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Wednesday, July 21, 2010

Not Even the Snoopy Shirt Helped

I have a couple awesome shirts. You know, like the one with the condiments bottles that says "Relish today. Ketchup tomorrow." The Mighty Mouse shirt. The Wonder Woman shirt. And the Snoopy shirt. People also keep telling me that I'm so cute and look so young. Maybe it's time I stopped dressing like a 10-year-old. But I LIKE my awesome T-shirts! They make me happy. But today, not even the Snoopy shirt helped. I had my GI appointment. It was sad. GI Dr said "You are such a mystery" four times by my count... I'll confirm with my mom, who went with me.

Because my pouchitis is not going away even on Humira, he advises that I get Twitchy removed and have a permanent ileostomy. While that does not make me happy and thrilled, I have to agree with him. Even when I was pretty much asymptomatic from pouchitis in April and May and early June, my scopes still showed inflammation. That means that the pouchitis is simply not going away. So, if we did surgery to reattach me, I'd get even sicker - I'd feel like I had UC again. And I'd be married to the drugs, treatments, scopes, and doctors like a 19th century woman - stuck for the rest of my life with no hope of ever getting a divorce. ;) There is a (slim and absolutely not guaranteed) chance that even the arthritis might go away if Twitchy went the way of my colon, because it's possible that the inflammation in Twitchy is setting off the inflammation that's wreaking havoc on the rest of my body. There's no rush to take Twitchy out, which is good, because I'm STILL not close to being off steroids. If the pouchitis continues to get worse, we will up the Humira (do a few rounds of two shots, instead of just one) for a bit.

He felt my joints and thinks they're swollen. I think he's nuts. They are the least swollen they've been in months, yay! He did say that the type of arthritis associated with Crohn's disease and ulcerative colitis usually does not cause erosion. That means that it while it hurts a lot and causes a lot of inflammation, my body is NOT eating away at my joints, which is truly excellent to hear.

As far as my stomach pain... he thinks that I am indeed having transient obstructions - obstructions that go away on their own eventually. This is from scar tissue that formed from surgery. If/when the obstruction happens again, he told me I need to take it more seriously and go in to the ER to at least get fluids. He's concerned about doing damage to my kidneys because I'm chronically dehydrated. He said riding it out at home like I've been doing is not good. It gets dangerous really fast if I'm not able to drink much. There is really not much that can be done for an obstruction - they would just keep me hydrated and wait and hope it goes away. If it were to not go away after a few days, they could do surgery, but that would just cause more scar tissue that would cause more obstructions later. So hopefully this won't keep happening...

And finally, the stomach not emptying thing. It's called gastroparesis. This was one of the (many) times when he sighed and said I'm a mystery. Just a few weeks ago, I was dumping - stuff was moving through me so quickly that my pills were coming out unabsorbed! Now, nothing is leaving my stomach for hours. This does explain why I'm so nauseated. But it makes no sense that my stomach was working too fast, and now it's working too slowly. Gastroparesis usually comes on sort of gradually, not all of a sudden. He gave me some medicine to try to help with nausea and that is supposed to help my stomach to empty. I'm still hoping that this will resolve on its own.

Then... to top it off... I started feeling shaky and dizzy and sweaty and stuff this afternoon. I had been doing so well!! Bummer! So I took my blood sugar and called the endocrine doctor (I didn't say "I told you so," but, surprise -- my blood sugar was normal) . If I keep feeling bad, she advised me to go to the ER tonight, but I'm okay-ish, so I will wait it out. This has happened a million times and I've never died yet! ;) If I still feel bad in the morning, I will have to go see her. We are basically out of ideas for what causes these weird episodes. She strongly feels that it is not related to the adrenal stuff. I don't know what else it could be, but I understand that it's really not a straightforward situation at all.

I'm a little frustrated by everything today. I know I have a lot of health issues and that I'll probably have to deal with them to some extent or another for the rest of my life... it's just discouraging to be reminded of all that! I just have to be sad for a little while... and then remind myself of what I know is true. While I may be a mystery to the doctors, the God who made me knows exactly what's going on, He allowed it to happen, He's in control of this situation, and He will work it for His glory and to make me more like Him. Our family's been doing a Bible study together. Last week we talked about the attributes of God - what He's like. Sometimes, situations are just plain bad. There's simply nothing anyone can say to make it better that doesn't sound trite. But knowing that God is sovereign, knowing that He is merciful, knowing that He is all-powerful brings me comfort. I don't understand, and I my initial reaction to days like today is not always God-honoring... but I'm thankful that He doesn't change, that He is forgiving, and that His love for me is not fickle. It does not change based on how I act or don't act... or depending on what shirt I wear. ;)

Hannah ;)

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