Going downhill a bit I think

Hi everyone..

Well, I broke down and went to see my doctor today about that darn right-sided pain that I've been having for the last 6 or 7 days.... She checked me out and felt my abdomen and after discussing it with another doctor decided to send me to the hospital for a CT scan to see if I indeed had appendicitis.. So.. I went home, (freaking out) got my husband and went right back up to the hospital. The technician was soooo nice and the Scan was uneventful.. except for the IV contrast which made me feel like I was peeing my pants! LOL...

Anyhow, the doctor looked over my scan results and my appendix is fine so they sent me home. I will hopefully get a complete report tomorrow... I'm guessing now that it is my ileum that is inflamed and I'm going to call my GI to see what he wants me to do. Also tonight my ENTIRE colon is gurgly and a bit tender, not too bad, but enough to notice..

I did take my last dose of Prednisone yesterday, 2.5mg. I didn't take any today and am curious if that is why I'm feeling so darn yucky tonight. I'm thinking of taking 5mg tonight and then going back down to 2.5 for another week, then 1mg for another week....

Gosh, I hate all this happening at night when the Dr's offices are closed and I'd have to wake someone up to talk to them.. (it's 11:30pm here)

Thanks for listening to me vent... I am so sick of feeling sick

Hey Quincy :)

It's nice to know I'm not the only one who's up late :) Anyhow.. I haven't taken the Pred yet, but I did sip down a small glass of Almond Breeze Vanilla flavored Almond milk and it did soothe the gurgling part of my intestinal distress.. I was on prednisone for SOOOO long I'm pretty hesitant to take it again, even though 5mg is a small dose.. but I will bite the bullet and take it if things don't improve soon or I get worse during the night tonight.... I have the pill sitting here on my table in front of me just in case.. LOL.... I will keep you posted and I'm also glad it wasn't appendicitis~!!

Hi Marty and thanks :) Another night owl... lol...

Yes, I'm very sick of being sick.. it's like the slightest thing that happens now sends me into an anxiety attack and I NEVER used to be like this... But then again I've been hit with a couple of major blows since finding out I had to quit Remicade... I think that after some time and the dust settles I can get back to normal. I'm hoping this recent side pain is all from stopping pred and funny thing I just thought.. It started the day after I went down from 5mg to 2.5mg... I think tomorrow am if I'm still having considerable pain, I'll go back up to 5mg and do the taper again but allowing 2 weeks per drop instead of one..

This is such a crapshoot of a disease and with everyone having different reactions to things, it's so it's hard for one person to advise another peson as to what to do to help... ugh... lol...

If you have been on pred for a while it is very common to feel crappy when coming off. Signs of pred taper are very similar to a UC flare, unfortunately. I never could tell the difference but I always tried to hang in there and deal with the misery before upping the pred again.

Sue

I just finished Pred after about 13 months on it, and emotionally, I feel GREAT. I HATED being on it, since I suffered nearly every physical side effect possible, and it really didn't "fix" me at all. I've been feeling really crappy all through December, and I've seen my GI a couple times, but he does NOT want me to go back up on the pred at all. He's very against it (boy, I sure wish he was my doctor when I first got diagnosed!)

I know everyone is different, and we all manage our pain and symptoms differently, but I would be VERY reluctant to go back to pred for ANY reason, even if I was feeling really awful. I honestly think I would take surgery over steroids at this point.

Sorry to hear you feel so awful.

Thanks so much everyone for your replies...

Ok... this is soooo weird and sort of a long post... :)

After posting last night I stumbled across one post here that suggested a possible gluten issue instead of U/C... Well I did some research on Gluten and it is an inflammatory food.. If you have U/C or not, it is considered an inflammatory food, but most people don't get effected by it.. Well I did go off gluten a few months ago and didn't notice any changes in how I felt really So... in the last couple of weeks, I gradually introduced gluten back into my diet, but only by eating Ritz and saltine crackers..(I LOVE Ritz and saltine crackers!!!). Well at first I felt ok and thought I didn't have a gluten problem.. Then once I tapered down to 2.5mg of Pred from 5mg, I started getting this pain and burning sensation in my lower right abdomen and thought it was either the appendicitis or my U/C starting to rear it's ugly head...Well after researching about Gluten a while last night I thought, I'm not going to eat any gluten tomorrow (today) and see if it makes a difference in how I feel.... Well LO and BEHOLD.... the pain is almost non-detectable today!! Friggen weird... I'm going to keep avoiding Gluten and see if I keep getting better... But today, the pain is about 85 percent gone and it was sooo constant for over a week now and really bad just last night.. ( I ate some Ritz crackers around 10pm, thinking it would settle my stomach... GUESS NOT!! lol... my entire colon started rumbling and the pain was terrible... well I drank a glass of almond breeze around midnight and it did calm the gurgling part of my discomfort... Weird.. Now I'm thinking I do have a gluten allergy and the Prednisone was masking it until I got down to a really low dose..

Thought you might find that interesting....

Oh and GLOVE.. I had my Spinal tap on Tuesday and it will be 3 weeks before I find out the results.. I did end up going back to that Neurologist because we couldn't find another one that could get me in any sooner.. BUT.. she was Soooo much nicer this time and did an awesome job with my spinal tap.. I didn't feel a thing during the procedure and except for a realllllly sore back now, I never got the spinal tap headache and feel ok for the most part....

I'm verrrrry excited to see if this Gluten thing is really the case in my situation.. I can't believe how much better I feel today since I didn't consume ANY gluten.. I still have the pain but it is hardly noticeable today... Hopefully I will continue down the road to feeling better now!!!