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Temp ileostomy but CRohn's still flaring - what next?

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Posted 4/8/2012 8:10 AM (GMT 0)
It's been a while since I posted last. I had my temp oleo last July due to crohn's colitis and an anal fissure which couldn't be put under control. I was on humira for nearly 18 month before it stopped working and steroids only work above 40 mg. after my op I was doing fine , pain free, but after 3 month I was having recurring episodes of short, but high fever every 2 weeks on the spot, which came on really suddenly e.g. When driving to work. My GP put me on a high dose of steroids and a course of antibiotics, which all seemed to have calmed things down. I finished the steroids at the beginning of feb and my GI has ordered a whole lot of blood work and urinary samples to exclude any other exotic autoimmune conditions and luckily the all came back negative. And the CT enterograph I had 3weeks ago revealed left hand sided colitis once again. So the steroids have lost tear effect and I'm back in a flare within 6 weeks of weaning. I suspected it as the mucous I'm getting from my colon has increased and changed colour from white to brownish. I just came back from a 1 week business trip to India which was amazing, and I do have so much energy and want to get on with my life and career, but the pain started up on my LLQ and now I think it's just a matter of facing the inevitable and going in for a proctocolectomy and making my stoma permanent.
The questions I have now for all of you out there are:
1) how long was your stay in hospital and how long was the recovery?
2) how long was it until you could go back to work?
3) for those who had a temp ileo beforehand: did you stoma change after the surgery, e.g. Shape or location? Do they have to cut around it to remove the defuntioned end?
4) did you have your colon, rectum and anus removed in one surgery or did you keep your bum?
I hope you can answer some of my questions, as I'm afraid that this will be a much bigger op than the first one.
Thanks Monika
Posted 4/8/2012 1:27 PM (GMT 0)
For me, the proctocolectomy was harder than any other surgery. I'm not saying this to scare you, it was my experience, and some have an easier time.

1) I was in the hospital about 10 days.

2) I am lucky and can work at home so I was working in the hospital:-/ but it would have been 8 weeks if I had to go to an office.

3) My stoma did change, but not a lot. I think it had more to do with a different surgeon doing my last surgery than anything else. I have had 3 stomas, all in the same spot, without any issues.

4) I had colon, rectum and anus removed and was sewn closed.

I had my second temp ileo for 8 years before meds failed and I had had enough! I know why I waited to do my proctocolectomy but looking back I wish I had done it sooner. It is worth the pain/recovery/complications to get that sick organ out of your body and get on with life!!

Ask any questions...Your recovery will be aided if your mind is at ease!!
Posted 4/8/2012 1:33 PM (GMT 0)
Monika, so sorry that you're flaring again.....what a drag after all you've been through. Some thoughts on your questions:

I was in the hospital for 5 nights after my surgery, where I had my colon and rectum removed and anus sewn shut. I had never had a temporary stoma before that.

Recovery has been long, because I was very sick at the time of surgery and on a lot of prednisone. I had an abscess a week after I got home from the hospital and had to go back in for a few more days. On the CT for the abscess they found a blood clot, and I had to go on coumadin for several months.

Due to the specifics of my job (teaching -- and there was a sub for me for the whole semester), I didn't go back to my regular work right away. For me it was about 2-3 months before I could have gone back. For many others it's shorter.

I have had a complication that happens, but most people dont' get, w/the perineal wound not healing . I had to have another surgery 7 months after the first for that, and it still gives me some problems. But overall, that's nothing compared to flaring, and my quality of life is much, much better since I had the colectomy.

Glad your trip was amazing, and wishing you the best w/the next steps.
Posted 4/9/2012 9:28 PM (GMT 0)
My husband has had Crohns for 25 yrs and had been postponing this surgery (total colostomy with an end ileostomy) for the past 3 yrs in hopes that a new treatment would be available. He had his colon and rectum removed, and his anus sewn shut this past Friday, so today is Day 4 in the hospital. They said he could possibly go home tomorrow since he's progressing really well, but he's still nervous and doesn't feel ready to go home yet; maybe another day/night in the hospital. He had a temp ileostomy 7 yrs ago for 3 mos. Recovery was about 8 wks and he worked for 4wks before having the reversal surgery. Recovery for that one was longer, an extra 4-6 wks due to an open wound from an infection he had prior to the reversal.

He preferred to have the stoma in the same location and surgeons didn't have an issue with that. I'm not sure about shape b/c he was told it would shrink/expand over the next 6 mos. His temp stoma was from a loop ileostomy and this one is from an end ileostomy, which I believe is much different. I could be wrong, but I also don't know what the difference would be.

His surgeon said there could possibly be 2 separate surgeries - the first to remove the colon and the second to remove the rectum and sew the anus shut. It really depended on what she saw during the colon removal surgery. If there was too much inflamation in the rectum, she would postpone that part of the surgery for 6 mos down the line. My husband wasn't so happy about a possible 2nd surgery, but there wasn't much he could do about that. Luckily everything looked good and he had everything done at once.

If you are offered an epidural as pain management during your surgery, I would recommend taking it. This is my husband's fifth surgery for his Crohns, but the first time an epidural was offered. He said this has been his least painful recovery post-surgery. During his last surgery (the reversal 7 yrs ago), his pain was never controlled and he was in the hospital for 10 days, all because he was still in pain. As mentioned, this is his 4th day in the hospital and they finally removed the epidural and his pain isn't too bad. The epidural was contained to the area that needed it most (his mid section), so the meds didn't affect his head too much. It's more soreness than actual pain now, and he absolutely hates the pain pills he's taking because it mostly affects his head, making him sleepy and cloud-headed.

Hope this info helps a bit and that you're feeling better soon.
Posted 4/16/2012 3:48 AM (GMT 0)
I had my surgery two years ago. It was listed as a proctocolectomy, but I still have my anus (due to healing perianal fistulas).
At the time I was 28 yrs old. This was my very first and only surgery experience.
1- I was i n the hospital for 5 days
2- after 4 weeks at home I went back work ( I was told to take 4-6 weeks off) my job is pretty laid back and not physical.
for me the worst part of recovery was these muscle spasms/cramps in my abdominal muscle right next to my stoma. The tylenol 3 helped with that though. If i knew I was going to be going out of doing light stuff around the house I would pop one of the Tylenol 3's beforehand.

My surgeons wanted me to come back when the perianal fistulas healed so they could "finish the job" and cut out my anus, but I'm not to psyched for that experience especially since I feel so well (not sure they are completely heald yet either). Life is amazing and enjoyable once again. My husband and I have been trying to conceive so that surgery will have to wait for now :)
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