Hello everyone!
I hope this post finds you in good health and spirits! The only excuse I have that I haven’t written in a while is because, yes, I am out of remission and doing okay, just not terrific. I would like to let you in on an overview of what has been happening to me during this time.
Going back to the last update that I posted, I had felt an all too familiar sign that my fistula may be coming back. It did. The Entyvio had stopped working for me around August 2023. My doctor had taken me off the medicine and replaced it with 15mg Rinvoq, still along with my 90mg Stelara I was already taken also. During that time, my Crohn’s Disease spiriled out of control because I had to wait at least a good month for the insurance to approve it. Imagine that. When I finally got the approval, the Rinvoq took a few months for me to notice a slight change for the better. When my Crohn’s wasn’t doing as well, I was in a lot of pain on my right side of my abdomen and I was extremely gassy. With this 15mg Rinvoq, the pain was relieved, however, I had still remained really gassy. This has gone on every since then.
In February, my GI doctor told me during an office visit that she was leaving to go to another hospital affiliation. I was devestated. She had been my GI doctor for years and now I would have to find another and start over, so I thought. So, back in 2017ish, I left my GI doctor from one hospital to change to another because of personal reasons. I had asked my primary doctor to refer me to another great one and she did. I really liked this doctor, however, it came to note that she was out of my network with my insurance so I had to be referred to another GI doctor, the one that left me recently. Now, many years later, this doctor that was out of my network decided to leave her practice where she was at and join forces with the doctor I most recently had. Long story short, when my doctor told me she was leaving me recently, she suggested I take on the doctor I had many years ago that is now in her practice. I did.
I had my first appointment with her a few months back and she remembered me! She suggested that I take the 45mg Rinvoq so that we can get this fistula to close back up. I loved the idea because this fistula has really been giving me a lot of problems. When I left her office, I felt confident that this thing would heal after receiving the 45mg. Rinvoq because I knew the 15mg Rinvoq helped me some. It took the insurance a while again to approve the 45mg medicine, so the doctor told me I could come every two weeks to her office and pick up some office samples of the 45mg Rinvoq they had.
During this time, I am noticing that the Rinvoq samples are not digesting properly because I can see it coming through my colostomy bag as I am draining it. This concerns me because I also don’t feel any better with the 45mg Rinvoq than I did with the 15mg Rinvoq and I fact, I believe I am getting worse! My symptoms/notices are – 1) the Rinvoq isn’t working the way it should because this is a time-released drug and by the time it gets where it should be on a normal person, it leaves my short gut before absorbing. 2) I have been having severe pain on the right side of my abdomen. 3) multiple UTI’s because I am seeing mucus/feces while urinating in the toilet and a lot of gas that also passes through my fistula now and 4) I am also feeling a lot of pressure underneath that I have to relieve with warm sitz baths. With these symptoms, I called my doctor to let her know what was going on. She suggested I keep on the Rinvoq for now because studies have shown that even though the medicine may not absorb completely, the patient still gets some benefits from taking the drug. I’m not sure if I agree with this totally or not. Also, she suggested doing a steroid taper of Prednisone to combat the flare that I am having. I agreed and believed she was on her way to ordering the taper. Believe it or not, it took me several phone calls, several emails and a week just to get her or anyone in her office to respond to me. I wasn’t a happy camper because I was in severe pain.
I’m going to leave off here because I have a whole other story to tell ya’ll about my annual trip to The Mayo Clinic. Oh boy!! I have a Zoom appointment on May 9th with my doctor from Mayo so I want to give ya’ll the full report on that when I have all the information. I do want to let ya’ll know that we have had some serious sicknesses and deaths in our family, including our dog Jasey, since I last posted and don’t by no means want anyone to think I am wanting to take presidence over what has happened. I love ya’ll deeply, you know who you are.
Chow for now,
Kelly