Remicade after ileostomy

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ivastoma

Here goes...my first question online after iliostomy surgery 1-9-15. In Aug 2013 at age 59 I suddenly had a very sore bottom. Thought it was hemorrhoids,turned out to be anal fissures. About the same time I developed canker sores inside my mouth. 2 or 3 at a time, one would disappear then 2 more would show up. Had an anal sphincterotomy Oct.2013. Both my anal surgeon and my primary doc said "This could be chrones disease." ( I had had 2 colonoscopies back in 2009 tho with no signs of it then..) Anyway, I did have a colonoscopy in dec 2013 and was promptly diagnosed with Chrones. I was immediately put on prednisone (40mg a day tapering down to zero after several weeks ) along with Apriso 4 daily.

Oh yes, let me just throw this in. I had not thrown up since 8th grade...(About 1968) until summer 2014.

So things were really fine until late June 2014. I began having lots of loose bms, was sicker than I've ever been, was diagnosed with C diff in early July 2014. Got MORE anal fissures in Sept 2014, had a kenalog injection Oct.2014 which was sloop much better than the bottom surgery I had.

Well I never got over the c diff. I took flagyl, vancomycin, and difficid and lost over 60 lbs from july 2014 - jan 2015. I changed GI docs, was put on remicaid in Oct 2014 which did absolutely nothing for me. Went to emergency room 1-8-15 and had "temporary" ileostomy surgery the next day....luckily the surgeon was same one who had done my kenalog injection in Oct. I put quotes around temporary because I chose not to be re attached. Solo I do still have my rectum and anus for now at least

All that history leads me to my question... I am still receiving remicaid infusions every 8 wks. Is this ;common ? Is there anyone out there with no large intestine who still takes remicaid? I will say for the most part I feel GREAT since surgery. Only 1 short episode of canker sores since January and I am a healthy weight and can eat most everything with no trouble so far. So here's another question. Is there anyone who has NEVER had a blockage? That is the one thing I really fear.

Thanks for any replies. I am learning solo much from y'all!

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LadyHope

Hi Ivastoma, I wanted to reply to your question about blockages. I have had my stoma for over two years and it is permanent. So far, I have only had some belly pain which ended up being gas. Interesting when my stoma toots...lol. I am pretty particular about my diet including avoiding foods that could cause blockages. I don't risk it at all. I also drink lots of fluid with my meals and chew my food very well. I was never a pineapple, coconut, grisly meat person anyway, so avoiding those items are not a problem. I enjoyed eating nuts so today I buy nut butters including almond, cashew, sunflower, peanut. I enjoy them with less chewing. I also liked raw veggies but as I got older avoided most of them because I would end up with stomach pains. I take the peels off of apples and potatoes. I am not a doctor, but I am thinking that your physician may be keeping you on the infusions b/c of the Crohn's. You may want to ask the next time you are infused. Hope this helps. Take care and keep posting. Have a nice night. LH

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kray

Hi Ivastoma,

I have had Crohn's since I was 13 years old. Skipping all the gory details, my last surgery and the last major attack will be 10 years in December.

I have been on Remicade since then and probably will be for the rest of my life. It has helped keep the Crohn's at bay. I hope this helps you.

Kray

ivastoma

Wow, I just re-read my original post from 2015. I must have had a premonition because on 10-31-15, I went to the emergency room after having no output for more than a day and throwing up several times. Turns out I had scar tissue bad enough to need lysis of adhesion surgery on 11-1-15. But I've been fine since then. Of course, the worst thing I remember about the whole thing was the G tube!

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