Flare After Flare or One Really Long One?

Have I been having one flare after another or just one really long flare?

I looked up what the definition of "remission" is, and basically, it is an absence of symptoms related to a chronic condition or disease. Some defined remission as a partial disappearance of symptoms due to medications.

Okay, then. 

My first symptoms were in January of 2021. It has now been over 27 months and I have never had an absence of symptoms since then. Partial, yes. Full, no.

I have tried four different maintenance medications to no avail: Balsalazide, Sulfasalazine (terrific side-effects), Budesonide, and Mesalamine. (My G.I. doctor wants me to stay on Mesalamine in combination with other medicine we're trying, but alone it did nothing.) The only time I come close to full or almost-full remission is when I'm on prednisone. But of course, prednisone is not a maintenance medication because of short and long-term undesirable side-effects.

I've been on four rounds of prednisone (currently on fifth) and my symptoms always get better. But then I taper off, and BAM, there they are again, usually after four to six weeks of being off. Rinvoq seems to be the only medicine close to helping, but I'm getting ready to go on a lower "maintenance" dose, which is how it is done. However, I haven't gotten to a complete absence of symptoms yet, which is why I've been put back on the prednisone.

So that is why I ask . . . have I ever been in remission? Or in partial remission? Is "prednisone remission" a thing?

When someone asks me if I've been in remission, I honestly don't know how to answer them. My gut feeling is, well, no . . . not yet. But I have had bouts of being and feeling better.

I guess that means that I'm going forward with the thought that I haven't reached remission yet, but we're working on it, still in the stage of experimenting with various types of available medications and waiting upon the results.

Not the shortest answer, but probably the most accurate. 

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© Colitis Senioritis 2023

Update April 2023: Fault on Both Sides - And No Bananas!

I had my latest gastroenterologist appointment a few weeks ago.  Apparently Dr. Weber and I had a misunderstanding. He did want me to go on the Rinvoq, that part we were together on. But he wanted me to start back on the prednisone (which I did) and STAY on the prednisone (which I did not, but would have gladly done.) It was probably both of our faults, nevertheless, it was a frustrating miscommunication.

So he told me to wait a couple of weeks to see how my symptoms were and if necessary, start the prednisone again. My symptoms on Rinvoq are mostly better, but mostly is not getting me where I need to be. That is why I'm back on prednisone, hoping that will bring my condition more up, where hopefully the Rinvoq will maintain it. 

My biggest problems right now are the marginal consistency of my stool (about a 4-6 on the Bristol Stool Scale) and my urgency is about 45 seconds. I'm going to the bathroom about three times a day, which isn't bad, but my normal used to be once a day. I have been having some achy stomach pain after some bowel movements that lasts for a few hours. Better than it's been, but as I said, not quite there.

I've also decided to stop eating bananas for awhile. I was eating one a day with lunch, thinking it was an easy way to get some fruit into my body. But I had forgotten that before my colitis symptoms started, I ate a banana everyday, and started having loose stool. When I stopped the bananas, my stool returned to normal. I know bananas are supposed to help solidify things in that area, but it had the opposite effect on me. I think bananas might be adversely affecting my colon, so we'll take a break and see what happens.

And now we wait another month!

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