Posted 9/15/2016 1:18 AM (GMT 0)
Dependence on pred in what way? When we say we were steroid dependent, we mean, we needed it to keep our UC at bay. We weren't dependent, like we needed a fix, to get through the day. The prednisone only has bad side effects - except that it reduces inflammation. It made me a fat, hairy, pizza face. Dependence on it to control your symptoms is a bad situation in itself, but it's likely not going to be the case, as it sound like you've only tried the very first tier of medication for treating your UC. You have lots of options. Are you taking mesalamine orally? or just canasa in addition to prednisone? You should try some other rectals... I don't know what the extent of your UC is, but canasa really only treats an inch or two, literally where the suppository sits in the rectal area. An enema can be foam or liquid and that spreads and travels further. If that's the area you need to treat, request enemas!
As for your emotional roller coaster, I can relate. I was diagnosed with this around your age, and it was very difficult to accept that my health could go from 100% to 0% in such a short period of time. I recommend you see someone if you're really struggling with the emotional aspect. There are medications, or just plain therapy can be helpful. it's good to speak with people who can help you to work through this. And, of course, you can come here, that's probably 99% of how I got through the stress/worry. Though, while on steroids, things are even more desperate and depressing, a few times I had to take antidepressants to get it out of my head.
So, yes, I think your taper is way too fast. I wonder why your doctor hasn't explained the longer term plan, beyond prednisone? What med are you going to use for maintenance of your condition? You taper off, then what? Of course if you're not doing something to maintain your remission, you will fall back into a flare up. Some people have luck with diets or supplements, but in my case, severe UC, it was very difficult to control and diet did nothing. I had some luck with treatments for a while and after years of struggling with ups and downs, I had surgery. I don't tell you this to scare you, but to let you know that even in the WORST case, things can end up better than ever. I am so thankful to be done with all the UC, stress, ups and downs, accidents... I remember when I was in your shoes, reading about the options and seeing surgery listed and being like OMG!!!! Thinking I would rather lose a limb. Really just feeling hopeless and wishing with every bit of energy in my body that it would never happen to me - of course, I knew at that moment I was doomed for it to happen to me. Welp, the verdict is, it was the best possible thing for me. I feel so detached from UC at the moment. It's something I never thought I would live to experience after 10 years of struggling with the dreaded illness. So think positive, surgery isn't the worst thing in the world and it's not going to happen to you.
Talk to your GI in the AM. Find out the plan. If you're not getting the response you want from this doctor, get another opinion. When you have a chronic condition, it's important to work with a doctor who listens to you and explains things, spends time, is interested in IBD... there are IBD clinics even, at major hospitals, usually the doctors at those clinics are the most interested, the most knowledgeable and the most up to date with treatments.