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New Member

Date Joined Jun 2009
Total Posts : 3
   Posted 6/21/2009 9:43 PM (GMT -7)   
Hi everyone- I am new to this website, but I am desperate to find some answers & advice re: the recommendation from my team of doctors. I am 28 years old, and have had MS since I was 23. (I also have severe fibromyalgia & IBS). There are actually more nerves in your digestive system than your brain, so it's only natural that MS patients have trouble w/ their bowels in all kinds of ways throughout the course of their disease. My main problem is severe constipation- which there is no way to tell if the MS is causing this or even how much it has caused it- and the tests revealed slow transit chronic constipation. The sidz (sp?) markers were still in my colon after 5 days, and hadn't moved much at all after day #3. (I could have told them that!)

Anyway, the docs are recommending a subtotal colectomy. I have tried to do some research, but I would like some "real" advice from people who have had this procedure. It seems like a radical surgery when you first hear about it, and my family is FREAKING OUT. My parents are convinced I need a 2nd opinoin, but I have been suffering like this for FOUR YEARS and am MISERABLE. I take 4 T of mineral oil each night, and 6 stool softeners. Over the years, I have tried EVERYTHING. I used to do the ENTIRE PREP for a colonoscopy once a week- and still wouldn't get much movement.

I really want this surgery, but I am scared. Will it affect my chances of getting pregnant? Is the recovery brutal? Will I gain weight? Will my probs go from never going at all to being tied to the bathroom? Are there major risks and complications that could occur?

Any help would be great. Thanks, Meg

Regular Member

Date Joined Aug 2008
Total Posts : 470
   Posted 6/22/2009 3:26 AM (GMT -7)   
Hi Meg,
Welcome to the site! I'm sure you're going to find a wealth of information here as well as kind, compassionate people who truly understand what you are going through and are always willing to help.
I had a subtotal last July for colonic inertia.  It was an open surgery and I have about 2 in. of my colon left.  Yes, it is a major surgery but everyone is different and the healing varies with each person.  I was in the hospital for 5 days and back to work in 6weeks.  In the beginning I had many bms like 20+ a day but they were never uncontrollable and it never left me unable to go places, I just knew were every bathroom was - lol. By 6 weeks I was down to 8-10 a day.  It took almost 9 months for my body to adjust and get down to 2-3 a day.  I continue on a low fiber diet as it has taken a long time for the bms to slow down and if I eat something with lots of fiber I have severe diarrhea.  I tried the whole metamucil, imodium route to slow things down but my bms actually stopped even with the minimal dose and I wasn't going through the constipation thing again.
I don't know about getting pregnant as I am past all of that.  I lost weight from the surgery and have never gained it back.  Some people on this site have had complications but I personally did not, my surgery went perfect as did my recovery smilewinkgrin .
The only thing I would like to offer as advice for the future; if you do this is that if you are put on antibiotics make sure your surgeon/GI dr is aware of it as it can cause problems due to you not having as much of your colon.  They have to watch what they give you and you will need probiotics.
This was the best thing I ever did.  It has changed my life and made me a healthy person again.
I wish you the very best and am willing to answer any question you have at any time,
spleen/appendix/gall bladder  removed/endometriosis/complete hysterectomy at 29/sinus surgery/numerous allergies & asthma/chronic kidney stones/ pancreatitis 3x's/2 knee surgeries-now need replacement/shoulder surgery w/ pins-which also froze following surgery/severe adhesions & scar tissue-stomach to chest-liver to ribs-colon to pelvis/severe IBS w/ constipation/subtotal colectomy 7/08-
Am now down from 17 meds a day to 8 and VERY healthy:)
There's always hope and things will get better :)

Veteran Member

Date Joined Feb 2007
Total Posts : 788
   Posted 6/22/2009 7:25 PM (GMT -7)   
Welcome Meg!

I did not have a subtotal colectomy, but had a total colectomy.
However, I do know that it should not affect your chances of getting pregnant. Unless you have a bunch of scar tissue/adhesions right near your ovaries/fallopian tubes, uterus.

The recovery is painful. But they will give you great pain medication to help control it.
You will probably feel so much better, since you won't be constipated, that it will seem very worth the pain.

Some people gain weight. Some people lose weight. It's all individual.

I think the most common complication after surgery is infection.
I had complications, but I'd do it all over again, because now I feel GREAT!

Everyone's scared. Don't be ashamed of that. It's so scary to think about this (especially after you've been through so much!)
It's a super hard decision. But you should get another opinion any way. It'll make you feel better. And your family feel better about whatever happens.
I got quite a few opinions, and 4 out of 5 said "You should have your colon out"
So I don't feel like someone else could've found a 'cure'
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 2/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
coumadin, prenatal vit.
(temporary ileostomy....maybe)

"Things turn out the best for those who make the best of the way things turn out."

New Member

Date Joined Nov 2009
Total Posts : 7
   Posted 11/10/2009 3:01 AM (GMT -7)   
Hi folks,

I had a sub total colectomy with ileostomy a year ago. Although the surgery was no walk in the park, I am very glad I had it done, I had an excellent surgeon, experienced some problems, but after years of bloating, pain taking laxatives and feeling toxic it is the best thing I have done, still have a tendency to constipation but lactulose sorts this out. Be prepared for a couple of difficult months but after that things are so much better.

Veteran Member

Date Joined Mar 2008
Total Posts : 624
   Posted 11/12/2009 2:42 AM (GMT -7)   
Hey I had a total colectomy too - i was advised by my professor that the whole colon should come out - sub totals do not work on colonic inertia in their experience - and they have had years of it... so that is somthing to think about. The only pain i had in recovery was my bowel waking up which was very painful and was from around day 3 - 5 post-op with nausea and no appetite. There is medicine for that. I only lost a little extra excess from my overloaded colon which wasnt a lot (unfortunately!).

I certainly wish i had this op years ago - but no one knew i had constipation including me! i went everyday but it felt obstructed and i had bloating and pain - towards the end and after a little bowel was removed i got 1110% worse and had to take handfuls of laxatives to go. That was a two year nightmare and now i have an ileostomy. Cant tell you about frequent loo trips as i am not there yet - i am getting my ileostomy closed in the future when my time comes.

If you are in pain and misery then you know the answer to your question - family and friends dont realise what you are going through and they are not dealing with your life.

all the best x
Karen - 47 yrs young!
1997: Diagnosed IBS
2003: Pelvic floor repair surgery (rectocele/cystocele)
2006: STARR surgery for mucosal prolapse/Obstruction
2006: Diagnosed with slow transit constipation
2007: Sigmoid resection because of partial volvulus resulting in immediate colonic inertia
March 2009: Loop Ileostomy - awaiting reversal ..hohum..

New Member

Date Joined Feb 2014
Total Posts : 2
   Posted 2/2/2014 11:06 AM (GMT -7)   
I just ran across your old post regarding your decision to have a colectomy.  Did you have the surgery?
I have MS. I'm now 42, was diagnosed at 37 and had a total colectomy just before my 41st birthday.  I would love to hear from you.  If so, I'll share more of my story if you're interested.
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