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Wednesday, September 19, 2012

Crohn's?

So... today was an interesting visit to Dr. Saturday!

I went to see him for the procedure on the weird wound-thingy by Squirt.

Misinformation called me back and put me in a room. She asked, "Is this just a follow-up appointment?" I told her I was here for the biopsy/removal of the wound issue. She hadn't known I was here for a procedure, so she left to go get some equipment to set up the room. She returned with vials and needles and sheets and stuff like that. Then she said, "There's three patients ahead of you, then Dr. Saturday will be in. Just take everything off and lay on the table."

I asked how long it would be. She told me, "Well, awhile. Like I said, there's three patients in front of you."
Since it honestly takes me about 15 seconds to take off my ostomy bag, I asked if I could wait to take my bag off. I just didn't see a need to strip down and lay on a table for 35 minutes with Squirt squirting everywhere! This is a new office, and I had visions of the brand new exam table, nice clean white tile floor and freshly painted light blue walls splattered with Squirt "effluent." I'm not really sure why she thought that would be a good idea! Thankfully, she agreed to let me wait.

Dr. Saturday came in with a huge grin. "Guess what?"

He recently went to a conference about IBD (Inflammatory Bowel Disease). One of the speakers was a dermatologist. They talked about the types of skin problems IBD patients can have. There's the Pyoderma gangrenosum (Google image at your own risk). Then there are these other weird skin and wound ulcers and issues that apparently look just like what I have by Squirt and had with my surgical wound from my surgery last summer (you know, the wound that took 9 months of intensive wound care with multiple treatment modalities to heal...). These ulcers are associated with Crohn's disease. Evidently, the worst thing you can do for these ulcers is surgery - it makes them worse or spread or something. The appropriate treatment is injection with steroids. He was very pleased to learn this information.

Thankfully, the ulcer thing has been looking BETTER! And when I pulled off my bag today, it looked even better than it had a few days ago! It looked so good that Dr. Saturday decided that he didn't even need to do anything to it right now! He said he was a little disappointed, because he had this new great plan for what to do with me, but he didn't get to carry it out. ;) If the wound does get worse again, though, he'll inject it with steroids.

Dr. Saturday told me that he thinks that I actually have Crohn's, not ulcerative colitis. Ya know, all the doctors have gone back and forth on the Crohn's vs. UC thing with me, but it was still a bit of a shock to hear. Dr. Saturday said that I've never really gotten better, even without my colon. I also have so many "extra-intestinal" manifestations, and all these weird issues that are more associated with Crohn's than colitis (abscesses, fistulas, these ulcers...). Anyways, he thinks it all adds up to Crohn's.

He thinks that the ulcer has improved over the past few weeks since I've been on a higher dose of steroids. I was supposed to start tapering back down to my normal dose of steroids over the next several weeks. Dr. Saturday told me that he wants me to taper much more slowly than JP Dr asked. He told me to call JP Dr and tell her that he now thinks I have Crohn's, and ask if it's okay if I taper more slowly in order to help the Crohn's wound/ulcer issue heal.

I called her, and she said, "I'M fine with you tapering more slowly, but it's your endocrine doctor who's won't like that." Endo Doc wants me to be on 1/3 of my current steroid dosage, and she is really not a fan of using steroids for my autoimmune issues. I think sometimes she forgets that there are times when steroids are the best choice for treating chronic autoimmune inflammatory conditions. And we've also proven that my body doesn't follow the normal rules, and so sometimes, for whatever reason, my body needs a hefty dose of steroids just to function normally.

Speaking of functioning... I have been, like, actually functioning again! After a few weeks of sleeping close to around the clock, I'm starting to have more energy and stamina, less shaking and dizziness... it's fantastic! I am still having a lot of trouble over the weekends from the Methotrexate shots, but otherwise, I'm doing a lot better overall! In fact, Tuesday was the best day I've had since before being in the hospital in May! I can feel my body starting to regain some strength. Praise God! I am SO thankful! I am starting to heal and finally feel like myself again.

Hannah ;)

1 comment:

  1. Awesome! It's great when things make a little more sense :) Does this mean that there will be more treatment options, like biologics that are specifically for Crohn's? I hope this will give you more answers. Glad that you are feeling a little better.

    -Elizabeth

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