New to Forum--Hello!

I am in the first week of my tenth flare and just discovered this forum. I have always felt very lonely and desperate with this disease, as if no one around me really understands what I'm going through. The agony, the depression, those close-calls with death...

My first flare put me in the hospital. I was in college at the time. I was 2 weeks in, 20 lbs lighter, and severely dehydrated when I finally got referred to a proper Gastroenterologist and diagnosed. The routine treatment since then has been Prednisone for flares and Asacol for maintenance. Luckily I am not allergic to the 5ASAs, but I am skeptical as to how well they really work. When I'm on Asacol, I tend to get a flare once or twice a year, and twice I've tried going off it, and both times was fine for 6 months.

The typical routine when I get a flare is to call up the nurse and order a course of Pred. He starts me out on 60mg and tapers down for 6 weeks. That usually knocks it out within a day or two. Pred is wild and wacky stuff. Most times it acts on me like speed--I wrote my entire dissertation on a single course of the stuff. I often go on a cleaning spree. Sometimes it makes me psychotic and paranoid. I have learned to be careful to keep my mouth shut when I'm so medicated. As fun as this can be, I know it's supposed to be bad for me long-term (deteriorates bones and joints?), so I have been looking for alternatives.

I am not ready to try immuno-suppressants (they're worse, right?). My last flare (Nov-Dec 08) was not a bad one, and almost by accident I discovered that probiotics seemed to lessen the severity of my symptoms. Instead of starting the Pred course, I started taking 6 times the amount of probiotic recommended on the bottle, and within a couple of weeks, I was back in remission. Maybe it was just a fluke; I don't know. I'm currently having another flare, about a week in, taking the priobiotics and it's not getting worse, but it's not getting better either. I'm about to give in and call the doc.

There appear to be some great ideas on here I haven't tried, diet-wise. I'm really excited to have a new place I can come. Please drop me a reply and say hi. Is my treatment typical? Am I a typical case? Is it normal to have suicidal thoughts?

Hi and welcome. No, pred should not cause suicide thoughts <-are these thoughts while on Pred?. In fact, that is a side effect that they warn you about and you NEED to mention this to your GI. There are a few individuals that can have manic episodes while being on Pred and that is not normal. Please let your doctors know about this.

Welcome to the forum

Hi, my docs sounds at least "or less ' felpful than yours. And there still unable to find out what and why I having trouble all over. It realy, realy sucks when they wont even properly answer a question. Mine are cold arogant, and too busey. My GI is swamped. I have yet to start trying steroids. I was offered a little methetrextate, for my multiple unkown immuno problems. Mainly the Iritis, immune eye attacks. Brutaly painfull, but as my probs have showed up. Id rather deal any of it than the IBS/ UC type thing going on.

I chickened out because of fear about liver damage, cancer and so on. I wasnt offered steroids I thing because I was complaning.  After two bad wweks, I think I may change my mind. And especialy after seeing the word surgery quite a few times around here. Though Im no where near as in the bad shape some of these people are, yet. Its bad enough to scare me, and I dont do that easily.

Post Edited (houseguest) : 5/30/2009 10:27:55 AM (GMT-6)

Hi and welcome! As others have said, it's NOT normal to have suidical thoughts when you're on pred and I'd definitely take the time now to find a new doc since you're in remission. The two best things I like about my doc are that he spends a LOT of time with me at each appointment, answering the questions my DH and I have and that he's great about returning phone calls.

A quick google search shows that prednisone-induced suicidal ideation seems to be common, so I don't think you're alone in that. It also definitely causes depression, the development of which can and does include suicidal thoughts.

Good luck riding it out, and definitely seek help if you need it.

I completely understand, don’t worry your not alone, ive never been on pred for UC (nock on wood) and still feel like life is really not wroth going through. I feel like that tonight, but we have to battle through these feelings and keep up our sprits.

Ive been trying all sorts of diet things since my first really bad flare 3 months ago. I think that the only real thing that can heal you is a raw food diet. I ve only heard of one success story so far and it is by Paul Nison, you can watch him on you tube.

Im not completely raw now because my weight on the diet was going below 100lb. Im 5 foot 1 but its still to low.

Any bad feelings just post them. It helps to get rid of them

My gastro doc told me to use the hydrocortisone enemas while tapering and it would help with the UC and the tapering withdrawal symptoms.  However, I still can't administer the enemas - only maybe 1/3 will stay in and because of my obesity I can't reach good enough to do better.  Also, so much gas - hard to keep in.  I may try again as I do believe it would help me a lot.  I just hate them - they also cause me soreness and swelling where I don't want or need it.  My NP recommended a cream called Calmoseptine (sp?) which I got today - maybe that will the outside side effects.

ElaineNY

Thanks Dr A-

I have never warmed it but it is not cold.  I may just try again - I use another water soluable ointment - AYR - about same thing as A & D.  Never seemed to have a problem with getting it in if I could only REACH that area with arthritis pain, etc.  Another reason to lose weight!!  Do you think that if I tried it again it would get better - feel better - after several.  I have always had more symptoms the more I use - any kind of rectal meds as in more pain, more cramping, more blood and more mucous. (and that gets better when I stop the enemas, suppositories, foam, etc.)  The longest I have tried was 10 days one time and the last few were horrible.

ElaineNY

Thanks! I never thought about saving any - I throw it down the drain. My medications cost me nothing. Anyway, I NEVER felt immediately better from any and I can't use mesalamines of any kind. I, however, have retained the protofoam overnight many times after considerable pain and cramping for about an hour - lots of effort. AND in the mornign I feel worse and have more problems. I just know that rectal meds is what would get me to remission. Oh well, seeing that specialist in a couple weeks and that question is high on my list - rectal meds.
ElaineNY