Another Day, Another Dilation

I was ready to chicken out of having another procedure to dilate the strictures in my small bowel. 

Antegrade, double-balloon
enteroscopy

I've been sticking to foods that won't get stuck. And the diarrhea didn't seem unmanageable. And the pain for partial obstructions was absent for a while. 

"Maybe I don't need another expensive, time-killing, foggy-head-making, invasive procedure," I thought. "Maybe I'll just cancel it and think about it again if it starts getting worse."

Then it happened again. The old, familiar, partial-obstruction pain as my small bowel tries to work through something that doesn't easily slide through the stricture. 

NO FAIR! I didn't splurge on any crunchy, yummy, fresh veggies. 

Sigh.

Endoscopy camera capsule retrieved from
my small intestine in February 2013.
Shown here with a quarter for size perspective.

So I kept the appointment. At noon Tuesday, May 21, I'll be checking in for an out-patient antegrade, double-balloon endoscopy for dilation of strictures. 

 

I know the strictures are still there, because they don't usually self-resolve. And they were holding hostage the endoscopy camera capsule, until the previous enteroscopy to retrieve it. Because the venture in January to both dilate strictures and retrieve the capsule was not successful, the doctor focused the February adventure on simply retrieving the capsule. And here's proof that he did.

He recommended that I return in April (OK, so I procrastinated) for stricture dilation, and then return for repeat dilations as needed. Apparently, he has some patients who get dilated a couple of times a year.

So, I'm wondering if dilation really works, since I'd just have to go back a couple of times a year for a repeat performance. But if I were symptom-free for months at a time, maybe it would be worth it? It's both expensive and somewhat risky. But not as risky as surgery, which is always a possibility if a stricture causes a complete obstruction that could kill me.

Hmmm. I'm thinking I'll see how tomorrow goes. I have a follow-up appointment May 31 with Dr. Radwin, who will perform the procedure. I want to talk with him about it when I'm not loopy on anesthesia. Then maybe I can get a better idea of whether this could be an effective way to control the Crohn's Disease. I'll ask what has become of the strictures he dilated before. Did they spring right back? Are the tissues elastic enough to endure future dilations without me ending up with a perforated bowel?

I'll keep you posted.

Meanwhile, enjoy some salad, nuts, hot-fudge sundaes and M&Ms or Kit Kat bars for me!

Take care,

Beth :-)

 

Still Here -- Both Me and The Strictures

Sometimes the constancy, the unpredictability, and permanence of Crohn’s Disease weighs heavily on me and I try to ignore it for a while. I want, somehow, for the story to have a happy – even miraculous ending instead of plodding on and on in drab, irritating tedium.

Anyway, that’s my excuse for not keeping my Crohn’s blog up to date of late.

But my delay revealed that at least one reader wants to know what happens next. Thank you, Juliette, for encouraging me to continue.

In a nutshell, two weeks after January's double-balloon enteroscopy, the endoscopy capsule was still stuck, so it was time to try again to retrieve it.

In February, Dr. Radwin went back in via an antegrade (through the mouth, down the throat) approach with the double-balloon enteroscopy and retrieved the capsule that was stuck. He didn’t try to dilate any of the other strictures he saw, since last time that resulted in the capsule staying in place.

The doctor recommended that I return in April so he can dilate the strictures.

Since then, I’ve had the pleasure of paying for the first two procedures. Not cheap, of course. And I continue to envy other people's fresh, crisp salads and gooey cookies while I live on scrambled eggs, yogurt, pasta and other squishy, impossible-to-get-stuck foods. Oh, and frozen yogurt, of course.

I haven’t returned for more small-bowel-stricture dilation. I’ve just been dealing with symptoms while trying to live as normally as one can when the highest priority is often noticing where the nearest rest room is. I have an appointment to repeat the procedure in a couple of weeks. But I’m going to cancel because I have an important conference to attend for my home-health consulting business.

As to whether dilation is really helpful, I can’t say whether it will be for me or not. Different people respond differently.

It is, though, only a temporary fix. The strictures come back. But if being dilated provided symptom relief for weeks or months at a time, and I had the procedure a couple of times a year, I would consider that to be far superior to having surgery to remove the diseased section of small bowel.

Hmmmm. What would you do?

Thanks for reading my blog. I hope it helps someone feel less alone with life’s challenges. We’re all just doing the best with what we’ve got. Right?

Take care,

Beth

What will tomorrow bring?

Tomorrow is the next X-ray to see if the endoscopy capsule is still stuck. 

Meanwhile, today is one of frequent restroom visits and nothing but water by mouth since breakfast. 

Having to leave twice during our two-hour stake conference meeting this morning was a little distressing. And I barely made it to the bathroom in time when we got home. 

Later, watching my daughter, Megan, and her husband, Jeff, assemble a family photo gallery for me on the wall in our front room was a fun distraction from how I was feeling. It turned out great! I love it!

Things are a little quieter now, though. So I might eat a normal dinner.

Crossing my fingers that tomorrow's X-ray looks nothing like the one two weeks ago.

And praying that I will keep being as healthy as I can be.

I let you know what happens.

Take care of yourself,

Beth

Tenacious endoscopy capsule still stuck -- yuck alert!

I’m disappointed, but not surprised.

The capsule is still stuck. Or, rather, it’s stuck again, in a different place. No doubt, it’s entrapped by a different stricture farther along in my small bowel.

Here's an iphone photo I took of the image on the radiology tech's computer screen. The image on the right is the X-ray I had at Granger Medical Center in December. The image on the left is the X-ray done at the same clinic on Monday, January 14, two days ago.

It looks like it's retreated to a higher position. "Geographically," that's true. But remember that the small bowel loops around and up and down countless times in the abdomen. And peristalsis (the bowel’s normal contraction-and-release cycle) does not usually move bowel contents back toward the stomach, but rather toward expulsion.

Anatomically, the capsule is now probably lower than, or distal to its position before the double-balloon enteroscopy, during which the higher, or proximal stricture was dilated.

They want to X-ray again in two weeks to see if it passes by then. I have no reason to expect that it will, given my history. But if it does, Hallelujah!

Meanwhile, it’s obvious to me that the capsule is intermittently blocking the way, preventing normal movement through my small intestine, then backing off. I know this because my bowel patterns are alternating between brief, normal-ish (for most people) periods and “frequent flyer” hours or days that I can best describe as resembling a bowel prep for a colonoscopy. If you’ve had one, you know what I mean. If not – lucky you!

I’m not having complete obstructions, though. I’m grateful for that. In a partial obstruction, anything solid backs up behind whatever is in the way (a tight stricture, for instance, or in this case, the endoscopy capsule and a stricture), and only liquid gets through, causing the bowel-preppish experience, accompanied by cramping and bloating. Then, when natural peristalsis allows, it backs away, letting through the solids that can get through the stricture. This causes the normal-ish bowel movements.

Sigh. I know. More than you wanted to know.

I’m grateful for medications that help me through this. I’m hoping to avoid a full obstruction that would hike my Prednisone back up again, now that I’m almost off of it. But if a full obstruction occurs, I’m ready for it.

Praying for the best, and going on with life.

Take care of yourself!

Beth

Stricture is gone, but endoscopy capsule still MIA

Well, I got good news and bad news.

The good news is that the stricture that was holding hostage the endoscopy capsule and the patency capsule remnants is no more. Dr. Radwin dilated it during my double-balloon enteroscopy on Tuesday.

The bad news is that one of the balloons vital to the enteroscopy’s success popped inside me, making the capsule’s retrieval impossible on the way out of my gut.

Here’s what the stricture looked like before the dilation.

Notice the clear, domed end of the endoscopy capsule in the bottom left corner of this image. The endoscopy capsule is about the same as the end of my ring finger, from the last knuckle to the tip. Next, look directly above the capsule at the small, round, dark opening at the end of the pink tunnel. The dark opening is the stricture – the narrowed area of my small bowel before it was dilated. The pink tunnel is the normal-sized lumen, or inside tunnel of the jejunum of my small intestine.  No wonder the capsule couldn’t get through!

Now that I’ve seen this, I can’t help but wonder how the small bowel follow-through study I had before could have possibly shown, as the report said, a normal small intestine with no sign of any strictures. Hmmmm. I’m not a radiologist. It would be interesting to find out if a different reading by a different radiologist might yield different results.

Theoretically, the indigestible items should find their way out on their own, now that the stricture has been dilated. That is, if there are no strictures farther on to trap them. Nobody knows whether there are or not. I haven’t seen any evidence of the capsule leaving, though I admit I could easily have missed it. I’m supposed to have another X-ray (Can you say more radiation exposure?) in two weeks to see if anything inorganic remains trapped.

I’ve requested copies of the capsule endoscopy and double-balloon enteroscopy reports. I’ll post again about any information that’s helpful.

Meanwhile, imagine that you swallowed a frozen garden hose, left it there for two hours, then had someone yank it out – Got it? OK. Then you know how my throat felt after the enteroscopy.  Swallowing? Not fun. It finally feels on its way to normal again today.

Next, imagine that a huge, blunt thing (like a fist, but abdomen-sized) hit you just below the belly button a few times. That’s pretty much how I’d describe my gut reaction – that is, once the nausea waned. And lots of trips to the restroom. Not pleasant.

Today, the pain is only intermittent instead of constant. And I only had to dash to the restroom 8 or 9 times today. Mostly earlier. So I think it’s getting better.

Because the pain twinges feel a lot like the pain that warns of impending bowel obstructions, I don’t know if the capsule is still in there, getting stuck intermittently in a yet-unknown stricture, or if my intestines are just still complaining about being roughed up on Tuesday.

Today was better than yesterday. That’s a good thing.

Take care,

Beth

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