Decisions

[steph38]

I have been diagnosed with Crohn's for 16 years, I have it all over. I have tried or been on every medication out there. I am out the point now where I have developed a fishtula. They tried to go in and do an ablashion, however that did not work. I was then told that my only other option is now a temporary colostomy. I went online and freaked when I saw the pic's and stories. Has anyone had a sucsess story that they can share cause right now I am leaning toward not having it but am in alot of pain. What to do?

 

[Lisa]

Hi Steph - sorry to hear you are dealing with a fistula now! Is it internal or external?

You say you have been on every medication - does that include Remicade? I guess I was 'lucky' that Remicade was able to take care of mine- but it took over 2 years to get approval to start it aas I 'wasn't sick enough' at first!

 

[xJillx]

Hi Steph and welcome! I think anyone with Crohn's fears the idea of needing a colostomy one day. It was one of the first things I obsessed over when I was diagnosed. However, after being on the forum, I have discoved that it is truly a blessing for so many. Check out the Stoma sub-forum to read about how it has helped so many, such as the thread below:

http://www.crohnsforum.com/showthread.php?t=18561

Also, many have had temporary ones, which afterward, gave them years of remission. So, being that medication hasn't helped and you are in a lot of pain, I would certainly give it a try. I wish you luck with your decision, and I hope you find relief soon.

 

[steph38]

My fistula is internal and goes through the rectal muscle..uugggh. I have been on Remicade(loved it but after 2 yrs had two life threatening reactions, been on Humira, and am currently on Cimzia. And of course been on Prednisone for 16 years... I would love to get off of it. I saw some pics yesterday of a colostomy and they freaked me out, that is when I stareted thinking twice. The surgeon said it would be a temporary thing lasting only 3-4 months.

Thanks for all the best wishes, and I wish you all the same.

 

[jordan29]

Hi steph my sister had a temporary colostomy when she was 25 she had uc she got it reversed 6 month after and she said it was the best thing she has ever done she is now 45 when she first had it done she wouldn't look at it change it I helped her for the first month but now when she looks back and we talk about it she said she did make the right decision what ever way you go I wish you well

 

[steph38]

Thank you so much for sharing that I think I am leaning more towards it becuase the pain is just getting worse.

 

[Awbrey]

Hi,
Sorry you feel so awful :-( My mother in law just had one 2 months ago. It saved her life and she wished she would have done it years ago. She said as soon as she got out of surgery she felt 100 times better, even though she had major surgery she felt better. Hang in there