Skeptical

[Hiker]

Hello. I have been reading your forum for a few months and have learned a great deal. Thank you. I am 46 years old and was diagnosed with having early onset Crohn's along with UC. My initial onset was scary since I knew nothing about Crohn's or any other GI issue. I had severe cramps and would pass something that looked like pieces of my intestine. I had a colonoscopy and was given a lovely set of pictures taken during the procedure. They showed an angry intestine full of ulcers. My doctor's first response was to put me on a high dose of meds and then move into Prednisone but I declined the Predisone due to having awful side effects in the past. So, I went with Asacol. Unfortunately, Asacol didn't work and I ultimately ended up on the steroids. They helped but the side effects kicked in quickly. I felt much better and while I was on a month long camping trip across the US, I took myself off the Prednisone. This worked for me. I had short lived daily pain but it was better then taking the steroid in my opinion. When I came home and visited the doctor he didn't have the same mind set as me. He wanted to start me on Imuran immediately and I declined again. I just didn't feel bad enough to take them. After a month of daily, short lived discomfort, I agreed to go on Imuran because I was worried I was going to cause damage to myself. So, I am on my 3rd week of Imuran and feel pretty good. However, I had stints of time like this before Imuran. I guess I am skeptical if I really have Crohn's or not. When I hurt...I have it. When I don't...I don't have it. Does anyone else struggle with this mind set? Thanks for reading and good luck everyone.

 

[thejdubb02]

Right now I am the same way. I am tapering off of Prednisone at the moment because my newly started Remicade seems to be working. I have UC and will find for sure this week if it's Crohns after my MRI results come back.

My experience thus far is similar to you. When I hurt and bleed its obvious but when I take Prednisone I don't. It took me finding another doc who could really speak to me to understand.

I would often try to self regulate the prednisone but would always make it worse for myself. I also declined a few drugs and that was bad also.

It took my doc it is up to me in the end but I am the only one who can let him try to help me. Once I agreed it was a process to find the drugs that worked for me. But what's a few months of discomfort and hard work to find what works for you?

Now I'm slowly getting off he prednisone and my doc is confident that the Remicade is it for me. If he's right, he did his job and I did mine... And I am feeling great now.

Find a doc you trust is working FOR YOU! someone that doesn't make you feel skeptical.

Just my two cents. Good luck with everything.

 

[Hiker]

Thanks for the reply. What is the diff between Remicade and Imuran? Hope your MRI helps you understand what is happening. My MRI didn't confirm Crohn's. We are going off of my colonoscopy, symptoms and response to Pred. Thus my skepticism.

 

[DennisD]

I go through the same skeptic thinking when it comes to the meds. The scripts alone, 8 pills a day, makes me cringe. I have mild case cd and I am on pentasa as a maintenance med and entocort, which is the steroid. I could live on the entocort but they say it's only good for 45 days. Plus it has the steroids side effects. I self dose the entocort, taking 1 pill instead of 3 and skipping days when things are calm.
Weren't you put on a maintenance treatment?

 

[Hiker]

I am not sure! I was diagnosed, put on antibiotics, then asacol, prednisone and now imuran. I think that is my maintenance plan. I'm only 50mg a day right now. Not feeling great tonight but I am not miserable.

 

[thejdubb02]

Great post about differences between Remicade and Imuran:

http://www.crohnsforum.com/showthread.php?t=21471

Check it out. Good luck!

 

[Hiker]

Thanks, I will look into it!