackie, 43
Pancolitis, DX October 06

Lexapro, Synthroid, Protonix,
Tapering prednisone down to 10 mg

Surgery March 13th- Total Colectomy
Jpouch surgery to be done in 3 steps


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/27/2009 3:07 PM (GMT -7)   
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!

jjfromga
Regular Member


Date Joined Mar 2009
Total Posts : 48
   Posted 4/27/2009 4:12 PM (GMT -7)   
Sarmiento,
I do not have IBS, but I have had terrible constipation for years from pelvic floor dysfuction. The muscles just don't work. I have no quality of life and I am miserable all the time. I am only 26 and I know that I want my life back. I've seen several doctors- none of which have given me a solution. I just saw my doctor ok Monday and basically asked for a colostomy. I am meeting with him next week to finalize plans.
Basically I think you just have to take charge at some point. Nobody want to do this for me because they say I'm too young...I think I'm too young to be missing out on so much of my life. You just need to do what's right for you. Research it and decide what you want, then advocate for your self..no one else will. Keep me updated I'd like to know what happens with you. I am just beginning this journey myself.
Lauren
Chronic Constipation
Pelvic Floor Dysfunction
Botox Injections-2008
Biofeedback- currently


sarmiento
New Member


Date Joined Apr 2009
Total Posts : 18
   Posted 4/29/2009 3:47 PM (GMT -7)   
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. sad
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.

spasman
Regular Member


Date Joined Jul 2006
Total Posts : 361
   Posted 4/29/2009 9:25 PM (GMT -7)   
Sarmiento my old friend.I have the same symptoms as you+PFD.

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.

Here a link about your question:

http://www.ncbi.nlm.nih.gov/pubmed/15206974?ordinalpos=61&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum


-IBS induced by NSAID
-IBS-A,C with meteorism(trapped gas) and pubic burning-
 


sarmiento
New Member


Date Joined Apr 2009
Total Posts : 18
   Posted 4/30/2009 11:33 AM (GMT -7)   
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.

spasman
Regular Member


Date Joined Jul 2006
Total Posts : 361
   Posted 4/30/2009 1:00 PM (GMT -7)   

You could get what they call temporary ileo while leaving the colon in place.

This would minimize removal pain.

 


-IBS induced by NSAID
-IBS-A,C with meteorism(trapped gas) and pubic burning-
 


sarmiento
New Member


Date Joined Apr 2009
Total Posts : 18
   Posted 5/9/2009 4:08 PM (GMT -7)   
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.

spasman
Regular Member


Date Joined Jul 2006
Total Posts : 361
   Posted 5/9/2009 10:06 PM (GMT -7)   

There is a test called colonic manometry.

It record how the colon works.


-IBS induced by NSAID
-IBS-A,C with meteorism(trapped gas) and pubic burning-
 


spasman
Regular Member


Date Joined Jul 2006
Total Posts : 361
   Posted 5/10/2009 3:25 PM (GMT -7)   

Sarmiento,try Bentyl 30min. before meals.

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


-IBS induced by NSAID
-IBS-A,C with meteorism(trapped gas) and pubic burning-
 


sarmiento
New Member


Date Joined Apr 2009
Total Posts : 18
   Posted 5/12/2009 7:01 AM (GMT -7)   
Spasman, I have IBS with ZERO Spasm. Never had this type of pain . So these antispasmodics don`t work for me.
IBS can do a lot of diffrent pains. What I`m trying for 1 week are Curcuma caps. But that didnt change anything. I will continue to take these caps for 2 weeks.

sarmiento
New Member


Date Joined Apr 2009
Total Posts : 18
   Posted 5/21/2009 7:43 AM (GMT -7)   
I put it up on more time.
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