I came home to quite a mess Friday evening. Raise your hand if you’re surprised. Anybody? No? It was so thoughtful of MC to save almost two weeks of dirty dishes for me but, being the snarky swamp creature that I am, I rejected his gift and made him scrub those pans and load the dishwasher himself. Also, it took all of my remaining strength, a loan from Thor and fifteen human sacrifices to make it up the stairs.
I made a half-assed attempt to fill my pill planner and instead of filling the four slots for one day to figure out what goes where, I opened all 28 holes and stared at them. Then I stared some more. Then I realized I didn’t have everything I needed in the bedroom anyhow, so I chucked it in the fucket bucket and decided it would be a better Saturday task. The only problem with this plan is that it’s now Saturday night, technically Sunday morning, and I’m still too derpy to focus. I’m taking them straight from the bottles like some kind of disorganized animal.
I did manage to get my pain medication divided out in a second planner so I don’t accidentally overdose. I’ve done it (overdosed by accident) before and I didn’t mind at all but the goal here is to manage pain, not to get as high as the ISS. For shame.
I had another laparotomy two weeks ago and said goodbye to another 70i’sh centimeters of colon/small intestine lost to the ghastly bowel munching disease. It turned out the reason I was so sick and hurt so bad was that I had more perforations. Bizarre. I don’t eat actual food anymore – nutritional slop is it. Those steroids we were so sure would fix everything? They turned my guts into wet paper towels that tear for no apparent reason while Crohn’s kept noshing away. So, they fixed that again. All of the holey places and the places that looked beyond saving were removed. The end-of-surgery-game decision was made that most of my ileum and colon should be bypassed until I heal from surgery and find a treatment that actually works for me.
I am now the reluctant owner of a loop ileostomy. It’s gnarly and I’m not even close to being okay with it. I know a few ostomates and I’ve even seen stomas. They don’t bother me at all, but to actually have one without having any idea that’s what would happen when I went into surgery? It’s different and a little bit of a shock. I’ll adjust to it, likely after it stops hurting so freakin’ much. I might even name it. For now, it’s Asshole #2.
The post op pain of this surgery was/is much worse than the one before it. The first few days were awful and only within the past five days or so, it’s finally to a level that I can tolerate if conditions are perfect (i.e. I’m sitting completely still). I dread having to change hardware and empty the bag because that whole area is unbelievably sore. I just have to grit my teeth, make plenty of weird sound effects and get it over with. I’m also quite sure I’m allergic to the adhesive so I’m going to have to do some research to find something that’s suitable for wimpy skin.
The long ride home was a character building experience. I’m not entirely sure how I’ll manage my normal schedule now with as difficult as it is to move around. I suppose I’ll find out.
I started some new drugs, to hopefully give my circulatory system a little boost, and I’ll be tapering off of steroids completely, minus low dose hydrocortisone which I’ll remain on indefinitely. In about four weeks, I will be starting a drug called Entyvio, which requires IV infusions every two weeks during the loading period, and then every other month after that. That’ll be the easy part. As far as Crohn’s poisons go, every 8 weeks is nothing. The difficult part will be sitting in the infusion clinic every single week for a MVI, iron, and B12 shots in addition to dialysis and follow-up appointments. If my health is my job, consider this overtime.
Do you think B.B. Crohn would have named this disease after himself if he knew how many people hate Crohn’s? It’s something I’ve often wondered. If I discover a brand new disease, I’m going to call it Harpy. That makes much more sense.