Hi, I'm new here, so I will take a few minutes of your time to tell my story. I first started having intermittent problems with abdominal pain, etc, in my junior year of high school. Fast forward 3 years later to 2001 and I was finally diagnosed with Crohn's disease. I've had lots of problems off and on, mainly due to periods of time where I didn't have insurance coverage and couldn't take medication. However, pregnancy puts me into remission so after each of my two sons were born I had a year or two with no problems.
The only medication I've ever used was Pentasa, but it never worked that well for me. I didn't feel much better when I was on it then when I was off of it, so when I didn't have insurance and couldn't afford it, I wasn't too concerned because I wasn't that worse off.
This past April I ended up in the hospital for 4 days with a small bowel obstruction. I had the worst pain I have ever had in my life (worse than labor) for several hours and decided to go in. After that they put me on prednisone and Pentasa for 2 months, which worked great, but it must have been the prednisone because once I tapered off I was having problems again.
I now have a new GI, and I will be starting Remicade this week, which I am very excited about. Hopefully it works well for me. There are a lot of small issues in the middle I skipped, but I'm trying to make this brief and get to the point. :ysmile:
So my main question is that I also have hidradenitis suppurativa. I've had it nearly as long as I've had Crohn's disease (over 10 years) but I just found out what it was about a year ago. Basically, its a skin disorder. I get painful boils that leak pus. In the beginning, I would get them off and on. For the last 3 years I have had them constantly. I have them in both armpits, under my breasts, in my groin and the surrounding areas (top insides of thighs and lower stomach.) Now I have them constantly (right now I probably have about 30 boils or more, with 3 or 4 leaking pus) and they often abscess and get infected with staph.
After learning about hidradenitis suppurativa I found that a very high percentage of people who have it also have Crohn's disease, and that it is VERY difficult to treat, much more difficult than Crohn's. I have an appointment to see a dermatologist in February at the University of Illinois in Chicago (I can't see any local dermatologist's because I have medicaid and none of them accept it.) Do any of you have this skin condition? If so, have you found any effective methods of treatment? I have tried several antibiotics, I'm hoping the Remicade I will be starting this week will help, but from what I've studied it seems like radiation would be the best treatment option for me, so I'm hoping that's what I can get, but I wanted to hear from others!!
Thanks for reading my long story and any replies are appreciated!!
The only medication I've ever used was Pentasa, but it never worked that well for me. I didn't feel much better when I was on it then when I was off of it, so when I didn't have insurance and couldn't afford it, I wasn't too concerned because I wasn't that worse off.
This past April I ended up in the hospital for 4 days with a small bowel obstruction. I had the worst pain I have ever had in my life (worse than labor) for several hours and decided to go in. After that they put me on prednisone and Pentasa for 2 months, which worked great, but it must have been the prednisone because once I tapered off I was having problems again.
I now have a new GI, and I will be starting Remicade this week, which I am very excited about. Hopefully it works well for me. There are a lot of small issues in the middle I skipped, but I'm trying to make this brief and get to the point. :ysmile:
So my main question is that I also have hidradenitis suppurativa. I've had it nearly as long as I've had Crohn's disease (over 10 years) but I just found out what it was about a year ago. Basically, its a skin disorder. I get painful boils that leak pus. In the beginning, I would get them off and on. For the last 3 years I have had them constantly. I have them in both armpits, under my breasts, in my groin and the surrounding areas (top insides of thighs and lower stomach.) Now I have them constantly (right now I probably have about 30 boils or more, with 3 or 4 leaking pus) and they often abscess and get infected with staph.
After learning about hidradenitis suppurativa I found that a very high percentage of people who have it also have Crohn's disease, and that it is VERY difficult to treat, much more difficult than Crohn's. I have an appointment to see a dermatologist in February at the University of Illinois in Chicago (I can't see any local dermatologist's because I have medicaid and none of them accept it.) Do any of you have this skin condition? If so, have you found any effective methods of treatment? I have tried several antibiotics, I'm hoping the Remicade I will be starting this week will help, but from what I've studied it seems like radiation would be the best treatment option for me, so I'm hoping that's what I can get, but I wanted to hear from others!!
Thanks for reading my long story and any replies are appreciated!!