Sunday, January 10, 2016

Long time running...and I'm shot.

More I never updated this after my most recent surgery in October. My recovery was slow going. Getting opened up again and again takes its toll and I'm that much older, weaker and fatigued since it all began. 
I was in the hospital for a week. Pretty standard. Was on oxygen for a while because when they dig around in your abdomen it hurts to expand to full breathing. So you are suddenly a case for respiratory therapy and their visits. Oh and my white blood cell count dropped so everyone went crazy with masks and what not. It didn't help I was recovering on the oncology floor where something like that is very serious. My surgeon walked in and doubted it was an issue and he was right. The mask is a good look though. 
I had clumps of guts scarred together. A nice one that made a 4 months pregnant bulge when looking on my left is now gone! So bonus. Guts adhered to organs. Adhered to my abdominal wall. No wonder anything past liquids hurt to ingest. My guts couldn't move. They couldn't move the food. I'm lucky I didn't get an obstruction. Other than the adhesion removal that was planned and pretty much a mess, apparently I had some surprises in there. Who knew. What's left!? I had an ovarian cyst that was pretty substantial but hard to distinguish that pain when your entire abdominal cavity is in pain. I wouldn't have known if it burst. Keep in mind, those little egg makers are all that's left. They better keep it together. Well, then they realized, "oh, she has multiple small bowel tears" or what was coded as "perforated ulcers". So those needed to be closed. Which put a wedge in the whole, "Let's load you up with Seprafilm which will block scarring and more adhesions from forming". So yeah. And I'm proud to announce I'm pretty sure I have scar pain coming back. Pain in new places. So having mixed feelings about basically everything. Coming to terms with "constant" and "perpetual" issues, pain, treatment is not a fun concept. At all. Open abdominal surgery many times is horrible to recover from. 
Here is me I think 2 days post Op. Still in the hospital. Nice stapling through the belly button that was going to be questionable. 

FrankenBelly in full effect. My surgeon does a great job of cutting in the same spot. Like no kidding his cut is amazing. I still wish I had video of my guts out. So many opportunities. Told no every time. I wondered how this would all turn out. The last one healed well. This is today. 

It's not as flat as in the past but what can you expect when the same spot gets reopened again and again. And yes it's at an angle. And my belly button is there but  below the indentation at the very top of incision. It's very small. Amazed it survived. 
So now almost 3 months post Op I don't know anymore. Every time is supposed to be the big fix. I know this is how it goes with IBD and I've been dealing w it long enough to not be naive. But you come to a point where the fatigue is depressing. Being dehydrated limits you. The pain is just, well believe it or not, I'm so used to it that it's not even the biggest hinderance. I'll see my surgeon in a few days. Tell him about the new pain and he'll be ready to lose it. I'm his PITA patients bc my original surgery(colectomy and jpouch creation), was textbook. Apparently my pouch is gorgeous. As gorgeous as guts go. 
Most everything now is mental or emotional. IBD is like abuse you can never escape. This shadow of unknown and surprise. Can I grocery shop today? Can I drive or am I shot? It's like a crap shoot. Feeling like you have no control over what you can accomplish and plan has the most devastating impact. I'm hoping maybe this pain is recovery. My abdominal wall is clearly very weak. So maybe that's it. 
I have to remember I can't fall off the floor. And I'm better off than I have been for many years. But in the big picture isn't saying much. 
Many thanks for reading. Don't take your energy, health and capabilities for granted. XO

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