(Visual representation of my day.)
Today I spent the majority of the hours of 8 a.m. to 12 p.m. in a doctor's office, with a short break to drive from one office to another. I had my follow up with my GI first thing this morning and then my routine follow up with the rheumy after that. It was such a glorious way to spend a Tuesday.
I was anxious to see the GI as I knew we'd go over my biopsy results from the scope and the MRI findings. It was a typical Al appointment, full of information, issues but no definite answers. Here's the snapshot:
- The biopsies of the ulcerations in my pouch came back showing a lot of inflammation on each spot tested. Very IBDish. The biopsy taken from the top of my small bowel also showed some inflammation. The doctor's thought, "Is this Crohn's"
- The MRI showed no visible fistula. But it did show an area in my small bowel that is thickened or inflamed. Again, is this Crohn's. GI didn't have a chance to review the films with the radiologist, so they will do this tomorrow to see exactly where this area is. Is it right above the pouch or farther up. This may give us more info, but maybe not.
- The MRI also showed that I had an unusually large amount of stool in my pouch, which was also a problem during my scope even though I did the prep. So that leads to a new perplexing issue. Why is the stool not emptying all the way. When I empty I get stool out, but I never really feel like it's empty. So I now have an email into my surgeon to see what his thoughts are on this. Yeah.
- My iron levels are good now after four infusions, so we will wait and see before we do more.
- I'm having dehydration issues so I am to go get IV fluids if I feel I need them.
- I need to go to my GYNO again because my lady issues aren't any better and obviously need some more attention. My MRI again showed a "lot" of fibroids, whatever that means so maybe that's part of the problem. Fun times.
- I'm going to continue with the mesalmine enemas through my pouch as they seem to be helping the pain in my pouch. I will add the mesalmine pills to help with the inflammation in the small bowel. If I'm not feeling better by my appt on February 7 we will discuss next steps.
After I left the GI, a bit contemplative about all of the above, I made my way to the rheumy. I was actually glad I had my GI appt first so I could relay to him the info. We both believe that a lot of my joint/muscular pain is related to my IBD. His thought is that maybe it's time to start something a little more aggressive, one of the Anti-TNF drugs that are used to treat both IBD and rheumatalogic diseases -- something like Humira. I asked him to please call my GI to discuss a plan to go forward.
It's a bit scary to thing of going on one of these bigger drugs, but at the same time I've had a feeling this was the path I'd be heading down for sometime and at this point I just want to have some relief. This isn't an immediate thing, there is a lot that still needs to be discussed, reviewed, etc. So we shall see.
Today's appointments brought to the forefront again that my autoimmune issues will be a battle for the rest of my life. No answers will come easy or without consequences or new questions. Some days I'll be up and some days not, but I will keep on trucking because really I don't have another choice. It's hard and frustrating and sometimes seems so very overwhelming, but I can do it. I will do it.