• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

New to this Forum, scared

Hello everyone, I am 26 years old man from Lithuania/Europe diagnosed with Crohn`s. Firstly I want to send the strength and best wishes to everybody suffering from that terrible desease. A year ago I was diagnosed with proctitis, I had an abscess in the rectum, I went for surgery, and was left with a draining setons. Unfortunately, the abscesses came back and back again with multiple fistulas in different places that caused multiple drainages and surgeries. Had terrible months of pain. During colonoscopy doctors took biopsy samples for crohns. The tests came negative, but I was still diagnosed with crohn because they could not heal abscesses, ant fistulas, and only Crohn could explain this, maybe I had a wrong diagnosis..?
So anyway I was treated first a combination of metronidazole/azathioprine/surgeries, that did not helped at all. Finally I had temporally ileostomy, fistullas drainage and Remicade treatment. After 3 months of this treatment, I came back to hospital to change the drainage setons and now my surgeon is telling me, that there is now signs of healing, abscesses and fistulas ar still in my rectum, the treatment seems to not help me, and he recommends a rectum removing operation with permanent ileostomy bag. I am really shocked, because even now a cannot believe a have such a desease like Crohn. And my stoma bag makes me very shy and depressed. Maybe if would be older, had a wife and kids and more mature, this would not make feel so uncomfortable. This will be a challenge to find a women, and get my self confidence back. Just one year before I was healthy and good fit, used to swim a lot. Now I am depressed, really don`t want my rectum to be removed and want to get rid of that stoma bag... Hope to find another treatment or advice.


Hello Anton and :welcome: I am sorry you have had such a hard time and that it has now left you feeling like this. I don't have any experience with a bag but please have a look at our stoma sub forum: http://www.crohnsforum.com/forumdisplay.php?f=46 as there will be lots of help and support available to you here from people who know will understand exactly where your coming from. Treatment wise the only thing I can think of asking about is another biologic like Humira, it is similar to remicade but uses human protein instead of mouse, people who have not done well on remi do tend to be tried on this, have a look at our treatment forum as there will be info about this there. I do hope things can improve for you soon and that you can start feeling better about things, please keep is posted on how you are doing :hug:
Hi Anton. Just also want to welcome you to the forum, I'm so glad you found us. The quick onset of this disease can be a real shock and it sounds like you've been having a lot to cope with :-( We're all hear to listen and offer any support that we can.
Hi Anton

I'm SO sorry to hear about the battle you're having with your Crohns, unfortunately it does take hold of you rather rapidly - speaking from experience. The year before I was diagnosed I was a happy, energetic 15 year old who hardly sat still.

Maybe you need to get a second opinion - from another doctor - he/she may have other different options to explore.

I really hope they sort you out as soon as possible so you can start feeling better

Gentle hugs :hug: :hug:

Shelli x