I wanted to share the story of my son's indeterminate colitis (probably Crohn's) so that it will be searchable in case anyone else ends up in the same situation.
When my son was 4 years old he came down with a cold, and then started having diarrhea. Many kids we knew were sick at the time so we thought little of it. After a couple of days, I saw what seemed like blood in his stools. Started having lots of abdominal pain. Then began the long process many of you probably remember. We ruled out every conceivable pathogen. Twice. We put him on a brat diet. Tested for allergies. Gave myself a virtual Phd in gastroenterology. His labs were generally good. And nothing helped. Didn't sleep. That didn't help either.
Had an atrocious doctor whom we abandoned after a month for the fantastically good staff at Children's Hospital of Philadelphia. They suspected perhaps polyps. By the time the colonoscopy was finally scheduled, the symptoms had, for no particular reason, decided to go away. The scope showed signs of acute inflammation (no polyps), but the consensus was that it probably had been a difficult virus. No signs of chronic condition.
We were spending our summers in Alaska, and in August, when the blueberries were everywhere near our cabin, our son had a recurrence of symptoms. After a few weeks and a somewhat restricted diet, he returned to normal. Over the next year, there were more of these puzzling flares maybe once every two or three months. I developed lots of hypotheses (fructose sensitivity? lingering pathogen?), but nothing seemed to pan out.
At some point during the next summer, we gave him a small immodium dose when the bleeding returned, and within two days he was completely back to normal. We did this a number of times, each time with the same effect. During that period, the flares were perhaps become slightly more frequent, and I was increasingly coming to the conclusion that he had ulcerative colitis, and that it had simply not been sufficiently develop at the time of his colonoscopy for CHOP to have observed the physical hallmarks of chronic inflammation.
As as result of my amateur diagnosis, we stopped using the immodium "cure" for fear of toxic megacolon. As a result, his flares started going longer, and eventually, by the time he turned 6, seemed like they were going to become a permanent condition. His second colonoscopy confirmed colitis, of indeterminate variety, and we started on Pentasa, which did nothing. I suggested to the doctor that we switch to Asacol in order to focus the mesalamine on the colon. (The lad was always good at swallowing pills.) Doc agreed. Some positive effect, but not much. Upped the dosage, which seemed to show an additional small positive effect. But did not really stop the bleeding.
All throughout this time we were concerned with the details of diet. Certain triggers were obvious: chocoloate, large volumes of sugar (Halloween), blueberries. Others were less obvious (whole grains, raw vegetables, etc). It was galling to have the one child in the world who actually LIKED vegetables not be allowed to eat them. We were also giving him VSL3.
After many months without success, the doc started talking about steroids. The bleeding was slow, but the labs were getting very gradually worse. And of course, constant inflammation is not a good thing even at relatively low levels. My wife and I had wanted to avoid the steroids if at all possible, partly because of the obvious side effects and partly because the research I had read indicated that the move to steroids tends to correlate with more steroids. I asked the doc to try Rifaximin, which he agreed to, but it also failed to improve the situation.
As a last effort, I explained to the doc our early immodium experiences, and asked if he had any objection to our trying out a small dose of that drug. (I should also add that certain aspects of my sons case tend to indicate crohn's rather than UC.) The doc had no objection.
We gave a pediatric dose of immodium. No stools the next day. The day after that, the first bowel movement without blood in months. And so it has continued. His stools start to get loose, we give a scant teaspoon of imodium. Things return to normal in a day or two. Asacol and VSL3 have continued throughout. Hope that nothing changes. (Son is now 8.)
We moved to the west coast and my wife explained all of this to the new doctor, but he clearly doesn't believe a word of it. Nevertheless, the labs are good, so he's not arguing.
Obviously, I'm not prescribing anything here, just sharing an experience so that if anyone else runs into a similar experience, they have the confidence to raise it with their doctor.
Finally, I do have a hypothesis (as is my wont). Loperamide (the imodium drug) works as a kind of tranquilizer--an anti-anxiety medication that affects only the enteric nervous system in the gut (it's an opioid that does not pass through the blood-brain barrier). There is also a high correlation between IBD and anxiety disorders and even more obvious connection in people with IBS. My son himself demonstrates some relatively minor (but noticeable) features of anxiety. The question this raises, of course, is the involvement of the nervous system in the etiology of IBD and the extent to which IBD might be an umbrella covering a cluster of diseases of various etiologies. One sub-class might be inflammation caused by a spastic enteric nervous system which over-reacts to irritants both pathogenic and alimentary.
When my son was 4 years old he came down with a cold, and then started having diarrhea. Many kids we knew were sick at the time so we thought little of it. After a couple of days, I saw what seemed like blood in his stools. Started having lots of abdominal pain. Then began the long process many of you probably remember. We ruled out every conceivable pathogen. Twice. We put him on a brat diet. Tested for allergies. Gave myself a virtual Phd in gastroenterology. His labs were generally good. And nothing helped. Didn't sleep. That didn't help either.
Had an atrocious doctor whom we abandoned after a month for the fantastically good staff at Children's Hospital of Philadelphia. They suspected perhaps polyps. By the time the colonoscopy was finally scheduled, the symptoms had, for no particular reason, decided to go away. The scope showed signs of acute inflammation (no polyps), but the consensus was that it probably had been a difficult virus. No signs of chronic condition.
We were spending our summers in Alaska, and in August, when the blueberries were everywhere near our cabin, our son had a recurrence of symptoms. After a few weeks and a somewhat restricted diet, he returned to normal. Over the next year, there were more of these puzzling flares maybe once every two or three months. I developed lots of hypotheses (fructose sensitivity? lingering pathogen?), but nothing seemed to pan out.
At some point during the next summer, we gave him a small immodium dose when the bleeding returned, and within two days he was completely back to normal. We did this a number of times, each time with the same effect. During that period, the flares were perhaps become slightly more frequent, and I was increasingly coming to the conclusion that he had ulcerative colitis, and that it had simply not been sufficiently develop at the time of his colonoscopy for CHOP to have observed the physical hallmarks of chronic inflammation.
As as result of my amateur diagnosis, we stopped using the immodium "cure" for fear of toxic megacolon. As a result, his flares started going longer, and eventually, by the time he turned 6, seemed like they were going to become a permanent condition. His second colonoscopy confirmed colitis, of indeterminate variety, and we started on Pentasa, which did nothing. I suggested to the doctor that we switch to Asacol in order to focus the mesalamine on the colon. (The lad was always good at swallowing pills.) Doc agreed. Some positive effect, but not much. Upped the dosage, which seemed to show an additional small positive effect. But did not really stop the bleeding.
All throughout this time we were concerned with the details of diet. Certain triggers were obvious: chocoloate, large volumes of sugar (Halloween), blueberries. Others were less obvious (whole grains, raw vegetables, etc). It was galling to have the one child in the world who actually LIKED vegetables not be allowed to eat them. We were also giving him VSL3.
After many months without success, the doc started talking about steroids. The bleeding was slow, but the labs were getting very gradually worse. And of course, constant inflammation is not a good thing even at relatively low levels. My wife and I had wanted to avoid the steroids if at all possible, partly because of the obvious side effects and partly because the research I had read indicated that the move to steroids tends to correlate with more steroids. I asked the doc to try Rifaximin, which he agreed to, but it also failed to improve the situation.
As a last effort, I explained to the doc our early immodium experiences, and asked if he had any objection to our trying out a small dose of that drug. (I should also add that certain aspects of my sons case tend to indicate crohn's rather than UC.) The doc had no objection.
We gave a pediatric dose of immodium. No stools the next day. The day after that, the first bowel movement without blood in months. And so it has continued. His stools start to get loose, we give a scant teaspoon of imodium. Things return to normal in a day or two. Asacol and VSL3 have continued throughout. Hope that nothing changes. (Son is now 8.)
We moved to the west coast and my wife explained all of this to the new doctor, but he clearly doesn't believe a word of it. Nevertheless, the labs are good, so he's not arguing.
Obviously, I'm not prescribing anything here, just sharing an experience so that if anyone else runs into a similar experience, they have the confidence to raise it with their doctor.
Finally, I do have a hypothesis (as is my wont). Loperamide (the imodium drug) works as a kind of tranquilizer--an anti-anxiety medication that affects only the enteric nervous system in the gut (it's an opioid that does not pass through the blood-brain barrier). There is also a high correlation between IBD and anxiety disorders and even more obvious connection in people with IBS. My son himself demonstrates some relatively minor (but noticeable) features of anxiety. The question this raises, of course, is the involvement of the nervous system in the etiology of IBD and the extent to which IBD might be an umbrella covering a cluster of diseases of various etiologies. One sub-class might be inflammation caused by a spastic enteric nervous system which over-reacts to irritants both pathogenic and alimentary.
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