First Post,First forum, Prednisone made me do it

what kind of ulcerative colitis do you have? I have left sided. I HATED prednisone and swore I'd never go on it again (even though I doubt that's a reality). I told that to my dr and she put me on rectal steroid enemas.... and they seem to be helping me pretty well.. even though mornings are still pretty iffy. There are all sorts of options, but you can be sure that prednisone will be the fastest solution, just not the most desired because of the side effects in my opinion.

anyways... sorry you have to deal with this. I know how ya feel about you can't act normal and pretend ya don't have the disease. It's a hard knock life for us LOL.

I have been taking oral pred on and off now for 7 years (have pretty much had a flare each year) which needed pred to get under control.  They have helped in the past when nothing else would.  Now having to take azathioprine which scares me even more and still not off pred. Think I am getting steroid dependant. Yes the side effects from pred are horrible but they go when you are off the drug although unfortunately I now have osteopenia from steroid use which is quite sad. Not that it causes me any bother at the moment but I worry about what the future holds. 

I think that short courses of steroids are ok but its when like me you need longer courses and you don't have much time in between courses that they can cause a problem.

Thanks for the posts everyone, Based on what you've said so far , I'm realizing the same thing that i keep coming to with the disease, It's all on me. I have to decide everything on my own cause i am my best doctor at this point.

A couple points. I HAVE NOT been in remmission for 16 months, LORD I wish! The last 16 months feel like somewehre in between remmisiion and a flare. Meaning, lots of symptoms, like fatigues (my worst enemy),
loss of appetite, (i've lost 25-30 lbs.) deppression, lots of bm everday etc. The odd thing is, other than my first flare that caused me to get diagnosed, I never had blood or excessive mucus until 2 weeks ago. This was one of my next topics, I've read this on other posts but never really got an answer. What do you consider a flare? what do you consider remmision? Maybe i should post another topic on this.

Judilyn, I think you are probably right about my lifestyle changes not being enough right now. I just hate to open the Prednisone "can of worms". My flares especially and most of the last 16 months I get severe constipation, not diahrea like everyone else seems to have. Is that odd? after 6 weeks of my first flare I got a colonoscopy and the diagnosis, I never had to get on prednisone then. He sent me home with 2.4g a day of asacol and rewasa( i forget the dose). And I felt better almost right away. I even wonder if the col. prep cleansing may have aided in my recovery. This flare is only 2 weeks now, making me wonder if i could buy so more time with the magical white pill.

Oh almost forgot, I was diagnosed with Pancolitis with possibility of Chron's disease. Another confusing thing to me, cause i thought the biopsy should tell the difference. Again so much confusion, seems like the more i look for answers the more confused i am.

As you can tell I have lots of questions and topics so I'll probably be a regular on here, I'll try to get better at theses posts, I think I ramble and get off topic a lot.

take care everyone

Coming to grips with this disease was tough to do for me also. After dx, I took my meds and tried to live life as I had before, despite all the signs that were telling me that that wasn't working. It wasn't until my doctor and I discovered that I was allergic to the Asacol I had been taking for over 2 years that my condition finally set in to my brain. When I stopped the Asacol, despite how lousy I felt on it, life without it went into the crapper, literally! I am now making all the changes to my diet that I had been skirting for so long. I started keeping a food journal which is such a great tool that I'm angry that I didn't try it earlier, even though at least 5 health care professionals told me I should be keeping one. When I'm around family and we're going out to dinner, I assure everyone that they can get anything they want and don't worry about me, and then I end up getting soup or some non-threatening appetizer and drink water. I finally gave up soda and beer. That was traumatic in itself. I guess it took feeling lousy to make me realize that I was mostly responsible for how I felt. I just wonder if I'll forget all the lessons I've learned recently when I start feeling better again? I hope not, but if past behavior is a good predictor of future actions, I'll be in for a rough patch soon. Might as well start banging my head against a brick wall.

Hi...what meds have you been on during this time??

welcome to the forum whyowhy.

quincy

Seems the prednisone is worth trying once at least, if you are suffering. You might be OK with it, although the side effects are uncomfortable. I have no permanent effects after 20 years of occasional use, and am still testing fine, like kidneys and also bone density.

Hello,whyohwhy, you just diagnosed my issue!

I am trying to help my husband into remission, and I get on here for ideas and advice. I feel the same confusion as you do....it must be the analytical personality!

We have looked into the natural ways to get there, and stay there. I have researched quite a bit, and we are currently trying the SCDiet. He is in the process of tapering off Pred. and it didn't help this major flare although it helped the last one (6/06) He has had many minor flares in between.

He is currently on Intestinew:L-Glutamine, N-Acetyl D Glucosamine and Gamma Oryzanol, ginger, marigold, marshmallow, and cranesbill. No yeast, wheat, corn, soy, gluten, salt, sugar, dairy, animal products, binders, fillers or artificial ingredients. Vegetable capsules.

He calls it a veggie garden in a capsule LOL although it's not.

 

There are so many variables for each person, that you are going to have to find out what works for you. I was overwhelmed with allthe ideas here, that I started keeping track of his history  and then reading through what others have tested and tried. Trying to compare this with this works, and that with taht probably won't - but set the thought aside as a possibility in the future.

 

The best thing to do right now, is get the flare under control and in the mean time keep a food journal. The journal will be a great resource of what will help and what won't as far as foods. 

 

To add to our confusion, they have dx him with CD but all tests are inconclusive. The more we research, the more we think it's UC. They are treating him both ways like they aren't really sure either, besides they both have similar treatments.

 

Hope to see you "better" soon.

Momma duck your are an amazing wife to be doing that with him or for him. I thought it was a blessing to be alone in this(single, no kids,heck not even a dog), cause i would hate for anybody, my age especially, to have to put up living with me like this.
I just started my first Prednisone at 40 mg yesterday, feel it a little so far. I'm gonna be starting the CSD soon myself, just bought the book today, half off : )

The variables you mentioned are what drive me nuts. It's almost as though you can't treat IBD as a whole. it's beginning to seem ridiculous for any doctor or patient to take that approach. I dont care if its UC or CD. All the differnet levels and people, and lifestyles,etc, etc, etc.

I'm wondering if i should change career paths. Study the heck out of this subject and find a career involved in it, maybe write a book or become a dietician.
Cause The health community and UC, CD people need to be highly more educated on the individuality of this disease and thus the treatments. I'm Astounded at the lack of resources provided to me during all phases of this. Everything from disease knowledge, to medication programs, to support groups, to treatments, etc, etc. Here I am 16 months later and it took my getting very severe, to jump into this myself. And only because I have the time to do so (very blessed for that) without totally shattering my life. And because I believe that knowledge really is power, especially in this type of arena and have a intense interest in this now.
Maybe a non profit organization, we could publish packets of info and provide them to every GI office in the country, or even other countries, why not. I wonder if the drug companies would sponsor something like that.
This is all starting by me wanted to help myself, but it's been such an eye- opening experience, I feel if i have some success in healing myself or even just giving it my best shot to be healthy with this, I have got to share that with people and use it to help others. even if that help is nothing but info and support like we can do with each other on here. Thank god for the internet, i don't know how i would deal with this with out it.