my uniquely similar story
OK here we go:
Present - 32 year old male living w/ CD in California. Post 2 resections and hernia operation (most likely due to first resection). Married plus a 4 month old (adorable) baby boy.
History (His Story? or My Story? you decide) -
I grew up in a very troublesome home (mom had all serious bipolar, dad left, all kinds of abuses etc..) which I think, in my case, played a big part in me finally developing CD. I had stomach problems since I can remember. At the age of apprx 16, after being in and out of ER for 3 months, losing lots of weight, throwing up, pain, lots of D etc., I was finally DXed w/ lovely Crohn's. I was put on steroids, got better immidiately and then weaned of the steroids and went on to Pentasa.
The next six or seven years were pretty event-less. Just a teenager living w/ a rough digestive system. Symptoms: D on and off, gas / growling, and flare-ups that last about week and don't happen too often.
At roughly 22 years of age, I had a colonscopy for the first time in many years, which revealed lots of ulceration and a danger of obstuction. I was advised on a bowel resection and I agreed (mistake? maybe). Resection was apprx 6" and was at terminal ileum.
Post-Op, I was put on Questran to control bile D (works great!!!!) and pentasa to keep inflamation away. I was doing OK.
I gradually got sicker and sicker for the next 10 years. My new GI at Cedars Sinai thought it may be IBS or overgrowth, as ALL markers showed no inflamation. We tried many treatments for IBS / overgrowth w/ no success. I finally opted for resection at the anastymosis (although it showed no inflamation, it was quite narrow and we thought this was what was making me sick). I went ahead w/ resection (another 6" removed).
Lab results showed EXTREME inflamation at anastymosis. Post-Op I felt fair to OK. Still taking Questran for the bile D. My main issue is that most meds make me ill. I have tried Immuran and Entocort which both make me sick. Doc and I agree that I am not sick enough for the biologics (Humira, Remicade etc..) and the Pentasa / Asacol doesn't do anything for me.
My main symptoms are bloating, pain, gas (lots of it!), sore joints, muscle ache, throbbing right toe, inflamed eyelid (that's a weired one, anyone else get it??), bloating, faigue, depression, and anxiety.
My drugs of choice are Questran, Xifaxan on and off. Trying to get on LDN, with some difficulties. And I am playing around w/ the hookworm idea.
Thanks for Reading!
k
OK here we go:
Present - 32 year old male living w/ CD in California. Post 2 resections and hernia operation (most likely due to first resection). Married plus a 4 month old (adorable) baby boy.
History (His Story? or My Story? you decide) -
I grew up in a very troublesome home (mom had all serious bipolar, dad left, all kinds of abuses etc..) which I think, in my case, played a big part in me finally developing CD. I had stomach problems since I can remember. At the age of apprx 16, after being in and out of ER for 3 months, losing lots of weight, throwing up, pain, lots of D etc., I was finally DXed w/ lovely Crohn's. I was put on steroids, got better immidiately and then weaned of the steroids and went on to Pentasa.
The next six or seven years were pretty event-less. Just a teenager living w/ a rough digestive system. Symptoms: D on and off, gas / growling, and flare-ups that last about week and don't happen too often.
At roughly 22 years of age, I had a colonscopy for the first time in many years, which revealed lots of ulceration and a danger of obstuction. I was advised on a bowel resection and I agreed (mistake? maybe). Resection was apprx 6" and was at terminal ileum.
Post-Op, I was put on Questran to control bile D (works great!!!!) and pentasa to keep inflamation away. I was doing OK.
I gradually got sicker and sicker for the next 10 years. My new GI at Cedars Sinai thought it may be IBS or overgrowth, as ALL markers showed no inflamation. We tried many treatments for IBS / overgrowth w/ no success. I finally opted for resection at the anastymosis (although it showed no inflamation, it was quite narrow and we thought this was what was making me sick). I went ahead w/ resection (another 6" removed).
Lab results showed EXTREME inflamation at anastymosis. Post-Op I felt fair to OK. Still taking Questran for the bile D. My main issue is that most meds make me ill. I have tried Immuran and Entocort which both make me sick. Doc and I agree that I am not sick enough for the biologics (Humira, Remicade etc..) and the Pentasa / Asacol doesn't do anything for me.
My main symptoms are bloating, pain, gas (lots of it!), sore joints, muscle ache, throbbing right toe, inflamed eyelid (that's a weired one, anyone else get it??), bloating, faigue, depression, and anxiety.
My drugs of choice are Questran, Xifaxan on and off. Trying to get on LDN, with some difficulties. And I am playing around w/ the hookworm idea.
Thanks for Reading!
k
