I spent the majority of the day in the hospital yesterday, dagnabbit.
Sometimes it seems that I get sick or have something go wrong and when I recover, it’s time to set my stopwatch and wait for the 00:00 to hit and then it’s back to the nurses and doctors. My 00:00 came the other night and yesterday, I could wait no longer to take my watch to the ER.
Starting last week taping TV, I felt this a strange, new pain. (It’s always exciting to experience a symptom for the first time! It’s like making a new friend.) There was intense pain and a strange gripping, clenching, internal dripping (??) feeling around my old ostomy site. I’ve got a fabulous scar to the right of my bellybutton and all around it, tenderness and a disturbing hardness had arrived. And did I detect streaks? Under the skin? Oh, dear. Oh, boy. It was worse when I bent over to pick up my house keys, which happens all the time for some reason.
My new friend Elle (a quilter, no surprise) told me when I got to DC that if I ever needed medical care, to call her immediately. “I know from ER trips,” she said, having taken various members of her family on a regular basis. “I’ll be your advocate. I know about that, too.”
I really, really hate calling in favors, but I did. Elle and baby Miles took me to Sibley and I’m happy to say I received excellent care. Surgeons poked at me, internal medicine doctors prodded me, CT scans were ordered, and pain medicine was blessedly dispensed. I barfed a lot, too. We were there for eight hours and Miles was an angel. He also was useful: when Elle would go out of my room to ask for something, the staff was like, “Oh!! Adorable baby!! Yes, how can we help you? Adorable baby!!”
Results were inconclusive. The surgeon thinks it’s sutures working themselves out, maybe adhesions shifting around. But I got bonus diagnoses: I have a small gallstone and a 2” ovarian cyst on my right side. Wow! And I just came in for what I thought was a piece of my intestine ready to quit on me. I told my surgeon about my lipoma, too. He said it was no big deal and laughed when I told him how I found it.
All you have to do is get out of bed in the morning. Things will happen to you. Experiences will arrive. What will happen today? Time to wake up.
I have a mission in life: I am going to save my j-pouch.
If you don’t know what a j-pouch is, that’s good, because it means you’ve never been personally introduced. If you do know what a j-pouch (or “ileal-anal” pouch) is, you and I could sit down and talk about a lot, I’ll bet.
Either way, if you’re new around here you might want to read Part I and Part II of my health history timeline because you’ll want some background for tonight’s post. Warning: It’s not a fun tale and I wouldn’t recommend eating while reading, so put down the snacks.
If you don’t have time to go through all that, here’s what you should know:
1) I was/am a gimp** because of Ulcerative Colitis (UC); 2) I was treated for UC but made more gimpy in some ways because of not-so-successful surgeries, each with new and exciting complications; 3) Today I am less gimpy than I was but still a gimp and now have a decision to make: Do I opt for a permanent ostomy bag or continue living with my dubiously successful j-pouch and its attendant woe?
While an ostomy bag isn’t the end of the world — I know firsthand, having had one for a total of three years — it does blow. More than what I’m dealing with now? Hard to say. But I’m not giving up my internal ileal pouch without a fight. I’m going to do whatever it takes to make my ruined gutscape look and feel like a damn prom queen. Think sunshine on a field of daisies. Think kittens frolicking in strawberry patches. Think pretty — the opposite of what I got.
* * *
Back in the 1960’s, a woman named Elaine Gottschall had a young daughter with Ulcerative Colitis.
Elaine and her husband lived in New York City. They went to specialist after specialist and their poor kid went on massive steroids and other drugs only to face surgery, anyway. Then the Gottschalls had a stroke of luck. They met a doctor who stared down the hopeless mother and asked:
“What have you been feeding this child?” None of the 15 docs they tried had asked that one.
“Um, food?” was the answer he got.
The doctor put little Judy on a very strict diet: zero starch, zero sugar, and lots of homemade yogurt. Within ten days, surgery was not a pressing concern. Within a year, Judy was growing like a weed, no longer bleeding, no longer living in the bathroom. The kid was better. No, no: She was a lot better.
Elaine was hoppin’ mad that her little girl had been through so much, how she had narrowly escaped being super sick and having an ostomy for the rest of her life, or, you know, dying. She decided to check out how it was that food could cure digestive maladies — and why she hadn’t known that till it was almost too late.
Elaine went to the library. She read many books. Elaine came of age during the Depression, so she never had the opportunity to go to college. She decided to go. At 47, she went to college to find out more about why the diet helped her kid and how it could help other people, too. She got degrees in biology, nutritional biochemistry, and cellular biology. Then she wrote a book. Then she wrote another book. Twenty years and a zillion testimonials later, Gotschall’s work is still in print and many lives have been saved, many more vastly improved, all through the science of nutrition as it applies to sorry souls who are smote with intestinal disorders.
Look, Elaine Gottschall was just a person. But she helped a lot of people.
Along with some other treatments — and under the care of my physicians — I’ve begun Gottschall’s Specific Carbohydrate Diet (SCD), which is designed to starve out harmful (to me) bacteria in the gut and repopulate it with healthy bacteria. It’s a rebalancing act, a total, very much “natural” intestinal renovation. “Gut remodel” would be an appropriate, if too cute, way to put it.
Above all, it’s a major change. “Lifestyle modification” begins to describe it. I can’t use the wooden spoons I use for Yuri’s food because of cross-contamination. “Puree” is a word I have to get comfortable with for awhile. I have to eat an insanely limited number of foods the first phase of the thing, though after the first period I can start to branch out. If I thought about how I can never have chocolate again, ever, I would give up this second.
Maybe not, though.
Because it’s funny how any food becomes far less delicious-looking when it makes you cry a couple hours after you eat it.
Ninety days. Then we’ll see.
**Yeah, I can say “gimp.” We can call ourselves that, but if you’re not a gimp, you can’t call us that.
