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Subtotal Colectomy- Risks & Complications?

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Irritable Bowel Syndrome
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Posted 6/22/2009 4:31 AM (GMT 0)
I am a 28 year old woman living with MS (diagnosed when I was 23), fibromyalgia and IBS. As do many people with MS, I suffer from MAJOR problems with my digestive system. It is hard to pinpoint what is the fault of the MS and what isn't, however the docs are pretty sure the MS is causing my severe constipation (1 BM every 1-2 wks). I have tried EVERY medication (OTC and Rx) out there, and changed my diet repeatedly (no gluten, no lactose). Currently I take 3 T of mineral oil per night and 6 stool softeners a day- nothing helps. I have been diagnosed with severe slow transit chronic constipation, and my team of doctors are recommending a subtotal colectomy.

My question is in regards to this procedure & the risks/complications that come with it- what can go wrong? What are the effects I'd have to live with if the surgery goes wrong? What are the risks? How is the recovery process?? I'm having trouble finding information on this surgery from "real" people. It's a very serious surgery and I want to make sure I am making the best and most well informed decision.

Thanks, any input would be appreciated.
Posted 6/22/2009 6:56 PM (GMT 0)
Hi

I also consider colectomy. I have IBS with constipation and horrible chronic pain. Many doctors with which I ve discused are not very happy with my colectomy plans. There is a risk that I will wake up after surgery with more pain.
Posted 6/22/2009 8:06 PM (GMT 0)

Hi,

I answered your post on the ostomy site about the subtotal but I will give the info here too so others can see it.  I had an open subtotal last July for colonic interia.  My colon had dropped way down and stretched as well as had many strictures in it.  I took 4 capfuls of miralax, 4 tablespoons of lactulose and 2 amitizas every day a would only produce pellet like bms every 2 weeks.  After 5 different GI drs I finally found one that figured out what needed to be done and he recommeded the colectomy.

My surgery was open due to so many previous abdominal surgeries but it can be done laparoscially.  I was in the hospital for 5 days, had NO complications and went back to work in 6 weeks.  When I first had the surgery I had very frequent bms, 20+ a day but I was always able to control them; I just knew where every bathroom was.  By the 6th week I was down to 8-10 bms a day, it took 9 mos for my system to adjust to 2-3 a day.  I am still on the low residue diet that they put you on when you first have the surgery because it took my body so long to adjust and whenever I would try one of the fiber foods I would have severe diarrhea.

I tried to take metamucil and imodium to slow things down but they stopped things altogether so my dr wouldn't let me take them that's why I remain on the low residue diet.

It can be a difficult surgery but if you have had abdominal surgeries before it isn't too bad.  The most important thing is to let your body heal and try not to do things too quickly.   Even though I went back to work after 6 weeks, it took months for my strenth to come back and for me to really feel good.

As with any surgery there can be risks and complications but I personally did not have any and I am usually one that always has something go wrong.  I have never regretted having this surgery and am always getting compliments on how healthy I look now, even from other drs.

I would recommend this to anyone who suffers from constipation; I didn't realize how sick I was until I had this surgery.

If you have any questions I will gladly get back to you.

I wish you the best,

Judy

Posted 1/13/2010 1:57 PM (GMT 0)
it's really nice to hear this...i'm so happy for you that it all went well. i'm scheulded to have my surgery done this coming feburary first. i have suffered for years and this is the first surgeon to do this. all g i docs have said i needed the surgery though. i am scared out of my mind but trying to remain positive, i am 24 and was so worried that this surgery could ruin my life. but at the same time i'm just so ready to be healthy again!
Posted 1/28/2010 5:08 AM (GMT 0)
Hi Cravelife,

I just had a total colectomy (removed my colon and attached my small intestine directly to my rectum, no bag!!!!!) on Jan. 7th, 2010 and I am 40 years old. I wish I would of had this surgery a long time ago. It is such a blessing just to be able to go to the bathroom!!!. I still have frequent diarrhea, but this seems to be improving a bit. I don't mind having the diarrhea because at least I am going and am not in pain from constipation. I am having some rectal spasms that usually only last for a few seconds. I am very hopeful that this is temporary and will calm down as my body adjusts and heals.

Even with this pain I am so glad I finally had this surgery done!

Are you able to get to the bathroom quickly on your own with your MS?

When you say subtotal colectomy do you mean removing your colon only and not any part of your rectum? Have you had tests to check your small intestine and your rectum?

Kristen

Kristen, please shorten your signature to 10 lines or fewer.  The Forum rules says our signatures should not be more than 10 lines (with the exception of Prostate Cancer).  Try combining the information or eliminating some to whittle it down.  Thanks.

Post Edited By Moderator (LanieG) : 2/8/2010 2:11:54 PM (GMT-7)

Posted 1/28/2010 8:02 PM (GMT 0)

Kisten,did you had a barium enema or colonoscopy prior to the CT scan?

If so,did they saw the diverticulosis?


Posted 2/6/2010 1:41 AM (GMT 0)
spasman,

I had a colonoscopy that revealed that I had 3 polps and on the previous CT Scan that same area the radiologist said it was diverticulitis. Anyway, what they thought to be diverticulitis via CT Scan turned out to be 3 polyps. I think this is important to note that they can't always truly tell what is going on by the CT Scans until they actually go in.

Post Edited By Moderator (LanieG) : 2/8/2010 2:12:07 PM (GMT-7)

Posted 3/15/2010 8:07 PM (GMT 0)
Kristen,

I'm 35 and going in for the same surgery within a month. Are you still feeling ok? I'd be relieved to have loose stool rather than none (Without the help of dozen colon cleansers) anything i should be prepared for. diet change, energy level, how long till you could work again, exercise, have sex?
thanks so much for any info you could give. Most of the posts seem a bit negative so I was thrilled to hear a good experience.
Posted 3/16/2010 1:45 AM (GMT 0)
Don't let us scare you. There have been many people that have been through healingwell that have had total colectomies and are doing great....out living their lives and no longer posting on here. I have not had any surgery for my bowel problems as of yet. My situation is a little different than most seeing as I have 2 problems...colonic inertia and an outlet problem, anismus, which is a pelvic floor dysfunction. I am 39 and am looking into having a major surgery to hopefully save me some time in the restroom...having an internal ileostomy....I am sooooo scared and change my mind daily about what to do. Are you like this? I just don't want to take a chance and possibly come out of the surgery worse! GOD FORBID! YIKES
Posted 3/21/2010 12:46 AM (GMT 0)

hi! im new to this site, but was looking for people i can relate to as ive been suffering from terrible constipation since i can remember. im 26 years old and after exhausting absolutely every other option am finally going in to talk to a surgeon about a subtotal colectomy. i also have pfd which is why this post caught my eye.

if its any consolation to you i personally know someone who was diagnosed with colonic inertia and pfd. she had a total colectomy 3 years ago that was completely successful and has been given a whole new life. not that her results would be typical for everyone, but i know its hard to find people with similar problems to relate to.

i understand about being scared to have surgery. especially since theres no "right" answer that anyone can give you. ive tried to avoid surgery, but the way i see it now i dont think things can get much worse. i know ive done all i can and if theres even a small chance surgery could help me then im up for it.

stay strong :)

Posted 3/24/2010 6:19 AM (GMT 0)
get well soon
Posted 3/24/2010 5:01 PM (GMT 0)
I am having the same problem with diarrhea, though. I had a total colectomy for slow transit constipation back in Aug. 2008. my small intestine is attached to my rectum instead of a bag. I did okay for awhile after the surgery and finding out I have food intolerance to many foods, including wheat, gluten, lactose, fructose, and MSG(monosodium glutamate). Now, for the past year, I have gotten worse. I have lost so much weight, feel weak, and terrible. I have tried every type of medications, powders,liquids, and nothing helps. Even though I was diagnosed with Lyme disease, but this stuff happened before my exposure. I am so frustrated that even my G.I. doctor does not know what to do. So, I am having a second opinion.
But as for the colectomy, it is supposed to help get rid of constipation. Again, my problems are probably unrelated to my surgery, since the first person I went to about them was the colo-rectal surgeon who did my surgery. He actually sent me to the G.I. As I also mentioned that i was okay for awhile, so my issues are something else. my surgery helped me not be constipated. Before I had my surgery, my colon died and stopped functioning and I was throwing up bile, could not breathe, and was in pain horribly. Right after the surgery, when I was actually supposed to be okay, I went to the bathroom about 5-6 times a day, but the bowel will be more looser. But it will firm to a soft firm after a couple of months. There is another forum on here called Ostomies, which is an awesome resource. I actually went on there everyday before and after my surgery and it was so helpful. Good luck with everything.
Maya
Posted 1/16/2011 8:46 PM (GMT 0)
hi everyone. I am thinking of having a subtotal colectomy for colonic inertia but my gyenacolgist said it could be endo related and sai he wouldnt have his bowel removed unless it was life of death. My surgeon knows little about endo and I am worried when they take out the colon it could have adhesions and be stuck to other organs.

mY surgeon said it isnt life or death, rather that it was about quality of life and that in 95% of case everything is fine....what about teh other 5%...am scared to send up worse. I have M.E too and this is major surgey , I am scared witless.
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