Yesterday was my GI appointment. It was LOOOONG, therefore, so is this post. Sorry. ;) We were there for two and a half hours - most of it with my doctor!
GI Dr. believes I have a couple choices, based on the fact that my biopsies are definitely pouchitis, NOT Crohn's or "backwash ileitis" or "IPS:"
1. Continue the antibiotics and/or try Remicade again for the pouch/joints - problem is, this isn't keeping stuff under good control right now, and I "failed" Remicade, so that's not a good option.
2. Try surgery #2 so we can treat Twitchy with some oral steroid type drugs - problem is, I will most likely get much sicker if they reattach the sick J pouch to the rest of my digestive system. Also, they REALLY don't want to do surgery on me until I can get off steroids. Your body cannot heal well while you're on steroids, in addition to their immune-suppressive effects.
3. Take out the J pouch entirely - he is unwilling to consider this until we've exhausted options 1 and 2, as it's considered a disfiguring surgery because it would leave me with a permanent ileostomy.
I am not super thrilled with any of these choices. I feel like the antibiotics aren't working great. Remicade isn't a good option for a bunch of reasons. I really don't want to have a surgery that will probably cause my health to deteriorate even more, just so we can TRY some drugs that may or may not work (since Twitchy is not attached to the rest of my digestive system, meds I take by mouth have a very limited effect on him. The theory is that if I were "reattached," perhaps the drugs would work better). Finally, I would prefer to not have a permanent ileostomy.
BUT - I would much rather have a permanent ileostomy than be this sick! And I really don't want to keep trying meds until I'm in an emergency situation for surgery #2, do surgery #2, get sicker, try more meds, then be in an emergency situation to remove Twitchy and have a permanent ileostomy. I don't want to keep doing this to my body just because my doctor doesn't want to ruin my quality of life by making Squirt and I permanent "life partners."
He doesn't know what's going on with my almost passing out/high heart rate/shakiness stuff. He agrees with Endo Dr. that my adrenal glands should be way more than adequately supported by the high dose 'roids plus daily Florinef. Also kinda at a loss for why my joints are so weak and stiff despite the steroids. They should be feeling fantastic. Alas. Tomorrow I see Endo Dr, so hopefully he will have some ideas.
So the plan: antibiotics every day (instead of every other day), keep up the meds to help with the cramping/persistalsing in Twitchy, labs, biopsies, and tests of upper GI stuff later this month (things are not working quite right - I'm losing weight, nauseated, not hungry, having tummy pain, and alternating between blockages and not absorbing stuff). He apologized, but wants to do more scopes to check this stuff out. I told him that at this point, I'm goin' for the world record! He told me I've had more scopes than most of his fellows have performed. ;) He also apologized for not putting me all the way out during my last scope (I TOLD him I was still awake...) and said that from now on, I will get anesthesia, not just conscious sedation. I think I've been sedated so many times that the medicines no longer really work on me! Haha!
I was also informed that if I get dizzy again, I'm supposed to call him to be admitted to the hospital.
Last night, I had another blockage, my joints were pretty bad, and I was very shaky. I didn't sleep much. This morning, I was a little shaky and lightheaded, so I called GI. My labs from yesterday (such quick turnaround!) are ALL normal! That's good, but very confusing. So he wanted me to come in and decide if I should be admitted or not. I didn't feel like driving, so my dad was gonna come get me. However, after about 45 minutes, I started feeling less shaky and more conscious, so GI Dr. and I decided to hold off. I drank a bunch of gatorade and was able to pull it together for work. ;) I think that the Florinef (med to help me absorb water and salts) is kicking in - I can tell that I'm actually absorbing what I'm drinking, which makes a huge difference in my ability to bounce back from these weird episodes. So praise God for that! Both yesterday and today, I've been shaky and dizzy, but my body has been able to use what I drink (which was NOT happening for the past few weeks), and I've avoided getting an IV!!
GI Dr. told me today that he is going to present my case and my biopsies to several surgeons and doctors next Thursday. So he'll let me know if they come up with any new brilliant plans. Hopefully all those great minds can come up with some ideas. Twitchy is getting rather uncomfy again, and the arthritis is (they believe) related to the pouchitis. This is probably the most inflamed my joints have ever been, I think - although I've had greater stiffness before, more joints are involved than usual (ALL of them! Like, did you know you have joints in your feet?), and they are very weak and hurting. Weird. Also, today, my muscles started hurting, too - I feel like someone beat me up. ;( Even on pain meds, I can't sleep well (although I'm sure the steroids also complicate the sleep issues), between Twitchy's antics and my joints.
I know this sounds like a whiny post... I honestly don't mean it to sound like that at all. Right now, I'm very tired and don't feel well. But spiritually, I'm truly doing great. I was a little grouchy after yesterday's appointment, because I never enjoy hearing, "You're real sick, and we have no idea why. If you stay this way, you need to go to the hospital." That conversation, especially when both your parents and your doctor are staring at you, is no fun. It makes me feel like I'm in an intervention or in big trouble and they're discussing my punishment or something. Ick.
But God is constantly reminding me of His faithfulness - over and over each day! I can see so clearly how He's using this to make me trust in Him alone.
"I've dropped anchor in Your promises, and I am holding on,
'Cause You are faithful, You are faithful.
I will proclaim it to the world, I will declare it to my heart,
I'll sing it when the sun is shining, I will scream it in the dark,
You are faithful! You are faithful!
When You give and when You take away,
Even then, still Your name is faithful,
And with everything inside of me,
I am choosing to believe You're faithful!"
Please also continue to remember Devon in your prayers! She is in a lot of pain and feels pretty worn down on a lot of levels. Also Lisa! She's very sore from surgery, much more than after her first surgery, and her hubby has the stomach flu, so he's staying away, so she's bored, hurting and lonely - NOT a fun combo! :( :( Pray for a quick recovery and encouragement! You can do it, Lisa!! ;)
Thanks for all your prayers and support!