Scared to Death

I have been in a really bad flare since June. I have tried
Lialda, and other forms of Mesalamine, Rowasa enemas, I can't hold in, I am on Uceris, had four shots of Humira, and I am passing blood clots today, that are enormous. My hemoglobin so far shows that I am not anemic - but am bleeding more and more. Seeing new Dr. tomorrow and also trying acupuncture. I have no life- can't work and can't socialize with friends because I am living in the bathroom. I haven't tried Entyvio yet- but until I get the insurance to approve it, and until I would start it- could take such a long time- they say it takes a while to kick in also. High doses of Prednisone haven't helped. My husband and friends are getting tired of hearing me complain. I am at my wits end.

Hi there, Carioke65,

I am so sorry you are having such an awful flare-up -- that's the worst! I know there are lots of great suggestions around these forums and lots of people who can empathize with what you are experiencing, especially since it can be hard for our family and friends to understand the pain of an invisible illness.

In addition to the treatment you are pursuing with your doctor, I was curious how you are doing in other areas of your life, holistically speaking. You mentioned not being able to socialize since you are living in the bathroom at present. Do you have to work outside the home? Do you have much of an appetite lately? How is your stress level (separate from the stress your symptoms are undoubtedly causing)? Are you able to rest throughout the day and night?

While it's true that none of these things cause our disease, I am a big believer in the importance of self-care since we need to support our bodies the best we can to give them a shot at healing from a flare-up. How can we support you in taking care of yourself today? I am sending lots of positive thoughts your way to start.

Actually started acupuncture
today- hope it helps!

Hi!
My doctor is hesitant about using 6MP- he said it could cause Leukemia.
I am on Uceris, Humira, and will be starting Butyrate enemas by Friday- pharmacy is compounding them.
There is a new enema gel that supposedly adheres only to the inflamed parts of the colon- I think it is a trial in one of the Hospitals in Boston.
Imam going to check it out.

BTW- The Mesalamines also made me worse, and am finding very potent probiotics, also make me worse..... What helps some people, doesn't necessarily help other people. Each case of UC is a different disease to each person. I guess it is a crapshoot- ( no pun intended)

What about a course of prednisone? rectal steroids and 6mp. The cancer risk is quite low, I believe it's lymphoma not leukemia..