Yes, we are a rare breed! There are two others who post here that only have peri-rectal CD. Fistulizing Crohn's, whether the fistulae form in the abdomin or in the rectum, is considered a serious form of the disease.
6MP (mercaptapurine) is an old drug that first was used for organ transplants and cancer. Its related to Imuran. It suppresses your immune system. The theory is that CD is an overactive immune system. Our immune system thinks it sees an enemy and attacks -- but it really is just attacking the body and in our case it attacks the rectum. Immunosuppressant drugs blind the immune system so it doesn't see fantom bad guys in your body. Drugs like Remicade and Humira are called "biologics". They block a cetain substance called a-TNF. The Moderators of this Forum have put together a descript
ion of the various drugs used in CD. Check it out under the "Crohn's Disease Resources" found at the top of the list of topics (its like another topic post). Also, check out the "Crohn's and Colitis Foundation of America" http://www.ccfa.org/ They have good information about
drugs. Remicade here would have cost me $7,000 every 8 weeks if insurance wouldn't pay. My insurance did cover all but $400.
Is your son very fatigued? I was very tired all the time. The flagyl contributed to this, but also CD is an inflammatory disease and any inflammation in the body causes fatigue. I slowly got more energy as the drugs began to work. But I really got relief when I started on vitamin D therapy. My doctor did blood tests and found my vitamin D levels were quite low and B-12 was somewhat low. CD people have problems absorbing D and B-12. I strongly suggest getting his blood checked.
Otherwise, he just needs time to heal. It sound like you have the best medical care you can get where you are. This disease is frustrating for patients and doctors! Even good doctors! I suggest you search old posts for other discussions on fistulas and abcesses. Use the "Search site" bar in the middle/top of the main page.
God bless you and your son!
Diagnosed with rectal Crohn's in early 2007. Several peri-rectal abscesses and two fistulae with setons. Allergic to Remicade and Humira. Currently on 6MP, and vitamins D and B-12.