I am refusing prednisone

I'm not in terrible pain.  It mostly feels musoskeletal.  Almost like my stomach muscles are constantly tense and my back is really sore.

I was in the hospital for 4 days with ileus and gastritis.  I was given pred unbeknownst to me and I couldn't understand why I felt so flushed and hot and my ears were swollen up so much that I couldn't even bend them with my finger and they hurt and burned.  When I found out what they gave me, I told them to not give it to me anymore and I refused it the last three days I was there.  The ileus subsided and the DR (who didn't even bother to come talk to me) discharged me with a script 10mg 3/day for a week then 10mg 2/day for a week and then one a day until gone (total 60 pills).  That was last Thurs. and I haven't filled it.

I'm taking Flagyl and Cipro and having BM's.  Nothing to write home about but not watery (crossing fingers).

I quit taking my Pentasa since all of this started and would really like to go back on it but I am afraid that it will clog my small intestine up.  I'm so paranoid that I won't eat much at a time because I feel like if I am clogged up, a little food should be able to get through better than a reg meal.  I gorged myself the day I ended up in the ER and had to have my stomach pumped... never again!

So does anyone know what would have caused the ileus?  Inflammation?  I didn't get any answers.  I didn't even know it was ileus until I went to the hospital and got my records.  And I am still confused as to what it is and how to prevent it.  I feel like a ticking time bomb and every like ache and pain is freaking me out.

Sorry to write a novel.  I'm just a mess. 

I agree that I need to talk to someone about diet.  I would eat dirt if I knew that everything would be okay.

Do you think 80mg to nothing messed me up?  Aren't you supposed to taper off or is that if you've taken it for a week or so?

I was recently on 80 mg of prednisone a day for two weeks for Scleritis.  Anyhow I am really hoping this in the last time I have to be on it!

80 is the highest I have ever been on this drug and I could not sleep at night, I would lay down and all I could hear was my heart beating loudly and quickly.  My moods were just awful--I cried at work, I had a really bad attititude and I was pretty depressed.  I also became paranoid and stressed over things I usually wouldn't.

I am now down to 25 mg a day and tapering.  If my eye flares back up, I am going to see about having the steriod injected directly into my eye, because I just cannot take the prednisone any longer.  I have been on and off (more on) this drug for nearly a year now and the side effects are just awful! 

On the flip side though, the drug worked very fast at clearing up my eye and getting rid of the pain.  It is just unfortunate that something that can do this has so many negative effects as well.

It is awful the doctor wouldn't even come and see you while you were in the hospital. 

Sometimes I wish this disease would affect something other than my eyes...joints, something else!  The eye pain is so unbearable when it gets bad and that is when I really forget about all the bad stuff from the pred. 

Best of luck to you and I hope you feel better soon!  Pentasa has worked for me, as far as the GI tract goes.

I have just read such horrible things about pred. that I want to talk to another DR before I totally decide that I will try it.  I don't feel as bad as I did.  I have some stomach pain, but it's weird like a pulled muscle or something and it's always in my upper left quadrant.  I don't even know what organ is there.  I'm thinking it's either my stomach or my colon.  I just want to get an xray and stick my finger right at that spot so someone will get a good look there and tell me what it is.  I also have a fair amount of back pain.  It seems to get better if I lie flat on the bed w/no pillow.

My doctor came in once after I was admitted.  And he did an endoscopy and that was it.  He didn't discuss the findings with me or have anything to do with me after that.  I was totally coherent for the whole thing.  I am immune to the Versed that they give you during that, so it wasn't like I was loopy.  He has no bedside manner and there is a language barrier because he is hard to understand and I feel like he doesn't understand me when I talk.  I waited all day to be released from the hospital and the only person I had to ask questions to was the nurse discharging me.  I live in a small town and my choices are pretty small as far as gastroenterologists go, but I will travel if I have to because I don't feel right about the one I have.  I am going to a new GP soon.  I decided to go to a DO and not an MD. I am hoping for someone who won't just barely talk to me and write me a prescription. 

about the SB diet... can a vegetarian go on one?  I've been a vegetarian for 16 years.  Sometimes I wonder if being one caused all of my problems, but I can't ever see myself going back.

I started back on my Pentasa but I only took one pill, so I might as well not bothered.  You guys know how big those things are.  I just keep picturing it clogging up in my duodenum.  My Crohn's is mainly in my small intestine, so I even wonder if Pentasa is right for me?  Their website's video says it goes to the duodenum, jejunum and ileum, so I would think it would be okay for a Crohn's patient to take, right?

So, far I've been able to stay away from Prednisone despite my GI saying that he would just put me on it for 2 weeks.

My Dad was recently diagnosed with Temperal Arteritis which is inflamation of the arteries that lead to the brain.  In order to avoid going blind and/or having a stroke he has to be on Prednisone for a minimum of one year.  It is the only treatment for this rare disease.  Within two weeks of starting the prednisone he became diabetic.  Within a few months he had developed a heart problem and clots in his lungs and legs.  he had to start on Cumadin (a blood thinner).  Recently, he perforated his colon and had to have an emergency partial colectomy.  He is in ICU and just had the respirator taken off today.  He has Paritinits from the infection caused by the intestinal perforation.  Basically, he is going through hell.  And everything that has happened to him has been a sort of domino effect from the Prednisone.

So, yes, avoid prednisone as long as you can.  But, keep in mind that sometimes it is a neccesity.  My Dad didn't want to go on it but if he hadn't he would have most likely had a stroke by now.  

My GI was honest with me from the beginning and told me that if I went on Prednisone I would most likely develope diabetes based on my family's history.  Thank heavens for an honest doc!  It hasn't stopped him, however, from suggesting a short term, 2 week, dose of it.  I, personally, will have to be doubled over in pain and rushed to the emergency room and told that nothing else will help me before I go on prednisone.