Introduction

[Ilysha]

Hi,

My name is Ilysha and I live in LA. I was diagnosed with Crohn's almost exactly 4 years ago--when I was 28 and preparing for my wedding. I actually had been having Crohn's symptoms since I was 25, but they kept getting misdiagnosed as female/enodmetroisis. After months of illness and weight loss when I finally had a lapracopy that showed I did have fibroids, but no endometriosis, my mother got me in to a great GI who knew I had Crohn's right away.

Anyway, my Crohn's was under control with Remicade, Pentasa and 6mp. Then my husband got a job in Lake Tahoe and my daily stress became much less so I gradually got off the remicade and 6mp. Then, we moved back to LA and I was fine for about a year, but in December I started a flare up that I can't get out of. I'm on prednisone and that was fine for a while, but as my GI had me taper off I started gettting worse. So now I'm back on a higher dose while we wait for my new insurance to approve remicade and for the 6mp to kick again. I was really happy to be off the strong drugs because eventaully we want to have a family and although I'm not ready yet, I figured the sooner I could get off the strong stuff the better. But, at this point I have to throw in the towel. I'm having really bad indegistion symptions with the prednisone, which is new. My doctor gave me aciphex which helps some, but I'd love to know any other suggestions. Also, any pain control suggestions beyond a heating pad?

I'm pretty tired of three months of feeling exhausted and crappy all the time--it is nice to have this forum and know I'm not alone.

Thanks for letting me share.

 

[Nancy Lee]

Welcome.

Hello Ilysha!
Welcome to the forum!
I'm sorry you are having a rough go of it right now.
Hopefully your GI doc will get you feeling better soon.
In the meantime feel free to read though the forums,
ask questions...and post away.

Hugs~Nancy

 

[mikeyarmo]

Ilysha,

Welcome to the forum. I am sorry to hear how you are currently doing. Regarding pain, I used to just go in bed and rest whenever I had any. I really found this was the best thing to do, and avoid all food/drink/activity until the pain went away. Not the most fun, but it is what I did.

If you have any specific questions feel free to ask them!

 

[ruthymg]

Hi Ilysha, I used to do much the same as Mike and that was only eat bland foods in small portions but regularly and then got loads of rest. When I was first diagnosed and trying to get my crohns under control, I used to sleep from maybe 10-10.30pm to 10am, get up and have breakfast and the by 12noon, I was back in bed again till maybe 3pm then up again till maybe 10pm again. I did this for a good 12 months as my flare was so bad. I eventually went into remission and I have found every time I flare now, I just need plenty of rest. Its worth mentioning, that I do use pain killers, as its sometimes impossible to relax and sleep when you are in so much pain. I usually use something that is paracetamol or codeine based and stay away from the aspirin type pain killers. Hope this helps a little.


Ruth

 

[Ilysha]

Yes, Rest does seem to do the trick. I think my doctor has been loate the provide pain killers, but I'm going to ask him too. This flare up has just really taken me off guard because I seem to be getting worse, not better. Going off meds for a year was great, but now I almost wish I hadn't done it at all.

Thanks for the advice and words of encouragement,
Ilysha