Pancreatitis is kicking my ass. I feel like right now I’m in the longest endurance race of my life. I’ve been missing from the blog since August 2nd. A lot has happened since then and almost none of it good.
What’s Not Cooking?
So how’s my health? Not so good. In brief:
The Not-So-Fun Vacation
- On the way up to Oregon I was extremely nauseous, burping and trying to throw up while climbing the mountains. During the descent I was fine.
- I had a few days of nice vacation and then I started feeling an extreme pain in my upper abdomen. I thought I was partially blocked again and dealt with it like I usually do. Normally I feel fine after I’ve gotten whatever was blocked going again. But this wasn’t the case. The pressure and pain increased to almost unbearable levels. There were tears, groans, rocking back and forth, and discussions on whether or not I needed to be rushed to the ER.
- Through e-mail and phone conversations while in Oregon, my ostomy nurse believed I have a narrowing of the intestine and suggested I make an appointment with my surgeon.
- We cut our vacation a little short because of my health. Once again, on the ascent I was nauseous but the descent was fine.
- I started not eating that much. If I could eat nothing, I would, but eating is sort of necessary so I force myself to. Sourdough toast, scrambled eggs on some days (but not everyday), soup, juicing drinks (I’m avoiding red drinks just in case-I don’t want beet juice to be mistaken for bleeding), and nutritional drinks like Ensure to make up for the huge calorie deficit.
- Monday August 15th I had my appointment with my surgeon. He was pretty sure that the problem was with the pancreas and sent me off to get labs. By the time I got home the labs were back. The lipase test showed my levels were at 2,060 (the acceptable range is 0 to 95). He called me and said just go to the ER and with levels that high I needed to be hospitalized as well for bowel rest and pain control.
- I was hospitalized Monday through Wednesday for severe acute pancreatitis. They released me after I got some solids in me without throwing up.
- I was not given a diet to follow or any advice at all, only that I should avoid fat. I started adding food (I still wasn’t eating that much). By Saturday and Sunday, my pancreatitis pain started to increase again.
- Monday August 22nd I had my follow up appointment with a primary care doctor. He ordered more blood work and sent me off to infusion to get IV fluids (I was extremely dehydrated). When I left the hospital, my levels were 523. Monday they were 575. The doctor told me it would be best if I went to an all-liquid diet and the reason my levels had gone up was because I had eaten.
- I tried clear liquids for two days and got sick of all the sweet stuff-the only savory liquid was chicken bullion. A phone appointment with my surgeon made me decide to start adding steamed veggies (he was afraid of me loosing more weight). I tried steamed potatoes and spinach, which I had a hard time digesting.
My Pancreatitis Diet
- Now I eat cream of wheat at breakfast, made with water, extra salt, and a drizzle of maple syrup. Mid morning I have a Popsicle. Lunch is a soup mixed in my Vitamix containing chicken broth and a steamed veggie (I’ve tried potato, acorn squash, and cauliflower). Mid afternoon is another Popsicle. Dinner is soup again. And around 8 at night I have sherbet ice cream.
- I’m 104 now and most of the time I’m extremely dehydrated. I got IV fluids again on Friday-my heart was racing so fast the machine couldn’t read it. It was kind of scary. Getting up sucks. I get dizzy, tingly, and have to gasp for breath. Lying down also hurts sometimes too because my bones are protruding more than they usually do. No padding at all.
There is Some Good News
The good news is that the surgeon thinks it’s safe to do the second surgery. It’s a super fast and easy one. They close the holes in my stoma, pop that part of the intestine back into me, and sew me up. The surgery is Tuesday, August 30th with an arrival time of 8:30.
This is the moment where I’ve decided to share a picture of me with my ostomy bag. Just because I’m getting rid of it now, doesn’t mean it isn’t in my future. I need to love my body with or without it and accept what I cannot change.
Oh the Irony
I’m a food blogger scared of food
I’m scared of food right now. This unfortunate fear has occurred often in my struggles with ulcerative colitis and now again with pancreatitis. It’s one of the main reasons I’m a food blogger. When I’m force-feeding myself even though I know it will hurt, when I try my hardest to keep from dropping weight drastically, I want to remember my love of food.
I’ve always loved food. I’m a foodie. But ulcerative colitis forever changed my relationship to it. Food is a pleasure, a privilege, an art, and an expression of love. But it is also necessary. And when eating causes excruciating pain, everything falls apart, even the necessary part. You don’t want to eat. You don’t want to experience that pain again and when you look at food it is hard to remember your love of it. Blogging helps me remember.
I don’t have ulcerative colitis anymore. But I’m learning that there are still problems, and being afraid of food because of pain is still one of them. I’m making a list of things I want to eat once I’m able to again. There is not one sweet thing on it so far.
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