My story

[DontStop44]

Hey everybody new to this forum so let me get you caught up on my story.
I was diagnosed with crohns disease 2 years ago during my freshman year of highschool. After my diagnosis we started on the first medication given to us (forgot the name) And it dident work. We repeated the cycle over and over until we got down to remicade and Humira neither of which worked. After 1 year and nothing working for me i had to have surgery for an ostomy. After surgery i felt great for about 6 months (I was not using drugs during this time because i was told drugs where not needed after surgery which is wrong in the case of crohns disease not ulcerative colitis.) In the last 6 months i have been in the hospital for over 2 weeks. I have tried a very(experimental) treatment called MAP. I am on 3 different antibiotics currently but i do not belive this is a very good treatment option. I am feeling great currently on it but am scared for the future of my gut after the antibiotis so i would like to get off of them. My questions is if i started humira before my surgery when i had my colon and it dident work do you think it will work after surgery in my small bowl? Also is there any other drug options you think could potentially work for me?

 

[Orchid]

It sounds like you're on the anti-MAP antibiotic course. The behind it is that Crohn's might be caused by Mycobacteria Avium Paratuberclosis since it causes similar diseases in other animals and if you kill it, the Crohn's might go away. If works you flat out wouldn't have Crohn's anymore, but I'd still feel safer on drugs to maintain remission (it is VERY easy to contract MAP since it survives cooking, pasteurization, and can't be easily removed from the water supply)

And no, if it doesn't work, it's not likely to start working, especially because the body may have developed antibodies since you stopped. If the antibiotics don't work and your family is really committed to cutting edge treatment there is Vedolizumab which is almost certainly not going to be covered by any insurance and maybe difficult to obtain in the USA. There's also Cimzia which would likely be easier to get, though neither of these is likely to be covered by insurance and cost incredible amounts of money out of pocket.

 

[David]

Hi there and welcome to the community. I'm so sorry to hear about everything you've been through

My suggestion would be to look into the clinical trial in my signature. Let me know if you have any questions.

All my best to you.