I have been disease free since my perm ileostomy in 1984! My CD was in my rectum, colon and small intestine.
If you don't mind my asking, you mentioned adrenal issues due to long term pred. use. Will you please explain a bit.... symptoms, treatment, etc.
Thanks in advance.
Hi Peggy - I had been on prednisone since 1980 - usually 5-10 mg. per day to maintain remission from Crohn's and at times more during a flare but I was always able to come back down to a maintenance dose until 2001...from then until my surgery in 2005 I was taking 20 mg./day just to maintain but by that time more of my day to day problems were from the fistulas and constant draining. When I did have the 2005 surgery, I was taken off all meds. It was a "wait and see" case. I had problems feeling greatly fatigued and dizzy to the point of fainting..generally feeling crappy, weak and shaky. Gastro sent me to endocrinologist who dx me w/adrenal fatigue. They said my adrenal gland was not "waking up". During this time I also had a very hard time maintaining hydration even though I was drinking gatorade by the gallon. My surgeon was concerned it was because he had to remove more of the ileum that originally thought..to preserve as much as he could he positioned my stoma on my left side. He told me after surgery I may need to "hook up" at night if I couldnt stay hydrated on my own. So some of my symptoms pointed to not being hydrated AND some indicated the adrenal problem. Endo dr. put me on 15 mg. pred./day and very slowly brought me down. I still have to take 5 mg./day but that only brings me to a "normal" level....a cortisone test shows my adrenal is able to produce about 2-3 mg./day so supplemented w/the oral 5mg. puts me in a normal range of about 8mg./day. I also resumed taking Imuran a few months after surgery - per my gastro dr. So I take 100 mg. of that daily (down from 150 mg./day pre-surgery). I am still dealing with fatigue and shakiness at times...I think my level of hydration fluctuates greatly. On the other hand, I have never had a problem w/my stoma or my appliance (I use a 2-piece from hollister), also I can eat most anything, I just make sure not alot of fiber at one time. I am glad I had the surgery and I'm sure the drs. will get me back in alignment - like fine tuning a motor, lol!! Thanks for the interest,