Thinking about my options...

I've been posting enough recently that most of you know my basic story. I have been through most medicines without very good results. My colon is not bad now, probably would be considered in remission or only mild disease... due to Remicade. Unfortunately I believe I am being too far immunosuppressed. I have felt the effects of having mono for the last few months, which I attributed to Remicade side effects. On Friday I found out that I do in fact have mono, again (had it last fall). To me it feels as though my body is being held down to a point where it cannot take care of itself in regards to viruses.

I would like to have a better option. Stopping Remicade could result in the building of antibodies to it. Truth be told though, I got along for 9 years without it... getting by with occasional prednisone use to help calm flares. I was sicker, UC wise, than I am on Remicade. But I think each year that goes by I learn better how to adjust my life so that UC has less of a chance of hurting me.

If I knew I could stop and start Remicade again at some future point, I would definitely do so and try a couple less risky routes. The reason I am on Remicade is due to a sudden flare that hit me VERY strongly in January. I cannot be sure, but I attribute much of this flare to a certain very stressful situation coupled with a concoction took while seeing a Chinese Medicine man. I feel whatever the hell it was, was NOT GOOD. I had been managing without any medicine before that for the last 3-4 months... and before that it was just pentasa which was not doing much that year.

I would really like to try LDN. From knowing my body intimately, I get a sense that it would be more helpful to me than immune-suppressing drugs.

Fecal transplant is still an option, too.

I'm just thinking out loud. I feel somewhat pushed into a corner with Remicade due to the fact that it is not suggested to start/stop it. It was no miracle drug for me, but it has had its benefits along with its drawbacks. Intuitively I'd like to postpone Remicade and try LDN. If I were steady in my health I would never take the risk, but I am anything but steady.

If anyone has some input I'm definitely up for hearing your opinions. I'm not depressed or feeling like I need to make an immediate decision. I'm just very aware that I am held down by my health a majority of the time. I feel as though I am close to finding something good for me. What would you do?

p.s. I still have Humira as an option.

you could do surgery, it's in the back of my mind also. Also, I'll echo what you said.

Surgery is in everyones' mind. I'm glad you are debating what your options are. I'm in the same boat. Imuran kept me back and was lowering my wbc. So I decided to find another treatment.

I think mono needs to be your first course of action. I know how it feels, had it already. Get healthy, try LDN and give it time to work. Then try FT. Go to clinical trials that don't suppress your immune system.

Thank you, imagardener. I'm sorry to hear about your cancers. Best of luck with those treatments.

This is how I address decisions. I won't let anyone else decide for me, but I prefer to gain as much perspective on a decision as possible before making it. I absorb everything, then listen to my intuition.

I think my intuition is telling me that I am too far suppressed with my immune system, and that there is a simpler solution (besides surgery). I'm going to talk in detail about this to my GP who has agreed to really be there for me and address my concerns.

As a side note, diet modification is part of my life, too. I have never gone as detailed as you for a long period of time, but I know instinctively what I can have, and when.

Babe... if that's true then I would definitely try that way of doing this first. I'll do some more research. Thanks!

Thoreau, Humira is still an option. I'm not pushing Humira, It's not a miracle drug. It has helped me. Tryng to get it approved or weekly use. Sometimes you have to do what you have to do! Not everything works for everyone. Wish I did not have to take a biologic. It was my choice no one forced me. Hated feeling like crap. Diets never helped me , not willing to do FT. I don't think there is any simple solution to this dreaded DZ :(
Faith

Are you nervous about going off Remicade and flaring again? That would scare the crap out of me. Lol

Hey Thoreau,
I'm in a similar situation... been on remicade for two years... last scope showed that there is still moderate inflammation in my rectum, but the rest is clear. My doctor wants me to continue on remicade until it stops working... but i feel its hurting my body ... I also feel feverish often. Its funny you mention mono, cause I had it twice also, once when I was a teenager and once when I was 22. So yeah I really dont have any advice, sorry but I understand your situation!! Personally I am seeing a homeopath right now... a bit skeptical of course, but I have nothing to loose. I am also thinking about going on a medically supervised water fast. The idea of this is that chronic diseases are often triggered by an acute disease that did not resolve itself, and the fast allows the body to finally resolve it. Anyhow, Good luck with your decisions :)