Pred or Uceris? Bridge to Entyvio?

Thanks for asking, T. Flat out, cramping, bleeding a lot.
I may need to consult with you on pain meds. They gave me bentyl & said it'd help with spasms, but i'm reluctant to take anything.... Even to start introducing the supplements. Maybe will try Lglutamine first. Just trying to get through the segments of each day.

Been reading at length about Entyvio. It turns out they are seeing antibodies develop, just as is common with remi, especially when not done in conjunction with an immunomodulator (and I can't take any of those due to adverse effects/allergies). So looks like there's one drug left, & if it works it takes a long time to kick in and isn't sustainable for many patients due to antibodies. I also know Pred didn't work to calm my last major flare so it's a question mark as to whether it'll even help now in next month. I'm trying it in any case. I'm feeling very discouraged tonight.

Also my mind is turning over what I did to trigger this. Didn't manage stess well enough. Maybe it was just a matter of time due to having no maintenance drug, but you know how the mind works... How did I contribute to this? What should I have done differently to stay flare-free? Unproductive thinking but so it goes :(

Seeing dr tomorrow & I wonder if there are other answers out there. What's next after these 'mab' drugs & how long til market, I wonder. Any hope?

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.

Wow, T! these are enormously helpful insights & advice from your experiences. I'm truly grateful you took the time to share with me. I will reflect on all of it. I feel back at square one in my relearning after all these years with this disease.

Saw the dr today. If Pred doesn't kick in within 5 days, he wants to test for c diff just in case. I don't think I have it. He said immunity is weakened so our risk is increased. Then he may want to do a scope next week or the following week in order to see what's going on.

Said there has always been possibility of chrons colitis due to some previous higher up skip lesions, following years of proctitus & years of the extending UC. Don't know much about that or what are implications... Can UC develop into it? What would it mean? No surgery solution if it ultimately got to that point?

He was surprised remi bought me so many months flare free and thought I'd reflare in 6 months without maintenance drug. He still hasn't seen many cases of our delibilitating pains from Remicade. So that surprised me because it's now so well established even though drug companies don't talk about it. Rheumatology seems so well aware of what these anti-TNFs can do, and much more than GIs.

Talked about Entyvio as possible next step. He said they are indeed seeing antibodies developing like with remi, esp not taken With immunomodulator like Imuran, 6mp etc. So not a good solo maintenance drug for long run, for someone like me, while Remicade has been for some.

As for food, @ ipoop, thanks for suggestion to eat more. Seems impossible due to cramping & pain. Dr also said fat is hard to digest when flaring. So I think I'm instinctively avoiding it. How I went to work for a day was to go in late and then eat nothing until night. Not viable for long term, I realize. He said taking in lots of fluid is important due to so much blood loss.

I'm truly humbled to be at this place. No good choices ahead, it seems... Just got to go a step at a time. Thanks for continued support & ideas.

T: Hoping you get some help / Info from your pain consultation. Will be interested to hear.

Having had a slight flare up a few weeks ago, the dr. put me back on pred (20mg). I was also on Uceris (which did not work). I take Apriso everyday and have been on it for a while. The pred did work and when I go on the 24th for a follow up, I hope to be able to ease off the pred.
I am feeling good and have even started to eat some foods that were a no-no...and have been able to enjoy an occasional few sips of wine!!!
I believe the pred works...but, I don't want to be taking it so much.
Hope you get to feel better soon.