Holidays -- a gut reaction to a tight spot (or stricture)

Frosted sugar cookies, pumpkin pie, cheese balls, pecan pie, hand-dipped chocolates, Reeses peanut butter trees, cranberries, hot cocoa, caramel popcorn, ANY popcorn -- just some holiday yummies ubiquitous this time of year.

With all the delicacies that come with the holidays, I’ve found myself turning down crisp, green salad, carrot sticks, lettuce for sandwiches, rich chocolates, cookies that smell awfully good, peppermint ice cream and chocolate cake, creamy pseudo-salads, gravy. . . You get the picture.

I frequently hear the question, “You don’t like ___________?” I respond, “I do like _____________, but it doesn’t like me.”

Ahh, one of life’s plentiful paradoxes – unrequited love! And I, like so many others whose affection is not reciprocated, must find something else to fill my need. Something with limited fat and fiber, or with the kind of fat and fiber to which I don't have a gut reaction. :-)

 You see, I still have a ticking time bomb stuck in my gut – an indigestible, plastic and metal camera-in-a-capsule that I swallowed to take photos of my small intestine’s insides. Bowel obstructions were becoming too frequent, and my gastroenterologist said this would give him the best information to determine how best to tackle the problem. Problem is, though, my jejunum (the middle, longest part of the small intestine) is too narrow from inflammation and scarring at some point, to let the capsule pass. So there it sits, awaiting the January 8 retrieval attempt date. Always threatening to block the stricture that, so far, still allows stuff to squeeze tightly through to it’s (and my) final end. 

Previously, in Crohn's Disease Chronicles . . . 

So, here are some yummy things I CAN eat while you’re enjoying whole apples, oranges, carrot sticks and pecan pie:

• ·      Yogurt with peaches, bananas, or honey
• ·      Chocolate, vanilla and peanut butter frozen yogurt, with marshmallow, chocolate and peanut butter topping, respectively
• ·      Low-fat banana cream pie
•     Candy Canes
• ·      Bananas
• ·      Peaches
• ·      String cheese
• ·      Jell-O loaded with peeled, shredded apple
• ·      Fruit and vegetable smoothies (Dave gave me Ninja blender for Christmas)
• ·      Fat-free chocolate pudding with fat-free cool whip
• ·      Low-fat chocolate cookies with vanilla or peppermint or peanut butter chips
• ·      Low-fat banana chocolate chip or pumpkin chocolate chip cookies or muffins
• ·      Banana or pumpkin bread
• ·      Better-than-sex cake (the way I make it, anyway)
• ·      Oatmeal with cinnamon, brown sugar and vanilla soy milk
• ·      Gingerbread cookies (thoroughly chewed, of course)
• ·      Scrambled eggs with cottage cheese and avocado
• ·      Mashed potatoes (no peels)
• ·      Peppermint crunch Junior Mints
• ·      Turkey (well-chewed, of course)
•     Toast with seedless jam or honey
•     Thoroughly steamed carrots, green beans and asparagus
• ·      Lots of things that I adapt to be low fat and low fiber by tweaking ingredients

No wonder those Prednisone pounds persist!

     On the left, a more slender me with my son, Samuel just before he left for his mission to France. in July 2010. I hadn't started the cycle of bowel obstructions followed by high-dose Prednisone, tapering off the steroid, then the bowel obstructing again, etc. I weighed about 120 pounds.

     On the right, I am with my dear Husband, Dave on our Daughter, Megan's wedding day in October 2011. I'd been in the hospital two months earlier with a bowel obstruction, and                 the Prednisone was starting to change me, both inside and out.

.

     Both of these photos were taken in my kitchen. The one on the left in early summer, 2012.
     The one on the right, about two months ago.
     The scales say 139.

Happy New Year, everyone! Bon appetite!

Beth

17 days and counting

The past couple of days, I've been praying that all stays quiet inside. And that nothing I eat and drink will get stuck on its way through.

The endoscopy capsule, and what's left of the patency capsule, are both still deep inside.

I have an appointment for Dr. Radwin to perform a double-balloon antegrade enteroscopy with jejunal stricture dilation. 

January 8, 2013.

That's 17 days away. 

If I have an obstruction between now and then I should go to the emergency room, they told me. Hmmmm. I hope that's not how we spend our holiday. I hate ruining everyone's fun -- and mine, too.

Dr. Radwin's scheduler did place me at the top of a waiting list, just in case someone else needs to cancel. And of course, others scheduled for the procedure  need it, too, or they wouldn't be on the schedule. And I get the idea that the time slots when Dr. Radwin's double-balloon enteroscopies are few. Physicians who regularly perform procedures have clinic days and procedure days. So he doesn't do them every day that he works. And his scheduler said the double-balloon enteroscopies are always scheduled last on procedure days, since the time they will take is unpredictable.

If I get a spot before the end of the year, I'll be greatful for more than one reason.  Of course, the sooner the capsules are retrieved, the lower chance that one of them will get lodged in the narrow stricture causing a small bowel obstruction. That would be an emergency that might not have another treatment choice other than emergency bowel resection -- what Dr. Cutler described as to "clip out" that diseased section and rejoin the healthier ends. 

Eventually I may have to do that anyway. But I prefer not to have emergency surgery. I'd like the dilation Dr. Radwin will perform, if the stricture responds well, to buy me more time and less pain. Then if surgery is needed, it can be scheduled and planned for.

One more reason I'd like the procedure before December 31. I've more than met my insurance deductible and out-of-pocket maximum for 2012. January 1, 2013 starts a new plan year. Starting over with a new deductible (higher than it was for 2012, of course).  The difference is thousands of dollars. Sigh.

Enough whining.

So far, I'm not in pain. My diet is limited to squishiness with ultra-thorough chewing. But no sign of obstruction since the day of the X-ray.

Meanwhile, I intend to enjoy sharing the holidays with my family. 

Happy holidays to you, too!

Beth

Two foreign objects -- a gut feeling

X-ray of the endoscopy capsule
(round shape on the left)
and the dissolvable capsule
(above and to the right)
framed by my left pelvic bones

Not one, but two gut-loiterers

This morning, Dr. Cutler called me before office hours to tell me what his associate found when he read my capsule endoscopy test. It turns out that two objects are lodged in my jejunum, the longest, middle portion of the small intestine. One is the size of the endoscopy capsule. The other is about the same length and quite narrow. It's most likely what's left of the dissolvable patency capsule I swallowed two nights before my capsule endoscopy test. Our conversation centered on how we should retreive them both. 

The Jejunum is the longest
part of the small bowel

Was it inevitable?

Dr. Cutler said that the endoscopy capsule may be an unfortunate hastening of what would eventually need attention. He said that the capsule got pictures of the stricture where the jejunum narrows too much to let either capsule pass through. Lots of inflamed and fibrotic tissue in an hour-glass shape that is the culprit causing the frequent bowel obstructions. He said that the most effective, permanent treatment would be to clip out that diseased part of the bowel. He also agreed to ask Dr. Radwin if he thought they could be retrieved via a double-balloon enteroscopy and if there was a possibility of dilating the stricture to avoid surgery, at least for now.

Double-balloon
endoscopy illustration

A non-surgical choice

By the end of the day, Dr. Cutler and Dr. Radwin had agreed that the double- balloon antegrade enteroscopy with jejunal stricture dilation is do-able and a viable alternative to immediate surgery. The word came too late this afternoon to get it scheduled. But I'll follow up tomorrow and get this taken care of as soon as they can fit me in. 

Meanwhile, I'm sticking with things that can't get stuck. I do like frozen yogurt, pudding, hot cereal and yogurt. It's all good.

Eat lots of oranges, cookies and raw vegetables for me!

Stay well.

Merry Christmas!

Beth 

Déjà vu

Here we go again!

An endoscopy capsule is stuck in my gut. Again. In 2004, I had two capsules entrapped in my small intestine, and lost 50 cm of bowel in the surgery to remove them. 

So why did I do it again? Excellent question! One I keep asking myself. 

example of endoscopy pictures

I swallowed it to help Dr. Cutler, my gastroenterologist, find out why I so frequently have trouble with partial, and sometimes total, small bowel obstructions. The idea was that it was the best method to see via thousands of full-color, digital photographs the camera inside the capsule would take twice every second as it passed through my small intestine. We discussed other studies, but he felt that the capsule was the best choice for finding out what keeps happening.

Radio-opaque, dissolvable capsule
for patency verification

He tried to get approval from my insurance (Anthem Blue Cross) for me to first swallow a same-size, but dissolvable capsule to make sure it could get all the way through without getting stuck. The dissolvable capsule is visible on X-ray, but dissolves 30 hours after being swallowed. So if it did get stuck, we'd know I shouldn't swallow the other one made of plastic and metal. And, we'd see where it got stuck, which might offer some insight into where my small intestine is narrow enough to cause an obstruction when it gets inflamed. It sounded good to me. 

Someone at the gastrointestinal lab at at the University of Utah gave me one of the dissolvable capsules in the summer when the U was trying (unsuccessfully) to obtain authorization from Blue Cross for the same test. A vendor gave them some free samples to try, and they wanted to be sure I had one before they were gone, so I took it home and put it in my fridge. I would swallow it two days before the day I was scheduled to swallow the capsule containing the camera, then get an X-ray the next day to see if it was still there. 

The Blue Cross physician reviewers that Dr. Cutler talked with while seeking authorization for the procedure had never heard of such a thing. But after months of trying, Dr. Cutler finally found a cooperative physician who promised approval if I would undergo an entroclysis or a small-bowel follow-through X-ray first to make sure there was no place the endoscopy capsule could get stuck on the way through. So I chose the less expensive of the two -- the small-bowel follow through. 

Illustration of a normal
small intestine. Not mine.

Results said my bowel was perfectly patent and normal, with no known strictures or visible inflammation. So Dr. Cutler assured me that he was confident I would have no trouble passing the capsule all the way through without it getting stuck.

Two nights before I was scheduled for the capsule endoscopy test, I decided that I should swallow the dissolvable capsule even if Dr. Cutler didn't think I needed to. If it got stuck, I figured, I'd have pain like I usually have with small bowel obstructions, and I'd know there was a problem. My husband, David reminded me that the first time an endoscopy capsule was lodged in my gut, I didn't know it was there until the second capsule photographed it, as Dr. Kathryn Peterson at the University of Utah (who was a resident at the time, reading my study) said "just hanging out in there."

I swallowed the thing at 7:30 p.m. and waited for any indication of problems. I had my usually occasional twinges and lots of diarrhea, but no obvious, unrelenting, painful distention, no vomiting, no obvious sighs of obstruction. The next afternoon, I thought I'd better come clean and tell Dr. Cutler what I'd done. I thought it would be wise to have an X-ray to be sure there was no problem. So I called and left a message telling that I'd swallowed the radio-opaque, dissolving capsule, and suggested that maybe I should get an X-ray. After relaying the message to Dr. Cutler, his medical assistant (MA) called me back and said that there was no need for an X-ray because Dr. Cutler felt confident there would be no problem, based on the results of the small-bowel follow-through. 

2 endoscopy capsules and
1 dissolvable, radio-opaque capsule

So, at 8 am Friday, December 7, Dave and I went to the gastroenterologist's office and I swallowed the camera-in-a-capsule. It seemed considerably smaller than the two I swallowed in 2004. I asked how I'd know if it had passed through. The MA said most people see it when it passes. Hmmmmm. Lucky them! 

I wore the transmitter and belt all day and showed up back at the office at closing time. It seemed to have worked well all day, the little blue light on the device hanging from my shoulder blinked twice each second, signifying that it was indeed photographing my inner gut. I felt much like I do on other days when the diarrhea is frequent. I watched for it to pass, hoping I'd have the assurance it made it all the way through. I drank a lot of water and worried, of course. I didn't see it, but unless it floats, it would be easy to miss. The MA told me to report any obstruction symptoms.

endoscopy capsules stuck
in somebody else's gut

So, when the crampy twinges and nausea were a little more noticable on Friday, I called. Dr. Cutler ordered an X-ray. The technician said the report probably wouldn't get to Dr. Cutler until Tuesday. So I asked to see the image. There it was! As clearly identifiable as the pelvic bones that framed it. The copy they gave me on a disc didn't open with any program I have, so here's a picture of some other poor woman who has two capsules stuck inside her.

double-balloon endoscopy

"What is that metal thing in there?" asked the technician. I explained, then called and left another message for Dr. Cutler's MA, requesting a double-balloon endocscopy instead of surgery if possible to retreive it. As it was the end of the day, they'll get back to me next week.

It doesn't hurt much so far. But I don't want to wait until it's an emergency. 

Déjà vu?

Note to self: Only swallow edibles!

I hope your holidays are great so far.

Beth