I am definitely in a flare. I haven't had straight diarrhea yet, but I'm back to mush. There is blood, but currently it is only a smear on the toilet paper. I now have that awful, awful pain while sitting on the toilet, as my bowels move things out. And then for about thirty minutes to two hours, I sit on the couch waiting for the after-pain in my stomach to stop. But even after it finally abates, the aching comes and goes throughout the day. I do feel better towards evening.
I've had to put a small garbage can next to the toilet because I've had dry heaves while pooping. Luckily I had nothing in my stomach at the time.
And, one of the worst symptoms to me, the urgency has returned, to a point. Not as bad as at my worst, but enough that I now have to weigh leaving the house with the accessibility of the nearest bathrooms.
At least I know why this flare is happening. If you've read my health update for this month, you already know, but if not, here it is.
My G.I. and I had a miscommunication. I thought he told me to taper completely off of the mesalamine to see if I would be okay on Rinvoq alone. He said he told me to taper to ONE mesalamine pill a day and see how I would do on Rinvoq and ONE mesalamine pill a day. Within a month of going completely off of the mesalamine, I started going into a flare, although I did not realize it at the time. I am going to start repeating everything he tells me, so I know I am understanding correctly.
For over a year, I have felt better, but questioned whether I was in remission or not because I still had some symptoms. My stool never got completely back to normal and I still had a little urgency. As far as I was concerned, I did not consider myself in remission until my urgency went back to normal.
Well, now I know better. Remission does not mean 100% recovery. That happens for some UC patients, but not for all. While I still had some slight symptoms, I was feeling much better; no pain, no blood, no diarrhea or mush; no weight loss; no immediate urgency. I had only one, occasionally two, bowel movements a day.I was able to do all my normal activities of living and was not scoping out where the nearest bathroom was everywhere I went, or calculating when I thought my next BM would be and would I have time to do what I had to do and get home in time. In other words . . .
. . . I WAS in remission.
In my head, I used to complain about not being in full remission. Why was my stool still looking like fingers? Why did I still have only a minute to reach a toilet? (MUCH better than having only a few seconds. So awful.) Why, when wiping myself, it was still messy instead of a more dry wipe like when my stool was normal?
The continual education experience goes on. Shame on me for not appreciating what I had. I really do need to stop complaining in my head.
The good news is, I now know that being on Rinvoq alone is not enough for my condition. And, I have the wiggle room to go back on four mesalamine pills a day, which I have done, and today was a slightly better day than yesterday. The hope is that the four mesalamine pills will put me back in remission. Once that happens, I will taper down again, from four to three to two to one. ONE mesalamine pill a day. (I did double-check that with my doctor.)
Oh . . . and now I know not only what a flare is, but what remission is, as well.
What will I learn next?
© Colitis Senioritis 2024
Posts
