Posted 8/26/2015 11:44 AM (GMT -6)
A Few Things:
1. At this point -- I don't think the supplements are going to drastically reverse the symptoms. Saying this from experience; they worked when I saw some mucus or a tiny bit of blood. However, when you pass a critical point they are not going to work well enough I do not think. Again, just my experience. I'd hate to see you place too much hope once in such a stressful situation.
2. Have you ever done a decision tree, or similar analyzing of decisions? It might provide some comfort for you to weigh out trying Entyvio. If your options are low, then the choice to try that gives you more hope than not trying it.
3. I honestly never felt that Bentyl did anything for me regarding cramping/pains. I took it often when in the first five or so years with the disease. My reaction was usually just to keel over in pain and rest it out... for better or worse. I would recommend a heating pad to the area if that sounds good.
4. Let go of the feeling that you can control the disease. If anything, that anxiety over what you might have done wrong is just aiding the amount of stress on your body right now. After 12+ years with UC, I can assure you that you will always tend to wonder once a flare starts what you did, but that it is often not worth thinking deeply about after you've thought it through one simple time. The repeated chain of worry will be hard to handle along with the flare symptoms.
5. I feel that whatever causes these flares in people, that unless that component (in my mind a physical component) is changed, flares will always eventually happen. You have two options right now: find that physical component (that researchers can't even seem to find), or do your best to deal with the effects of that component. Some people are lucky, and find something that changes their life drastically. I remember reading one person years ago on here who tried a triple antibiotic therapy, and then felt they were cured. Others do something like gluten-free, and it just works. It sounds like you're in the area where you just have to treat the symptoms the best you can. That isn't a defeatist statement; it's a progress plan to follow to do the best you can.
6. The one thing that always held me together amidst the flares, was taking control over other areas of my life. Even if my body was terribly ill, I always held in mind my own vision of what control was like for me. To me, it was a small cottage/cabin-like home, in a bit of nature, with books, a garden, and knowing I'd gotten myself to a point where my needs were small and I could live flexibly if need be. Not that it's easy to get to a point like that, but over the years I created more of that life, and it left me feeling less chaotic when in flares.
Just some of my thoughts; trying to toss ideas out that can help you feel better.
"The price of anything is the amount of life you exchange for it."
30/Male Dx UC 2003.
Have used: 5-asa's, 6mp, Remicade.
Presently: Gluten-free diet, no meds.
Have chronic pain, Mayo told me likely triggered from Remicade, and a change in my brain makes me feel pain though I'm not on Remicade anymore. It is supposed to slowly go away with time.