Wednesday night was incredibly rough and almost entirely sleepless. We spent until yesterday afternoon trying to get the pain back under control. After changing meds around and giving them some time to work, I started feeling much better.
GI Dr's nurse (who is awesome!) came over from clinic to visit me and bring me my Superwoman shots - it was fun to see her! Gooo Humira - die, inflammation, die! ;)
Dr. A came by, and we had a rather epic conversation, so get ready. He told me that, although they haven't been able to see anything on tests, based on my history and symptoms, I am definitely having obstructions due to scar tissue from surgery. Surgery to "fix" scar tissue adhesions is not very successful, but because of the frequency and intensity of my symptoms, it's time to try anyways.
We also discussed Twitchy's future. Dr. A is open to doing the takedown surgery (connecting me to Twitchy), but I'm just not willing to have a surgery that will probably make me sicker. I would have to be treated for pouchitis for the rest of my life. I would be choosing to have a medical lifestyle full of scopes and meds and doctors. The reason I had surgery in the first place was to try to get healthy and get away from doctors and tests and treatments. At this point, there's NO guarantee that taking out Twitchy would help my arthritis and other problems, but it's almost for sure that keeping him IS going to continue to make me sicker.
Dr. A agreed that I've suffered enough and that taking the J pouch out is the best option. Unfortunately, surgery to take out the J pouch is considered very radical and massive, as well as being technically difficult. It's very rare for a J pouch to "fail" and need to be taken out (less than 5%). Of those 5%, nearly every single person is someone who's been "using" their J pouch for a while, so they don't have an ileostomy. So I'm getting a very rare surgery (J pouch removal), plus my intestinal anatomy is quite different from nearly everyone who has had this rare surgery. Go Hannah!
The plan would be to combine the J pouch removal (I'm gonna call it a "Twitchy-ectomy") with surgery to fix the scar tissue adhesions. To do the best job possible of freeing up my intestines, they can't do this surgery laparoscopically. They'll have to really cut me open, boo. Anyways, they will cut me open, get rid of as much scar tissue as possible, and carefully remove Twitchy. Dr. A will create a permanent ileostomy (Squirt and Hannah, together forever), then put a special mesh in my abdomen that is supposed to help prevent more scar tissue from forming. We don't have a date for surgery - and it doesn't need to happen this week or anything - but I will have it done, Lord willing, in the near future. Dr. A wants me to take this recovery more seriously - I'm supposed to spend 4-6 weeks convalescing - no walking a mile to school three days after hospital discharge like last time. ;(
Rheumatology also came by to talk to me. We are extremely limited in what medicines I can have to treat the joint pain and inflammation. There's talk of adding in methotrexate, which works really well in combination with Humira. Only downside is that it would take 6-8 weeks to kick in, which is a really long time to wait if you can't sleep because you're hurting so much. Hoping they can come up with an "in the meantime" plan that does NOT involve more steroids!
My stomach is doing better - I've been having a little trouble with it today, but overall it's been a lot better since I've been here (go figure) and I've been eating again! Unfortunately, I'm still having a lot of joint and muscle pain, despite all the drugs, and Twitchy is not doing well at all. Hopefully the antibiotics plus the Humira will kick in! I'm kinda just stuck here until we can get my pain under better control.
Thank you all for all your prayers and support! Please continue to pray for strength and perseverance and wisdom! I'm struggling a little with discouragement. Today I stated thinking, "I'm just so ready for this trial to be over and to get on with my life." But really... I know that "getting on with my life" is probably NOT what brings God the most glory. His power is perfected in weakness (II Corinthians 12:9-10). When I am broken and dependent on Him, His love and grace shine through so much clearer. Pray that my attitude in all this will bring honor to God!