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Hi everyone I am here for some help. I was diagnosed with UC in Jan 2009 and was initally put on Lialda and Prednisone. Everytime I tried tapering off Prednisone I would flare again so I was put on 6MP and was finally able to get off Prednisone. That worked for about a year and half and I begin to get sick again. I was started on Remicade but last week during my 6th treatment I had an allergic reaction of itching and hives for 2 days! Not that the Remicade was working great anyway because my labs where begining to get worse again. Anyway I went to the doc and she recommended I have a total colectomy. She said I could try Humira but she doesn't think it really works for UC anyway and then there is this other med that has all kinds of horrible common side effects and is only about 40% effective. I am only 28 and terrified to have surgery especially if I end up with a bag. Some people are telling me to get a second opinion but based on everything I have read online and in books my GI has done everything according to plans and there are no more options besides experimental stuff. One day I am fine and accept the surgery then the next my head is spinning and I'm so confused. Do I just get the surgery and be done or go get another opinion and prolong an inevitable surgery. So confused any feedback is welcome!

 Reply posted for mckinndn.

Your story sounds very similar. I’m 24 and had an ileostomy early this year. I went in for my reversal surgery a few months later, and basically everything that could go wrong did. I actually almost died. I’m not saying this to scare you, but consider all your options and the consequences of your decisions. I still have my ileostomy and I still have the option to retry surgery to connect back to my J-Pouch, but I wasn’t prepared for the consequences of my choices. My doctor informed me that this could happen, but said that the chances we’re less than one percent.

The ileostomy allowed me to live my life, but I really wish I would have prepared myself for the “what if” factors.  Listen to what your body is telling you. Mine was a choice of pumping my body full of these drugs that really weren’t working and God only knows what long term effects they could have on my body, or get the surgery. Although the last year has been a struggle and at one point I almost lost everything.. I got the chance to actually enjoy life which has made this one of the best years of my life.

 Reply posted for mckinndn.

Your story sounds very familiar! I am 29 years old and My Crohn's flared up after having a baby in April of 2010. The last year and a half have been rough and I have been hospitalized 4 times. I also had to have 2 fistula surgeries. I have tried several medications: prednisone, asacol, humira, remicade and also 6MP. The medications would work right away for a few weeks or months and then stop working. I have also done the SCD diet and tried juicing diets. Surgery was always a last resort for me, but I decided that it was the only thing I can do to stop the rollercoaster of these strong drugs. I had my colon and rectum removed 2 weeks ago and I will have a permanent ileostomy forever. I am currently at home and recovering. The part that hurts the most is my bottom. The doctor said it would take about 6 months until that heals and it feels ok to sit without a pillow. The bag isn't that bad! I am still getting used to it, but I don't have to spend all of my time in the bathroom!! I will be back to work on 10/31. I am very glad that I had the surgery and will finally get to have my life back....medication free. Just wanted to share a recent positive experience with total colectomy. I am happy to answer any questions as I didn't know anyone who had this done prior to my sugery.

 Reply posted for mckinndn.

i went through similar situation, med after med after med - incl remicaid and humira. only thing that ever worked was prednisone but not a good long term option. i dealt for so long though that eventually got fistulas and then j-pouch was no longer an option. muscle in rectum was shot. i have the bag now and although i hate it a lot i've learned to deal. my quality of life is sooo much better so as i see it the good far outweighs the bad. do your homework, talk to people, get second and third opinions and then do what you need to to get your life back

 Reply posted for mckinndn.

Would you have a j-pouch?

 I know that it seems tough to deal with. As a nurse I'd taken care of quite a few patients who had all types of ostomies. Just the thought of having one myself devastated me, I thought it would be gross, and I thought that other people would treat me like a freak. I know that sitting in your shoes right now it is probably really hard to believe, but having an ileostomy, especially temporarily, really was not so bad. Since UC is confined to your colon, after the surgery you won't have another flare bc you won't have a colon.

My ileostomy has been closed for almost 2 weeks. I only had the right side of my colon removed, so mine's kind of different. There seems to be a lot more response on this issue on the discussion boards at www.ostomy.org if you want to go there and ask some people who have j-pouches what the process was like for them. Most people seem to be really glad that they had the procedure done.

I'm 26, and my ileostomy was my first surgery ever, so I was pretty nervous about it... but I was lucky enough to have found a really really great colorectal surgeon who I had A LOT of confidence in. I really recommend asking around and doing some research to see who the best in your area is.  Being a nurse I knew which hospitals were the best in my area... but questioned whether I was "sick enough" to need them... but in the end I found out that you don't have to be "sick enough" to recieve quality care, and if  you trust your health to the wrong people soon enough you certainly will be sick enough. The recovery wasn't too tough, and they will teach you how to take care of the ostomy in the hospital. There are wonderful resources online to help you with ostomy care if need be too.

Good luck, take care, and don't hesitate to ask me if there is anything that I can help you with. I learned A LOT while I had my ileostomy, and don't mind sharing at all.