I am a 46 year old male and have been reviewing this forum. Lots of good information here. I would like to take the opportunity to tell my situation in the hopes that someone has experienced something similar and may be able to share with me. I welcome any and all input. My current GI doctor says I'm the most difficult patient he has ever had and I'm now seeing multiple specialists at Mayo in AZ. My case is so unusual that Mayo is even doing a journal write-up on it. Ultimately I know the decision is mine, but I'm looking for input from friends, family, doctors (or course) and other patients.
I have had Crohns for 17 years now. Since 2001, I have had three resection surgerys. Early on, I was on prednisone for more than 6 years before they could ween me off it. Was on Azulfidine as the maintenance drug, but have been on Asacol now for several years (with a short run on Pentasa over the summer). I tried Remicade, but developed serum sickness. In 2007, I tried Humira when the Remicade did not work. After four injections, I developed a colon abcess. After three weeks in the hospital, I had my third resection. While there, they determined the removed section of colon had active cocci (Valley Fever for those of you familiar with Arizona). Not unheard of, but very unusual to see cocci in the colon. Turns out that a risk of Humira is cocci. Although not proven, some of my doctors suspect that the Humira triggered the colon abcess.
All that said, I've not been doing too good and have lost some weight. After more tests in the past two months (MRI, CT, & two scopes), the lower part of my colon is in very bad shape. The sigmoid, rectum and anus are all badly diseased. My primary GI doctor says the colon needs to come out and sent me to Mayo. He is also concerned about even trying another TNF blocker. I've seen the Mayo GI doctor and had a surgical consult. The surgeon is of the opinion that I need to be very careful in my thinking. While I am still fairly healthy, surgery may be the best option. He said that if not careful, the cocci could end up killing a person and better to do the surgery while still relatively healthy. He said he has a patient now with Crohns and cocci who exhausted all Crohn's medications available before having the surgery. He had the surgery and now remains in intensive care because of the cocci and the fact that he waited so long. In my case, an Ileostomy is the only surgical option.
The GI doctor did present several options:
1) Surgery is of course an option
2) Increase my current dosage 6MP
3) Try Humira again
4) Try Cimzia
6) Participate in a trial starting in a few weeks for Ustekinumab (IL12)
So now I'm researching the options presented by the GI doctor above. Also trying to get information on the surgical option for the Ileostomy. Obviously reluctant on the surgery given the change, but the feedback I've received to date is that it really improves the quality of life. I would love to hear from anyone that has had the surgery and their experience. Would also love to hear feedback from anyone that has used the medications above, especially 4-6. Not likely I'll find anyone out there that has had experience with Crohn's and cocci, but it would be great to hear about your experience if you have.
Given the GI options above, I'm reluctant to start another TNF blocker since the Remicade and Humira did not work in the past. I've pretty much ruled out Tysabri given the controversial side effects, but welcome feedback on this based on others experience (good or bad). IL12 is still in trials, but maybe someone out there has participated in some trials and has something to offer.
Thanks for your time and I appreciate you reading through my long-winded story. Trust me when I say that you have received the very short version.
Look forward to hearing from anyone concerning their experiences that may aidme in my decision.