Back again for some advice

Three months ago my GI started me on Imuran and told me to start taking 8 imodium a day to help slow the colon down, he wanted me on the imodium because my family doctor had started me on oxy cotins to help with the cramping and to slow down the colon as well ( I was up at the hospital pretty well every day because of the pain that came with the cramping and I could barely get out of bed )

Now, my GI told me the Imuran takes about 6 months to a year to gain full effect. I know it's only three months but in all honesty the only difference I've noticed is there is no longer blood in my stool but it's changed to a black color. My family doctor said I've still got the ulcers but because of the imodium it is just soaking into the stool instead of coming out (My family doctor hates the Imuran and imodium by the way) Even though I still rush to the bathroom 10-20 times a day.

I'm also still on prednisone, it's almost two years and my GI told me I may have a disease related to long term use of steroids and wrote down on my chart that gets sent to my family doctor to check me for it (I couldn't make it out) because of "steroid abuse" I felt like *****ing my GI out when I read that. I never choose to be put on prednisone, I've tried several times to get off of it and I've ended up in the hospital four times because of it. My family doctor has told me to recommend another immune surpressent steroid to help me get off the prednisone but when I told my GI he told me straight out "Who's the doctor here?" I've also grown cataracks because of it and my 20/20 vision is now around 13/15 which depresses the hell out of me every day.

I get to see my GI on friday and would really like to try remicade instead of waiting a year for a pill to kick in that I don't think is going to work. I've also started to notice a sharp pain on my left side that shoots across mid stomach. My family doctor told me it could be my pancreas from the Imuran and has written letters to my GI about it and the GI responded that it's normal to have it flare in the first few months. My GI also wants me off the oxy's as soon as possible but I don't want to be off them. My darn bones hurt like hell, every days a darn struggle to get out of bed and I feel those are the only things that make it possible to get out of the house. I recently had a bone scan done and my family doctor told me I have the bones of a sixty year old man already (I'm not even twenty yet)


I don't know what to really do, I feel as if I'm stuck between my GI and my family doctor. My family doctor is a great guy and wants to help me but is basically stuck down by the GI just cause he's above him in the "System"

Also on a side note, I learned a few weeks back I have about four kidney stones and since then I've sort of been wetting myself a little bit, not much but just dribbles. Is this normal?

Thanks for reading my long post as I go back and read it I see I sort of rambled there. But thank you for any advice guys and gals.

     I'm with Fruitgirl on this one.  I would try to find another GI doctor.  I was on prednisone last year for seven months.  My GI doctor was having hissy fits but every time I was weaned off, within two weeks I was flaring again.  He put me back on the 6MP at the end of the summer but it took till the end of October before it kicked in with the prednisone.  The last round of prednisone he advised starting at 40 mgm with a 10 mgm per week taper until the last week 5 mgm.  This finally did the trick.

     I now suffer with osteoporosis due to so much steroid use over the last ten years but the prednisone is the only drug which helps me achieve remission...unfortunately.

Uuugh, that stinks your next closest GI is five hours away...where do you live? Just curious!

At any rate, if you think you're ready to try Remicade, definitely push him on it!

Eight immodium a day! That would cause me great discomfort -- pain! -- and is the craziest thing I've every heard.
Two years on steroids is equally outragious. Oxycotin?? You should not mask the pain and symptoms, you need to get healed. You need to consult with someone else.

Isn't 13/15 better than 20/20 eyesight? Sorry, your story is a bit confusing.

I'm going to go with the general consensus here and say you need to find a new GI!!!!!

First of all as you know prednisone can be extremely dangerous to stay on for that long... After being off and on every few months for 5 years, I developed the beginnings of osteoporosis at age 19, I now have to wear glasses all the time, and I have arthritis. I also had lots of troubles with my potassium and sodium levels on it as well. You should get off of it as soon as possible.

Secondly, it's dangerous to take drugs like oxycontin with Immodium because it can slow down your bowels so much that you develop a condition called Toxic Megacolon, which we are susceptible as it is with having UC. It doesn't sound like your GI really understands what he's doing and he's really putting you at risk.

I would definitely push for the Remicade as well, I was having TERRIBLE bone/joint pain but after my first infusion it went away completely and hasn't come back since