Changes, With Gelatin and Yogurt.

posted in: Day In The Life, Fashion, Sicky 12
Homemade yogurt. Image: Wikipedia.
Homemade yogurt. Image: Wikipedia.

 

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. 

A Laundry List (or Two.)

posted in: Day In The Life, Luv, Sicky, Tips 10
Free label, letters by me. Oh, to have a full-time graphic designer on staff. Oh, to have a staff.
Free label, letters by me. Oh, to have a full-time graphic designer on staff. Or a staff!

I saw a woman wearing denim overalls today.

Though I would like to write about how every few years the public must endure Fashion’s attempts to make denim overalls cool (oh, how they try and fail!) and how this is just silly and I can’t believe we haven’t learned to ignore Fashion on this, I think that ought to wait till tomorrow. To go straight from talk of ambulances and surgeries to ill-fitting overalls is not nice. It’s like going from a popsicle to a steak. Jarring. Rude, in some cultures.

And so as I went about my day today, I tried to think of a good bridge. “I could write about what I’ve learned since getting sick,” I thought, and mentally wandered down that road. But on the way I came upon all the things that I feel more confused about, and things that I observed that didn’t necessarily teach me anything so much as simply surprised me.

So tonight, a few lists; tomorrow, overalls.

My Oprah Winfrey, “What I Know For Sure” List
– The saying, “What doesn’t kill you makes you stronger” is bizarre and largely untrue. More often, what doesn’t kill you leaves you weakened, compromised.
–  You can get used to anything.
– There is no time. You must do it now.
– Being in a hospital blows. Stay out if you can, but if you must go in, pack a bag. Take your phone charger, your sock monkey, your journal. Take your glasses (if you wear them), your laptop (if you use one) and anything else you would want if you have to be there for long. As bad as you feel, try, try, try to pack a bag from home to take with you. It will bring you great comfort when you wake up.
– Visiting people when they’re in the hospital is one of the kindest, nicest, most lovely things you can do for a person. I remember every last person who came to see me. Thank you. It meant everything, every time, bless your hearts forever and ever. (Rebecca, if you’re reading this, I’m looking at you right now especially. You too, Bilal.)

Curiosities
– I’ve seen myself from the inside out: I have handled my own intestines. I am kind of a badass.
– Very few people in the Eastern hemisphere get UC or Crohn’s. These are maladies of the industrialized West. One day we will know why and keep people from getting sick like this.
– Losing my hair really sucked. It came out in clumps in the shower. That was one of the worst times in terms of feeling attractive (or not.) The stoma was rough; in some ways, losing my hair was harder. A female thing?

Disappointments
– In a hospital in Tucson, AZ, in ’09 or ’10 (ER trip while visiting then-husband) I looked at my frail, perforated body and all the medicine bags hanging around my head and thought, “I will never, ever hate my body again or tell myself I should lose five pounds when I don’t need to.” But I still do that.
– You can’t go back. You can never be ten years old again, happy, healthy, running through the yard in bare feet.

Funny Things
– I have my very own semi-colon.

Timeline, Part 1.

posted in: Sicky 23
This slice of birthday cake is the image for this post IN DEFIANCE OF PAIN!
This slice of birthday cake is the image for this post IN DEFIANCE OF PAIN! (Ironic note: I can’t actually eat birthday cake. Frosting, maybe.)

For folks who might be new to PaperGirl and/or my intestinal odyssey, I thought it would be appropriate to offer a brief timeline of events. I write it down less out of a desire to, you know, write it down, than to inform those who without it might draw incorrect conclusions about the trajectory of my illness or fail to see the pretty extreme case it represents. Most people do not experience the trouble I had with all this. If you thought what has happened to/with/at me is what happens to anyone with UC, you would be (blessedly) wrong, even though there’s no good way to have this intestine-chewing chronic condition.

It’s remarkable to me how many people, upon learning that I have experience (!) with ulcerative colitis, will say, “Oh, dear. My [family member, kid, self] has had Crohn’s since 2006; I know just what you’re going through.” Too many people say this. [EDITOR’S NOTE: Oof, that came off wrong, I think. I meant that “too many people have these diseases,” not that too many people offer their empathy! Heavens!]

Warning: I’m not going to mince words, surgeries, or diagnoses. Again, in the interest of providing information for those who are perhaps facing a diagnosis, or for those who care to know more about a worst-case scenario, I’ll give you the straight dope on what’s happened to me up to the present day. It’s like I’m donating my body to science without having to die! Yet!

August 2008 – Over the course of several months, the weird symptoms I had experienced on and off for years grow grim: I am passing quantities of blood and what seem to be chunks of tissue. The month or so before I go to Mayo Clinic, I am using the toilet 30 times a day.

September 27th, 2008 – My wedding day. No symptoms. Blissfully happy.

October 20th – Mayo Clinic. Drive through the night. Doc takes one look at me and sends me to ER. I am put on heavy steroids and NPO (“nothing by mouth,” not even water, for fear one sip will burst my colon) for seven straight days; this does exactly nothing to my colon, which is “in shreds,” as one doctor put it. I am diagnosed with advanced ulcerative colitis.

October 15th-ish –  Surgeons tell me I have two options but really only one option, since the steroids are not working: J-pouch surgery. This is where they remove your entire large intestine and fashion a new plumbing system for you out of your small intestine, called a “j-pouch.” While this new plumbing heals inside your body cavity, you pass waste through a temporary ileostomy, or stoma. A piece of my small intestine will come out of my tummy and I’ll wear a bag, in other words. I “choose” the surgery. I ask when it will be. “Tomorrow,” says the surgeon, and I sign on the dotted line. It snows in Minnesota that night.

October 20th – Surgery. I wake up screaming. Insufficient anesthesia.

October 20th-November 20-something – Everything that can go wrong has gone wrong. I have abscesses, infections. There is a leak in the new plumbing. This is not typical. An NG tube is placed. A PICC line is placed. Many IR drains are placed. My insides are “bathed in pus,” as a later doctor would say. TPN (feeding tube.) Thirty-pound weight loss. Horror show, fun-house-sized syringes extract fluid and pus from my abdomen. Stoma separation occurs, which means my tummy pulls away from my stoma and there’s an infected moat around the thing. My then-husband and mother are living at the hospital, basically. I am on a Dilaudid pain pump and live in a world of stoned dread interspersed by visits from residents with bad news. Mom asks lead surgeon if I’ll die. “I don’t think so,” surgeon replies.

November ’08 – Home to Iowa. Full-time care needed. Mom flushes drains daily. Husband gives Heparin shots. Everyone is depressed.

November ’08 February? March ’09? – Skeletal. Sick. Why am I not getting better? Trips to Rochester, MN through ice and snow. I remember very little, then or now, of this time.

Spring ’09 – Return to Chicago. Ditch Mayo for Northwestern. Infectious Disease team finally cures the bacteria swimming in my gut. I begin to eat again. Stoma healed.

…and I actually have to pause here because this is when the really bad stuff happens and I’m a little exhausted from recounting this much, frankly.

Second half of timeline tomorrow, if you dare. Get some cake, maybe!