So far, he is pleased that I have had no fevers, less nausea, and have continued with the lower dose of steroids. I'm pleased, too! ;) He told me I looked "somewhat better" than I did at the hospital. Thanks? ;)
I've been having some issues with Squirt for several weeks - he's sticking out more than he should, so it causes some problems. It sticks out enough that it's uncomfortable and harder to conceal. And Squirt catches on the edge of the flange on the bag, so the intestine gets raw and bloody. It's not nearly as extreme as my problems with the "old Squirt" - before surgery #2, he used to prolapse really badly - like 5 or 6 inches of intestine would stick out of my belly and I'd have to go lay down to push it back in. And as soon as I stood up, my guts would start falling out of my belly again. It was very, very uncomfortable and psychologically disturbing to have to literally push your guts back inside! All that to say that this is mild, comparatively. But if Squirt is here forever, it might as well be comfortable! Dr. Saturday told me that it could be fixed with a small procedure. He said we could possibly do it even in the office. I would like to get that done at some point soon (like before I lose my health insurance in July!).
Then, he said, "Let's get that tube out." More wonderful words I've never heard. The removal wasn't much trouble, except for the fact that his nurse was sort of ditzy and had NO idea what she was doing. She asked me what she was supposed to do and where the tube was stitched in. Um, I can't see that any more than I can lick my elbow! After she hemmed and hawed for a few minutes (while poking around with a pair of scissors and a tweezer), I asked her to go ask the doctor. She just kept asking ME what she was supposed to do, and I didn't feel comfortable with her messing around and pulling on stuff if she didn't know what she was doing! Dr. Saturday came back in and removed the tube. It had a huge bulb on the end of it, so I guess my fears of accidentally pulling it out were groundless! It definitely wasn't going anywhere. But it's out now and my happiness level increased.
Dr. Saturday wanted me to get labs done today to monitor my white count, mainly. He said he'd keep a close eye on me. If I develop further problems, I'll need more surgery to remove (ick... here come my least favorite two words) anal canal/bottom of J pouch. He thinks that the situation will declare itself in the next couple months. If I do well, then I'm home free - no more surgery! The lab was another adventure, involving multiple phlebotomists and sticks and much digging around to find veins. Phlebotomists of the world: if I tell you what kind of needle works and which vein works and you ignore my advice, you likely WILL NOT be able to get blood. Third time was the charm after finally getting the kind of needle that works on my tired veins. I left a grouchy patient, unimpressed with the level of competency the nurse and the lab people exhibited.
Next, we went to visit my friends who are still inpatient - please be in prayer for them. Hollye has been in for 3 weeks. A J poucher, she had a lot of pain and ended up having surgery - a HUGE HUGE incision - and Dr. Saturday was able to fix her scrunched up guts so that they will work better! She's also getting meds for the infection in her guts. She is working towards HOME and her 6 year old son in the next few days. I mentioned Patt before. She has been in the hospital for weeks and weeks - she had surgery in mid March, and yesterday she had to have ANOTHER big surgery. She has Crohn's disease, and we have a lot in common. She is very uncomfortable from surgery and fighting discouragement with all the setbacks she's encountered over the last several weeks. Please pray for encouragement and hope for Patt and Hollye!
I am still pretty miserable with pain, and my joints are flaring. I'm seeing Dr. Pain tomorrow, so hopefully he can figure something out so I can get some relief and be functional again.