Thank you for all the prayers for the steroids - this week, I've tapered down, and I'm doing okay with it - none of my bad symptoms or weird episodes! Yay! I have felt so much more stable lately, and I really believe that my body's steroids are starting to "wake up" and get back in gear! We weren't sure if that would happen, so this is just so exciting and I praise God for the healing that's taking place in my body!
Twitchy is doing poorly again... I stopped the antibiotics on Sunday since I was feeling so sick, and since I've still been feeling sick, I haven't restarted the milder one. I probably should, as Twitchy is twitching and bleeding more, but if I can barely keep fluids down, I am not overly excited to pound down medicine I know will make me more nauseated.
I found out today that I will get my surgery date by Wednesday of next week. It's a slow process, but I am moving forward with having this surgery. To recap our Tuesday meeting with Dr. A: Dr. A walked in, sat down, stared into my eyes, and asked, "Hannah, what if this surgery does not make you feel better?"
Not the way I wanted to start our conversation.
I appreciate his honesty, though. He wanted me to understand that there's a chance that we do this big surgery, I go through a long and painful recovery, and the inflammation could return somewhere else in my GI system and surgery does not do a thing for my joint and muscle pain. Then, there's the surgery itself, which involves risks of significant bleeding, as the J pouch has grown into my pelvis and surrounding major blood vessels. There's a chance of getting a hernia, wound infections, bowel obstruction from scar tissue, blah blah blah, all the usual surgery risks. The bottom line, however, is that I, my parents, my GI doctor, and Dr. A all agree that the J pouch is not salvageable and that taking it out is the best choice at this point. We are not so much choosing a "curative" surgery as choosing a surgery that prevents things from getting worse and gives me the best chance at getting better.
With that understood, he detailed the surgery for me:
He will cut me open from below my belly button to my pelvis, remove as much scar tissue as possible, and put in Seprafilm, a mesh that reduces the chance of more scar tissue forming. This part of the surgery will at least temporarily relieve the pain I have from obstructions. There is always a chance that the scar tissue will grow back, but at this point, my symptoms are bad enough that I'm willing to take that risk. Plus, the mesh significantly decreases the risks of that happening.
Next, he will take out my J pouch. This is the most difficult and delicate part of the surgery, as the J pouch has (as it was supposed to do) grown into my pelvis and surrounding organs and blood vessels. Finally, he will determine what portion of my intestine leading from Squirt down to Twitchy is salvageable and what needs to go. He wants to preserve as much as possible, but does not want to leave in any intestine that could be inflamed and sick. I told him I'd prefer for him to err on the side of taking too much out... I want ALL the sick guts out of my body once and for all! ;)
**This next part made me giggle a lot and may be TMI for some of you, so feel free to skip the next two paragraphs**
The other thing we decided he will do is remove my anus. Leaving it in gives me a chance to try for another J pouch. But for several reasons, I told him to take it out. One, another J pouch would probably be plagued with pouchitis like Twitchy is. Two, that tissue down there is probably inflamed and is not worth saving. Since the goal of this surgery is to remove everything that's sick and inflamed, he agrees that this gives me the best shot at getting rid of the systemic inflammation that plagues my whole body. So, I will no longer have an anus - I will just have a scar. This is an condition referred to as "Barbie Butt" (and no, I did NOT make that up...). You know, she has a rear end, but it's non-functional. Anyways, due to my immaturity, I could not keep a straight face at all the whole time he discussed this part of surgery.
Finally, Squirt will get a facelift/tummy tuck as Dr. A will make my permanent ileostomy. Since I will most likely be living with Squirt for the rest of my life, I was not shy about giving Dr. A very specific parameters for how I expect the made-over Squirt to look/function. He should be round (he's kinda infinity-sign shaped right now), protrude about an inch, but no more, the hole should be exactly in the middle, and most of all, he should NOT prolapse. These specifications will make it much easier to care for Squirt and the skin around him. Dr. A assured me that he would do his best. There is still a chance that I will be plagued with prolapsing, but hopefully not...
After surgery, I will be in the hospital for about a week, give or take a few days. He said it's possible I may have a tough time initially and need to stay inpatient a little longer because of my steroid dependence, but with Endocrinology on board, I hope and pray that everything will go smoothly. After that, he told me that I will have four weeks of "convalescence." I asked him what that looked like, and rather wished I hadn't. He painted a rather bleak picture. It involves me going up and down stairs a maximum of twice daily, with my activities being limited to watching movies, surfing the internet, and reading. Dearest Semi Colon readers... I will need enlist everyone's help to come up with ideas to keep me entertained... I'm already bored and antsy just thinking about doing that for four weeks!!! He also told me to not enroll in classes this fall, but to focus on recovery instead. This makes me quite sad.
This will be a long recovery (and I've heard that the bottom-hole-ectomy is quite exquisitely painful for a few months afterwards) and I am, quite honestly, not looking forward to it. BUT, I hope and believe that this surgery will get rid of the inflammation that is setting off the pain throughout my body. I believe that this is the step I need to take so that I can get healthy and get back to life! I'm excited to see what the Twitchy-ectomy will do for me. ;) Most importantly, however, regardless the outcome, I know that God will be glorified through this surgery, just as He was with my first surgery. Please pray that I will keep my eyes fixed on Him!