Controversial Posts

3TC I totally get your point. I am on xeljanz now (not a biologic but broadly similar degree of immunosuppression), and I already discussed with my doctor that if it would work indefinitely I still might have to rethink taking it once i get to ~55-60 because of the increased risks. But still have a few years to go before I get there so hopefully new treatments available by then!
After I had tried 2 biologics and multiple dose adjustments on azathioprine with limited success, my GI also said to me "You don't have to do this any more, if you've had enough. You can go for surgery if you want". I decided to try what was then the "last" drug before surgery, and it worked... been in remission for 3 years now.
My point above about the biologics is that some people come on here and bash the whole medical industry and profession for providing options that 1. Don't work for everyone 2. Can be expensive (depending where you live) and 3. Can have undesirable side effects. My point is that these drugs have been revolutionary for many and that's not something to be sniffed it.
Always really grateful to hear your surgery success story. I still might need surgery one day.
Take care!

The quick healing caused patches of scarring, which caused obstructions. At first I thought I was flaring and constipated.... But I was obstructed. Before surgery I felt this acid like pain in the portion of the colon that was diseased. The pain was steady and unrelenting. It made me feel flue like. After surgery, when that portion was removed, I felt better. Healthier.

I have a Hartman's pouch, part of the sigmoid attached to the anus that was left in. (Originally the Colorectal surgeon and GI thought I'd be hooked back up.) That section is where I have active disease and fistulas. It still feels almost constant pain. They went back in and removed a portion of it. I felt much better but not as healthy as I think I will feel when it's all removed. I am not going to be hooked back up. I don't see the point in it. I feel much better with an ostomy.

Heat intolerance started when I first got sick. I became "allergic" to sunshine and would break out in hives all over my body whenever a portion of my skin was exposed. Since my 3 surgeries that has all calmed down some. I take zofran before I go outside if it's over 80 degrees out with any humidity. I slather on sunscreen. If I don't take zofran I immediately start projectile vomiting when I get hot.. (even in a shower) and no sunscreen means I still get blisters on my skin from the sunshine. Although now it only occurs on where the sun actually hits the skin. And now the steroid skin creams help after the fact. I know that right after my Remicade infusion I can be alittle more lax about my behavior, and that when I am flaring or it's right before my infusion I need to be extra careful.

So my issues are sorta separated. Colostomy and up has scar tissue and I have to watch for obstructions. Hartman's pouch and below has fistulas and active Crohn's/UC.

Sometimes it's a little confusing for even me.