Hello

[RyanME]

Hi there, I found my way here through searching medical marijuana and ulcerative colitis.

I had a my first flare up vacationing in Hawaii in 1996. It was really bad and I was int he hospital for a week. I didn't go on medication and it took about a year to be back to "normal", and I didn''t think much of it again.

Fall 2011, I had a massive flare and was in bed with 104 fever and was in poor shape for 2 months and have never rebounded fully like the first time...I've been on prednisone on and off and mesalamine steadily from that point, but have had no real relief.

Recently I have been looking into the macrobiotic diet as a way to help myself. I'm reading "Controlling Crohn's Disease: The Natural Way" by Virginia Harper and Tom Monte. Not putting all my eggs n one basket but the meds I've been taking don't seem to help.

 

[Angrybird]

Hello and welcome to the forum

How often are you seeing your doc for check ups? What symptoms do you still continue to get? I am wondering if the mesalamine is strong enough to settle the tum for you and whether a different treatment regime should be looked at. Diet wise we do have a diet and sups forum that is worth having a look at to get some further info in this area: http://www.crohnsforum.com/forumdisplay.php?f=17.

AB
xx

 

[SarahBear]

Welcome to the forum, Ryan!

I'm also wondering how often you're seeing your doctor, and what they say about your continuing symptoms.

I hope things improve for you soon!

 

[RyanME]

Thanks for checking in Angrybird and SarahBear....I talked to the nurse practitioner at my GI doc about a month ago. You don't really get to see the doctor unless you getting a colooscopy. I'd like to find a new doctor/practice that is more personal as my current doc is high volume, and very inside the box as far as treatment goes. They gave me a large prescription for prednisone, and made sure I know how to wean off it if I have a flare. Its a task even to get some one on the phone. I know the docs are skilled in what they do, but on a whole I haven't been impressed with them. I feel more that they just go by the book and push whatever is new. They started me on Lialda, and then moved me onto Apriso when the Lialda made things worse. About 2 weeks ago I stopped the Apriso and instantly had an improvement. IMO mesalamine isnt working for me, but they just want to pound my gut with it. So yes I guess I have taken things into my own hands, but I'm not reckless.

On another note, since I started with the macro diet I have had a huge improvement in my health. That was 5 days ago if you can belive it! Not saying it's a silver bullet, but I haven't felt this good in months and my day isn't being dictated by the proximity of a bathroom.

I have an appointment with a counselor in a few days that I am really looking forward to. It seems the diet has worked wonders for some with UC and Crohns.

 

[RyanME]

Also about my their thoughts on my continuing symptoms...they got me months worth mesalamine enemas. That was the straw that broke the camels back.

 

[CLynn]

Ryan, I can't believe the doctor isn't seeing you regularly. My first GI was one of the busiest there was, so knowledgable that people came to him from 4 states around us, and he would NEVER let any of his patients go without seeing them in his office regularly, talking to us, letting us ask questions, etc.
So glad to hear that the diet is improving things for you!

 

[RyanME]

thanks Clynn,

Thats what I would expect in a doctor. Btw, I had psoriasis wicked bad on my feet when I was a kid, now just on my head, but tolerable. Oh the joys of autoimmune disorders

 

[Angrybird]

I wonder if it is also worth looking into getting your vitamin levels checked as it is common to have deficiences in this area with crohn's. I agree it is worth looking into seeing a new doc if the current one cannot take the time to see you. Have you started the Pred yet? Were you also given a calcium supplement to take with this?

 

[RyanME]

I've been on and off it a few times. Right now I been weaning and am down to 10mg. No calcium supplement. I appreciate the interest, thank you.

 

[CLynn]

Yes, Ryan, what a joy these autoimmune diseases are, lol! Elbows and knees for me, have it under control with a cream and vitamin D supplementation right now. Not perfect, but much better.