Crohnie considering an ileostomy

Hi, I've had Crohns for 11 years, and my right colon was removed 3 years ago. Since then I've been on Remicade, then Humira. Remicade worked really well for a while, then stopped being effective. Humira may have helped a little, but not significantly. I've also been on and off the SCD diet for 8 years. I also developed rectal ulcers, skin tags, and a rectovaginal fistula in the last 3 years.

My GI doctor is strongly recommending having my colon and rectum removed, with an ileostomy. Over the last few weeks I've developed severe pains low across the intestines, when I eat, before BMs, or just randomly, which makes me think I may have a stricture. My BMs are usually 4-5 times a day, mushy, sometimes urgent, sometimes a little blood.

Over the last two months I've had two abscesses drained, one on each labia. One of them turned into a fistula and isn't healed yet. I see a colo-rectal surgeon in 2 days to see exactly where the fistula tracts are, and figure out what treatment is best for me. I don't really want a seton. I don't want to live with a fistula. I'd rather get rid of it, so I'm hoping an advancement flap will work for me, if I choose to focus on treating the fistulas.

I hope to know more after seeing the surgeon in a couple days, but I'm weighing the options of treating the fistulas, or just going for the ileostomy so I can start to feel normal again -- although I'm not even sure what that feels like! I'm able to function, but I'm very tired, I've missed a lot of work, and I'm not able to do a lot of social activities or even chores around the house.

I've been reading other posts on this forum, and most people seem happy with their ostomies, but I wanted to share my story. Anyone's comments or experiences are appreciated. Thank you!

lynn024
44 yo female, Crohns 11 yrs, UC 10 yrs previous, Anemic (hemoglobin usually around 7-8)
Right hemicolectomy Feb 07
RV fistula and fistula exiting labia
Humira, 6MP on hold until abscess heals, following SCD diet

I have Crohn's and lived with setons (yes, plural ) for many years before my proctocolectomy. I did Remicade (Humira wasn't available then) and dealt with the rectal disease for many years before all meds stopped doing any good!

I did have a loop ileo for more than 8 years and it did help BUT it didn't heal my fistulas. My disease was so bad that my C/R Surgeon tried twice, for the advancement flap surgery, but couldn't complete the surgery because there was too much disease. That was a big disappointment but as the patient we have to try everything...don't we?!

I LOVE my ostomy...and my permanent one is so much better since I don't have fistulas to deal with, too.

Ask your doc questions! But most importantly find out how many surgeries they've done and what their success rate is...there will always be complications of some kind...but the more procedures they have done the better off you'll be!

Good luck with your journey and keep us posted on what you decide!

Post Edited (OHIO76) : 9/8/2010 7:07:02 AM (GMT-6)

I have crohns/colitis and had my permanent ileostomy and proctocolectomy done about 18months ago and as pointed out by others apart from the small annoyances living with a pouch my life is a million times better than it was before this surgery. I too had a right hemi-colectomy done a few years ago but my crohns got worse and failed lots of treatments including remicade and humira as well, I became house bound as I would always lose control of my bowel and soil myself everyday. So life couldn't be better for me now. But its not for everyone, you do need to weigh it up as you are doing and make the decision based on what your surgeon thinks and what you want. Best of luck with whatever you decide to do, keep us posted and if you have any other questions we are all only to happy to help you out. take care

lynn,
What exactly are we giving up? In my case, severe Crohn's whose mutliple surgeries resulted in strokes, on-going draining anal fistula's (13 years worth), soiling myself in the most inconvienient places, being house bound, medication.....Hm, if I had been aware that having my rectum removed and getting a colostomy would have saved me from years of all of that, i'd have done it when I was 20, not 32.

-Allie

lynn, its not giving up! Its the ultimate form of winning! It's literally taking the colon out and to the curb! you are getting your life back, winning against the disease!
Please dont anyone who is thinkign of getting an ostomy ever think of it as giving up!

     Lynn, I, like summerstorm, had ulcerative colitis, actually proctitis because my disease was confined to the rectum. 

     On June 28th I had a total colectomy with permanent ileostomy.  I had a few complications while in the hospital which were resolved.  I now have an infection in the anus.   Hopefully, because I am on a two week course of Cipro, this will be resolved without hospitalization . 

     I suffered with the colitis for twelve years and ran the gamut of meds.  For the last two years I had become prednisone dependent.  I am wondering if my present infection is related to my extended use of prednisone.

     My ileo is working like a dream....lol.  It's all this other bunk that is hindering me.

like most of all the other replies my illeo gave me back my freedom. I demanded that my surgeon do it. No way I was putting up with the meds (pred) and no control. I did have some rough patches too but I would do it again tomorrow, no question.

Everyone has to make that decision, I do not feel like I gave up..I feel like I took control.