Hello to all sufferers of all diseases related to Crohns or not. I've had Crohn's disease and Ankylosing Spondylitis for over 40 years or since I was 13 years old. A the time this was in the 60s and they really had no diagnosis for this disease or rather it really didn't have a name yet. I remember that my doctor was so excited that he diagnosed this. It was like he won a lottery but unfortunately I won the pain in the behind lottery. I went through at least 10 fistulectomies which at the time involved hospital stays of sometimes 2 months. Every day I would have the perianal fistulas packed and basically wallowed in self pity the rest of the time. For a teenager this was not a socially talked about thing but thank God I had a sense of humor about it. I was married and with kids by 27 and working as a dentist since 23 all the while spending most of my time in the bathroom or on the floor writhing in pain I between patients. I through myself into my work and that's how I hid the depression and dealt with the pain. Finally the diarrhea was out of control with 20-30 movements a day and I ended up at 128 pounds in emergency with an undiagnosed abscess from a fistula in my pelvis. The pain made me pass out at work so I went to the gastroenterologist as a walk in and he took one look at me and sent me straight to the hospital where that night they performed a colostomy surgery and found the abscess and drained it. In hindsight they said one more day it would have eroded my femoral artery and I would have died. This is just a brief history. There really is too much to tell and it would take too long. Fast forward to today I have had 5 major surgeries redoing the colostomy from one side to the other and then finally a permanent colectomy and a permanent ileostomy and the removal of the anus and rectum. See it does get worse sometimes but now I'm better. It's been 15 years with no meds now and otherwise pretty healthy other than the spondylitis which has a life of its own. A year ago I was having some trouble around my ileostomy with a wound which I was told was a pressure ulcer. Well no amount of steroid therapy or wound therapy by specialists helped at all and the lesion got bigger and bigger until it became unmanageable. The pain was unbelievable until the ulcer got so big I could almost put my fist into it. This is right around my stoma so managing the adhesion and odors with an Ostomy in such close proximity of dealing with patients was a nightmare but I handled it very well. Finally with the help of the Internet and knowing allot about medicine I diagnosed myself with pyoderma gangrenosum and after I told the specialist what I thought he confirmed it and here I am. Now they put me on sulphasalazine and remicade and I have had my second infusion so far. Nothing has happened yet but I'm hoping someone out there has a good story for me. My life been a nightmare but no one that knows me has the slightest clue what I go through. I hide it very well from my family and my friends. My current wife understands me and treats me like gold and with her help and understanding I somehow get the energy to fight this thing. My goal in sharing this is to show others that no matter how bad it gets you can get through it somehow and not to give up. I've been in treatment for depression regarding the chronic pain and body image but still I am a pretty happy guy. I'm happy to be alive and I just love life. It stops me from nothing. Maybe nude sunbathing but other than that I'm ok. The worry on my mind is the side effects of Remicade. I have lost 6 friends in 5 years from lymphoma and one of the side effects is possibly that and that scares me. I just want to hear some good stories that's all. Maybe a pat on the head that it will be ok. Any advice would be grand. Thanks for reading this.
Good luck to you all.
Good luck to you all.
