bobmcfc said:
I have this and you wouldn't want it. It's painful, debilitating and worse. Blood tests every fortnight, enough pills to fill you up before breakfast and always the prospect that they don't work or stop working. I had 3 months of good health when I was first diagnosed and put on asacol and pred foam then it stopped working and I went downhill fast, pain, and nothing but passing pure blood upto 20 times a day.tired doesn't even come close and I thought I would be hospitalised in sep, I had to go on antibiotics just to get me to my next consultant appointment. Then I was put on 40mg of oral prednisolone which I took for 5 weeks with only slight improvement and I was still as tired as every and passing blood everyday. Doctor told me that I would need boilogical IV treatment remicade/infliximab as the next step because he believed me to be steroid refractory and decided to wean me off the prednisolone and start me on the immune suppressant imuran (which is used for transplant patients also) while I'm waiting for remicade. As luck would have it the immuran seemed to work like magic within two weeks I feel very close to normal again ( this week i feel normal, bellyache but I can deal with a little of that) I'm still on the steroids but can't come off them immediately because of withdrawal but fingers crossed I hope this works as long as possible before I go to the next step. After IV Treatment, surgery is the final option I'm told.
I'm on 13 tablets a day now to control it and have been diagnosed 8 months, the amount of medication is a worry too because of liver damage and stuff. ( been suffering at various degrees building about 4 years)
Anyway it's not nice, I don't know everything about my illness, sometimes I don't want to know everything as it takes over my life as it is. Autoimmune disease suck !lol
Hi Bob,
I have the same illness as this and your story sounds like a mirror image of mine, until the steroids kicked in.
Luckily the prednisolone worked, although as you say, you need to be weened off these gradually. It's twelve years since I was first diagnosed and I have had two separate bouts of it. Will still have to take the asacol for the rest of my life, and have the annual colonoscopy to look forward to.Like you say, the worst part is the fatigue and passing pure blood at any given time. Get well soon mate, and best wishes to Darren, whoever his allegiance is to.