I just want to say that, like everyone else I hate prednisone. I was just hospitalized with severe pouchitis that may be crohn's so I have been on prednisone. I swore I wouldn't take it again and to be honest i would rather be sick than on steroids. Anyone feel this way? I am tapering them as fast as possible and starting to get symptoms again...but, I just hate how it affects me psychologically...irritable, and it does anyone else agree that it really does something to you to look in the mirror and not even recognize the reflection. Ugh...sorry to complain so much. Just needed to throw this out there and see if I was the only one who ever thought like this......

Hi Valerie. I hate pred too. HATE IT!!! It made me swell like a pumpkin, gave me painful joints and made me feel even worse than I did with just the UC flaring all the time. I've only ever willingly taken it once, and that was the final attempt, last year right before surgery. It worked on the top dose and then as I tapered off, I got more and more ill. UGH. I'm so sorry you're still having problems and getting stuck with pred even after the pouch. Get well soon!!

hi valerie.. i completely agree with you, you are most definitely not alone. i absolutely hate prednisone. YES it affects how you look, sleep, eat, feel and it gave me osteoperosis. on a happy note though, i am now weaning myself off it after being on it for 10 years on and off (mostly on). i am down to 10mg and hoping i can taper off safely without any side effects over the next couple of months. good luck getting off it too! take care.d

Hear hear on hating pred! I am in about my hundredth or so UC flare as I speak, or rather a reflare as I tried to get below 17.5 mg, and it sucks because it never seems that bumping up slightly again to where the reflare started does the trick. I'm so sorry you have to get back on this yucky poison. In high doses it has priovided me relief but it seems ever weaker and weaker, while the awful and yucky side effects always stay the same. Here's hoping you can get off soon.

Christopher

thanks for your empathy guys....it is so hard. I get so sick of everyone always saying..."well, if you took more of your steroids you would feel better" or "just up your steroid dose, stop tapering so fast". HELLO! The psychological side effects of higher doses aren't even WORTH it in my opinon! I am on 20 right now...definitely felt better on 40, but my face is like a giant melon! I was never ever a vain person until I started on the prednisone rollercoaster. When I had the surgery I was so happy to be done with them for good, but here I am.......
I am sorry to sound so negative, sometimes the whole "chronic illness" thing takes its toll on the best of us.....Thanks for your suppport everyone, it means so much to me.

Hey Valerie, Predisone makes me PSYCHO! I ask my wife to forgive me ahead of time, for they way I'm going to act before going back on it. I also have long term side effects. Avascular Necrosis of the hips. Now I need hip replacements. I swore I would never go back on them but last September, I got a wicked case of poison ivy. I had it everywhere. Yes everywhere! I tried everything natural which didn't work. Started 60mg a day with shots of Kenalog and solucortif so back off to the races again like Psycho Jack from "The Shining". The only good thing was it knocked down the inflamation in my intestines and I felt pretty good for 3-4 months. Jack

Valerie,

I too have chronis pouchitis. I had scope a few weeks ago, and the pouch looked horible. Although I didn't have to be hospitalized. The pouch looked far worse than I actually felt. Soemtimes you get used to feeling bad....you don't know any better. Anyway......My GI wanted to start me in 6MP. But I couldn't because years earlier 6MP gave me an inflammed pancreas. So she started me on Remicade. I asked about Prednisone (and like you, I was thrileld about taking prednisone) and my Gi said that prednisone would work, but it wasn't for long term. Remicade would be a better long term answer for chronic pouchitis.

I am new to this forum, although I have lived with a J Pouch since 1992 (almost 15 years). I have struggled with chronic pouchitis for 12 years or so. Various treatments have been tried including prednisone, but the most effective seems to be an antibiotic ****tail of cipro and flagyl daily. Even this does not eliminate the pouchitis but it does hold it in check. Occasionally I need to be rotated off onto another antibiotic. The severity of the pouchitis seems to vary, but usually it is tolerable with the antibiotics.

Thank you so much for your input everyone! It is so nice to be able to get advice. I am happy to say I am down to only ten milligrams prednisone. I am on Cipro also, twice a day and it has really helped!! I am not a big fan of daily antibiotics, or even antibiotics at all, but I do feel so much better. I would like to find a good probiotic dosage because those are so much better for you. Oh, to someday be steroid free forever.........!

Valerie, I am also on Cipro, Remicade and 6MP with good success so far. It is for treating a fistula but I was also getting chronic pouchitis like symptoms and I didn't even realize it. The weird thing is when they scoped my pouch there was no inflamation but I had all the pouchitis like symptoms. Then the R/V fistula appeared. They think its Chrohns so after 2 failed repair surgeries we tried the Remicade/6MP and I have to say so far so good. I was only on Predisone during my flare and emergency surgery for 4 months (nothing compared to most folks here) and I swear it was the worst time of my life. I was a psycho and had so many issues along with dealing with an ileostomy -- it was terrible. It may be worth asking about Remicade/6MP. I know some people can't tolerate it but I sure hope you get some relief. And don't worry about sending negative, who wouldn't be feeling a little down on Predisone AFTER having the surgery. I hope you can get off that stuff soon.

Kim

Dear Valerie,

One of our fellow posters once described it as Dreadnisone!

Yep, nasty stuff.

I'm still being weaned off it.

Good luck and hang in there.

I totally understand how you feeel. I was put back on 40mg of Prednisoine in Febraury when i had a really bad pouchitis flare up and had to be admitted ot the hospital. I'm still on it to this day and i'm only down to 30 mg since i just got out of the hospital for a bad flare up. The prednisoine for me really only worked for four days and then i started crashing again. It's hard because i get so irritable and it becomes difficult for me at school. School has become a huge challenge for me because i can't concentrate, my heart races, and i get very jittery and sweaty. I just want to run around the classroom or all of the sudden start crying. The antiobiotics seem to be the only thing that keeps it somewhat settled.

Hey Val,
I was misdiagnosed with Chrones Disease for 2 years and was taking 60 mg of pred a day. I gained 30 pounds over this time, developed insomia,and became utterly lazy! I was finally hospitalized for a month and another GI was called in to take a look and it turned out I actually had severe UC, which surgery could take care of. I am still battling insomia and addiction to ambien, and this has been over 5 years - steroids are the devil!

I only had Prednisone once.....full blown hospitalized psychosis. No one has ever suggested it again.
LoriP