I am new to this forum and believe that I have a unique case. After reading some of the other stories on here it sounds as though my crohn's could be a lot worse. I am a 26 yr. old male and have had IBS symptoms since I was 15. Both my brother and my sister were diagnosed with crohn's around this same time so I didn't admit to much of the pain or other symptoms at the time. At the age of 22 I was diagnosed with Hodgkin's Lymphoma and underwent ABVD chemotherapy and 6 weeks of radiation therapy which followed. This seemed to slow down the IBS symptoms because of the immunosuppresion from the chemo. drugs. I have been in remission since Mar. 2004 and will be considered cured if there are no signs of recurrence in Mar. 2009. A year and a half ago I was diagnosed with crohn's after seeing my G.I. doc because the abdominal pain was so bad and I was vommitting everything I ate everyday. Not to mention weight loss. I went on prednizone(4 weeks) and pentasa(4k mg/day) and prilosec as the endoscopy showed signs of gastritis. The colonoscopy showed sores and I have had an ano-rectal fistula for over 3 years. The prometheus crohn's test also came back positive.
I had a flare up 6 mos. after dx and was treated with prednizone again. Nine months after dx a lump on my back was removed that was a fibrosarcoma(soft tissue cancerous tumor). Three surgeries and a scar 6 inches long and they finally got a big enough margin. Three mos. later-another flare up and was treated with entocort(4 wks.) to get it under control. And now, 6 mos. later I am in another flare up that has caused me to call the paramedics and go to the hospital twice because of vommitting and pain. My G.I. doc started me on 40 mg prednizone again..... and the question arises.
We have avoided Remicade (although my brother has responded very well to it) because it has a chance of causing Non-Hodgkin's lymphoma in some patients. I obviously have an immune system problem as I have developed 2 malignancies already. But the G.I. doc and the oncologist feel that the risk of developing another cancer is worth taking if I can't come out of this flare up and maintain on Pentasa alone.
All of this while getting married and starting a construction business at the age of 21 and having 2 wonderful sons, one in 2003 and the other in 2005. A lot has happened these past few years.
Has anyone ever seen a similar scenario??? With previous cancer and remicade.
Also, does anyone know much about the book "Listen to your gut" by J. Thompson. It sounds interesting and I am willing to try anything to stay off of prednizone and remicade.
Thank you for your time.