Well I have read through all of these 4 pages of posts and gained so much more insight to what is going on than I knew. I want to thank everyone who has contributed to this, you don't know how much you help others.
I'm new to this site although I was diagnosed with Chronic Ulcerative Colitis just over 3 years ago. I had driven it into remission for over a year, with diet, stress reduction, exercise and plenty of fluids. But the beginning of this year my vehicle was stolen never to be found with basic insureance (total loss) which also forced me to drop from commercial pilot school and quit my job at the same time due to distance. My life took a huge land slide and so did my health shortly after, the Colitis returned but now this time around I've been diagnosed with Chronic Ulcerative Colitis, Chronic Ulcerative Proctitis and something the doctor called Rectal Spasms which are hugely painfull. I call that one dry heaves at the other end. It's been over 6 months and I'm only now starting to see some improvement. In the past 3 months I have been hospitalized twice, the second for 3 weeks which I was fully dehydrated, anemic from blood loss and these flare ups. My bowel was from one exteme to the other, no in between.
I'm getting many of the same side effects from the Pred. Only thing is, yes my face filled out, but I welcomed that. I really didn't know that it was from the Pred. I am also hiv poz and if you know anyone with that condition, one thing they get is hollow cheeks. So when my face filled out, my friend saw a pic of me on my cell phone and said, you look 10 years younger. So when I wean off, I will be kinda disappointed there.
But the mood swings, wow! By day I'm Dr Jeckle and by night Mr Hyde. During the day I'm crabby and unbearable, by night I want to cry at everything, conversations, tv, you name it.
My sleep pattern, I normally require 8 hours of sleep or I'm no good, but while on Pred, I'm getting 3 to 4 hours. I thought it was because of my bowel aggrivating me, but I now know that this Pred has some to do with it as well.
I've had some knee pain, not much. But then I also have arthritis related to the HIV called Reiters Syndrome which is how I was diagnosed with the HIV. So not sure on that one.
As for diet, I am not gaining weight. In fact I am still losing weight by huge amounts, for me that is. I weighed around 130 before all this and I'm 5'4". I weighed in at 108 when I was put into the hospital the second time about 2 months ago, now today I weigh less than 100. I have never been heavier than 130 in my 48 years.
Currently my med regimend is: Asacol 1600mg 3x daily, Proctofoam 3 to 4 times a day (which also has a steroid topical in it), Prednisone 40mg daily (I usually take it in the am with my other meds at 7am). I am also taking Dilaudid 4mg in the morning (that is down from every 4 to 6 hours I was doing after I got out of the hospital) and now I also take Tramadal during the day a couple of times. Oh and I'm supposed to take Canasa suppository at night before bed. Well, that has yet to happen, I'm so tightened up, I can't get the thing in.
My day seems to have a pattern though. When I wake up, I take my morning meds, eat a bowl of Raisin Bran Cereal. By between 10 and 12 I'm in the bathroom successfully. But by around 5 to 6pm I'm feeling blocked up and bloated. I wonder if the Prednisone is not lasting long enough for me. I was told that the amount of Asacol I am taking is extreme. From about 2pm through the night, I may be in the bathroom 15 - 20 times and do nothing but blood and mucus, oh and a whole lotta pain. So to get that Canasa suppository in me even with lube, does not happen.
So I'm guessing that my Ulcerative Colitis is still inflamed. Interesting my doctors are not looking at blood tests for inflammation levels. I'm wondering why not. When I was in the hospital they did CT with and without contrast of my abdomin and my pelvic. Oh and they also did a scope, not the colonoscopy but the one that does not go so far.
So my symptons seem pretty similar to everyone else on here but everyone has a different experience. I just wish this thing would go back into the closset, the colitis that is. I can deal with some of these side effects.
