Praying that another bowel resection is not in my future. But preparing myself if it is to be.
Next week my "antegrade double-balloon enteroscopy with jejunal stricture dilation" procedure will, hopefully, result in an adequately dilated area where a stricture currently has trapped an endoscopy camera capsule. And what's left of the patency capsule I swallowed to make sure the endoscopy capsule could pass successfully.
Sigh.
I've been here before.
Five years after my initial Crohn's diagnosis (based on a rectal abscess found while a surgeon was performing a partial anal sphyncterectomy to relieve anal spasms -- Oops! It's the best treatment for that problem, unless you have Crohn's Disease. Then it can result in fecal incontinence. (Delightful.) I signed up for a investigational medication study at the University of Utah.
Part of the study included before and after photos via capsule endoscopy. So I swallowed the capsule at the beginning of the study. At the time, I didn't know I had a stricture. The day after the study, an X-ray showed the capsule low in my abdomen. The position convinced the study administrators that it was probably in my sigmoid colon and would pass within the day. So I didn't worry about it.
I continued with the study and swallowed the "after" endoscopy capsule two months later. That night at 10, I got a phone call from the GI resident who told me the second capsule took pictures of the first capsule, "just sorta hanging out in there."
I lost 45 centimeters of ileum, 5 cm of colon, 14 days in the hospital, two months off work, and my hope that I'd never need bowel surgery.
I've been on Remicade (some relief at the time, but too expensive to continue), Prednisone (that miracle obstruction-reliever that REALLY makes you pay the price), 5-ASA, Cimzia, Azathioprine (Imuran's generic), Pentasa (Mesalamine for small bowel treatment), Canasa suppositories (Mesalamine for rectal treatment) lots of loperamide, simethicone, statins (until the myopathy became unbearable), Narcotics for pain relief, and probably some others I'm not recalling right now.
I've heard the words "We want to keep you in remission" when the diarrhea and pain I was experiencing at the time felt NOTHING like remission to me.
I've had intermittent bowel obstructions resulting in two hospitalizations when I couldn't resolve them on my own with mega steroids. At one point, for about a year, I couldn't taper below 10 mg of Prednisone without incurring another small bowel obstruction.
My GI doc was at a loss, because all the tests (retrograde double-balloon enteroscopy, small-bowel follow-through, colonoscopy, etc.) said I was completely normal. Couldn't find an obstruction. It always irks me that they never do the tests to find out what is wrong WHILE THE OBSTRUCTION IS HAPPENING. They wait until it's resolved. Hmmmm. I wonder why they can't find the problem.
The doctor tried for months to obtain authorization (mostly got denials instead) from my insurance company for a patency capsule test and, if successful in showing a patent bowel, followed by a capsule endoscopy. He said that would give him the best information to figure out the best treatment to stop the repeating obstructions.
Finally, the insurance company agreed to authorize the capsule endoscopy if I'd first undergo a small-bowel follow-through or an enteroclysis to rule out strictures. They would NOT authorize the patency capsule. The Medical director my doc consulted with had never heard of a patency capsule. I wanted to say "Google it then!"
The small-bowel follow-through report said my small bowel looked completely normal, with no sign of strictures. Of course!
I was still worried, though, that an undetected stricture could imprison the plastic and metal capsule like before. So, two days before my scheduled endoscopy capsule test, I swallowed a patency capsule. A GI lab technician had a free one from a vendor and gave it to me in the early days of trying to get the test approved. I figured that if the patency capsule got stuck, it'd feel an awful lot like the other bowel obstructions I'd had. I'd notice the pain, bloating, extreme thirst, abdominal rigidity, etc. and know I shouldn't swallow the endoscopy capsule. The patency capsule dissolves within 30 hours into pieces that are supposedly small enough to pass through any bowel.
I awaited symptoms, but felt no definite obstruction. It was a frequent diarrhea day, but not anything more daunting than most difficult days. About 20 hours after I swallowed the patency capsule, I decided to come clean and confess to my GI doc and ask for a X-ray to ensure my bowel's patency. The medical assistant called back and said my MD said there was no need for an X-ray because he was confident the endoscopy capsule would pass without a problem, based on my small-bowel follow-through study.
So I swallowed the capsule.
A few days later, pain and nausea returned. An X-ray confirmed the entrapped endoscopy capsule and what is left of the patency capsule.
The same day, the MD reading my test informed my GI doc that the capsule was stuck in my jejunum. They got a lot of photos of the proximal end of the stricture, though!
Never a dull moment!
Next week my "antegrade double-balloon enteroscopy with jejunal stricture dilation" procedure will, hopefully, result in an adequately dilated area where a stricture currently has trapped an endoscopy camera capsule. And what's left of the patency capsule I swallowed to make sure the endoscopy capsule could pass successfully.
Sigh.
I've been here before.
Five years after my initial Crohn's diagnosis (based on a rectal abscess found while a surgeon was performing a partial anal sphyncterectomy to relieve anal spasms -- Oops! It's the best treatment for that problem, unless you have Crohn's Disease. Then it can result in fecal incontinence. (Delightful.) I signed up for a investigational medication study at the University of Utah.
Part of the study included before and after photos via capsule endoscopy. So I swallowed the capsule at the beginning of the study. At the time, I didn't know I had a stricture. The day after the study, an X-ray showed the capsule low in my abdomen. The position convinced the study administrators that it was probably in my sigmoid colon and would pass within the day. So I didn't worry about it.
I continued with the study and swallowed the "after" endoscopy capsule two months later. That night at 10, I got a phone call from the GI resident who told me the second capsule took pictures of the first capsule, "just sorta hanging out in there."
I lost 45 centimeters of ileum, 5 cm of colon, 14 days in the hospital, two months off work, and my hope that I'd never need bowel surgery.
I've been on Remicade (some relief at the time, but too expensive to continue), Prednisone (that miracle obstruction-reliever that REALLY makes you pay the price), 5-ASA, Cimzia, Azathioprine (Imuran's generic), Pentasa (Mesalamine for small bowel treatment), Canasa suppositories (Mesalamine for rectal treatment) lots of loperamide, simethicone, statins (until the myopathy became unbearable), Narcotics for pain relief, and probably some others I'm not recalling right now.
I've heard the words "We want to keep you in remission" when the diarrhea and pain I was experiencing at the time felt NOTHING like remission to me.
I've had intermittent bowel obstructions resulting in two hospitalizations when I couldn't resolve them on my own with mega steroids. At one point, for about a year, I couldn't taper below 10 mg of Prednisone without incurring another small bowel obstruction.
My GI doc was at a loss, because all the tests (retrograde double-balloon enteroscopy, small-bowel follow-through, colonoscopy, etc.) said I was completely normal. Couldn't find an obstruction. It always irks me that they never do the tests to find out what is wrong WHILE THE OBSTRUCTION IS HAPPENING. They wait until it's resolved. Hmmmm. I wonder why they can't find the problem.
The doctor tried for months to obtain authorization (mostly got denials instead) from my insurance company for a patency capsule test and, if successful in showing a patent bowel, followed by a capsule endoscopy. He said that would give him the best information to figure out the best treatment to stop the repeating obstructions.
Finally, the insurance company agreed to authorize the capsule endoscopy if I'd first undergo a small-bowel follow-through or an enteroclysis to rule out strictures. They would NOT authorize the patency capsule. The Medical director my doc consulted with had never heard of a patency capsule. I wanted to say "Google it then!"
The small-bowel follow-through report said my small bowel looked completely normal, with no sign of strictures. Of course!
I was still worried, though, that an undetected stricture could imprison the plastic and metal capsule like before. So, two days before my scheduled endoscopy capsule test, I swallowed a patency capsule. A GI lab technician had a free one from a vendor and gave it to me in the early days of trying to get the test approved. I figured that if the patency capsule got stuck, it'd feel an awful lot like the other bowel obstructions I'd had. I'd notice the pain, bloating, extreme thirst, abdominal rigidity, etc. and know I shouldn't swallow the endoscopy capsule. The patency capsule dissolves within 30 hours into pieces that are supposedly small enough to pass through any bowel.
I awaited symptoms, but felt no definite obstruction. It was a frequent diarrhea day, but not anything more daunting than most difficult days. About 20 hours after I swallowed the patency capsule, I decided to come clean and confess to my GI doc and ask for a X-ray to ensure my bowel's patency. The medical assistant called back and said my MD said there was no need for an X-ray because he was confident the endoscopy capsule would pass without a problem, based on my small-bowel follow-through study.
So I swallowed the capsule.
A few days later, pain and nausea returned. An X-ray confirmed the entrapped endoscopy capsule and what is left of the patency capsule.
The same day, the MD reading my test informed my GI doc that the capsule was stuck in my jejunum. They got a lot of photos of the proximal end of the stricture, though!
Never a dull moment!
