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.
Gary
Although I have the digestive constitution of an ox, ulcerative colitis lives at our house too. I’m so thankful for the doctors who guide us on diet, and for the brave daughter who does what she needs to do and lives her life facing challenges that no one ever sees. Thanks for this perspective. Love, G
Jean. Isiminger
Good Luck, Mary! I feel that way about the word disabled. I told my friend that I’m not disabled I can still do everything (badly) except run. I’m “handicrapped”. Yes, I spelled it right. She didn’t see the difference because she’s not disabled or handicrapped. It’s just what I am!
Jean
Kelly
Mary … I hope whatever diet plan you decide to go with, I pray that it’s your “final decision” (think, Who Wants to Be a Millionaire show, lol) … not final as in death, but final as in that it actually makes you healthy and whole once again so that you will never, ever, need an ostomy bag outside of your body ever again! I wish you the very best of luck in your “back to health” endeavor … I’ll definitely be rooting for you the whole way and cheering you on! If you have not already done so, I highly encourage you to watch the documentary movie “Fat, Sick and Nearly Dead” … with doctors and conventional medicine unable to help Joe Cross, he turned to a plant-based diet by juicing and overcame his debilitating illness and regained back his health … and his LIFE. I bet THIS is the way for you too. It’s worth a try anyway, right? Hugs! 🙂
Hedda
You can do anything for 90 days! We are all rooting for you – stay strong!
Karen johnson
Yay yogurt!!!!! Congratulations in finding an alternative to the dreaded procedure.
Angie
Good luck, Mary! I make my own yogurt on occasion and it’s very delicious. It only uses natural bacteria and the starter is a pure yogurt with no gelatin, fillers, etc….if you have to go that pure! http://www.overthekitchencounter.com/over_the_kitchen_counter_/2009/04/vanilla-yogurt.html
Fingers crossed for you, my dear, and I wish you the best!
Angie
carol
mary, mary, mary…i will send positive, the MOST POSITIVE thoughts. would that this should help, perhaps even be the answer…POSITIVE THOUGHTS coming your way.
carol
p.s. love that pic of Elaine Gotttschall…she looks like someone who you wanna sit down with over a cup of coffee. … kind of Kate Hepburn-esque
Jolene shindler
Mary,
I’ve known your story for sometime now. An unusual thing happened while watching episode 2006 Love of Quilting. I observer something that happens to me just before a UC flair up. I noticed your knuckles were very red in this episode. I know for myself that when this to happens to my hands, I better get my diet back on track! I write down what i ate for snackslunch/dinner the day before. Usually it’s some type of wheat based or high gluten food (pizza and broccoli are my triggers). When symptoms start to rear it’s ugly head, I take probiotics that I keep in the fridge and something natural called GI revive. I take 7 capsular for 7 days and things quickly turn around for me.
I hope you can find a good routine that works for you. You never know what peoples people share may work for you too! Just wanted to share what has worked for me in the past.
Always keeping you in my prayers, so thankful for your smiling face on Quilty and Love of Quilting ! You’re such a character Mary. You make me laugh every episode I watch! Being stuck in a wheelchair now, you keep me smiling and keep me from falling into depression too. The wheelchair is a new thing and it has taken lots of courage to accept using it in public without becoming embarrassed or stared at because I look so young and put together. (48 years young)
So from the bottom of my Heart, Thank You for pushing through your crummy days because you make a difference in my life. Take care of you! (my favorite line from the movie Pretty Woman!)
~jolene
admin
Jolene, wow. The knuckle thing — that’s amazing! I need to read up on that… Your comment is really lovely. Everyone gives such incredible stories and I can’t reply to them all, but every one inspires me and I marvel away. Thank you. You can do it, Jolene. I mean, Loretta Lynn sang a song about you. You’re better off than the rest of us!! xoxo, Mary
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