Thank you for this feature. After mono with brittle spleen, then proctitis and then U.C. And symptoms came more frequently began at age 17 and now 53. The doctors finally told me I am an indeterminate CROHN'S Colitis Patient. They say I have both. Now doctors argue with me if I really have both! Just asked my gastro for past nine years and he says large bowel CROHN'S. Haven't had constipation for 30 years and as I start to heal from major relapse I have gone from going 12-14x's a day to skipping a full day or day and a half.
Hard to breathe (get this sensation of burning or ice cube at base of throat when on pred or in big relapse) I did notice when I went into an air conditioned room today I could breathe better. I do have exercise induced asthma and these auto immune issues as well as arthritis have a connection, heart beats hard from pred. Really annoying, feels as if a foot is stuck in my rib cage, pressure, swollen. Doc asked me to get eval since I am away from home now, ER three days ago made sure I am not throwing a blood clot and did various scans. Told me a lot of symptoms are from the pred. Also on Budesonide and got my Delzicol. So slow to heal! Eat carefully, rest, taking over a month to get better.
New gastro used Prometheus testing that showed me as only a U.C. pt. that can only be used as a guideline, not a diagnosis tool! Asked me to go off Delzicol and switch to Apriso. Two weeks later after long remission where I ate what I wanted with rare negative issues, was even eating salads! cramps began. I shrugged it off and over a period of months the problem got worse. I was told to add probiotics and after a week I called and said to new doc I wouldn't take Apriso any longer nor probiotics. I wanted my old Delzicol. It got so bad with cramps, nausea, 12 trips or more a day to bathroom I had to go to see my old gastro in another part of the country.
Old doc told me if he had been switching my drug he would have chosen Lialda. It is very scary to change any meds when there is any status quo. I don't even remember now how new doc convinced me to change drug.
The list of drugs used over the years is enormous. Many tests, many colonoscopies. Lots of drugs that cause nausea, cramps, vomiting or don't work. Remicade worked at full dose allowed by FDA, but caused optic neuritis (pain in eye and for me loss of nearly all color vision in one eye for many months).
Praying my attempt to get access to Xifaxan through my old gastro and told insurance today that if they let me have the drug (it worked ten years ago) for me on the 11th night I can get off the regimen I am on to get me back into remission. Xifaxan is hard to get especially for "off label usage". Pred is an awful drug. Using Budesonide now as well. Normally pred. makes all food taste good, now things taste too salty or I have kind of lost my full sense of taste. Might carefully try the cabbage juicing with carrot!
After so many years of this and doing fasting if needed to never need surgery I am growing weary. I am losing my ability to deal with the pain. Mental health, biofeedback, supplements, meditation, acupuncture, special diets, all kinds of things tried over the past 15 years. The only change this time was the change of drug. My gastro told me it is almost the same to go from Delzicol to Apriso but that is why we have different brands he said. So now I deal with the consequences and wonder if it was a coincidence and what to do in the future?:frown::frown:
