New here, and still awaiting results of the Prometheus test, but GI doc suspects Crohn's based on result of a biopsy he took during a colonoscopy a few weeks ago.
My story really started years ago, I've suffered from diarrhea for at least fifteen years, varying from as much as two or three days in a given week to none at all. I never really brought it up to a doctor as I basically just dealt with it.
About two and a half years ago I had my gall bladder removed after having stomach, back, and chest pains for months, sometimes quite intense. That seemed to help, but just over a year ago, I found myself making a trip to the ER with back pain, middle/lower back. While it was diagnosed as a spasm, treated with muscle relaxers and I was released, I suspect this was the beginning of a rough year.
About six weeks later My wife found me curled up in our bathroom with severe - I say an 8/10 - abdominal pain. Wound up spending four days in the hospital with a small bowel obstruction diagnosed via CT scan, treated with IV fluids, zofran, dilaudid, morphine, and an NG tube to rest the bowel. All sorts of tests followed after my hospital release, including an endoscopy and colonoscopy, small bowel follow thru, and more and more. All normal. It was dismissed as a paralytic ileus and a one time event, as there was no bivouac mechanical obstruction.
This happened again a few months later, and the surgeon determined I had an umbilical hernia, and that was repaired along with a complete laproscopic exploration of the small intestine, finding nothing out of the ordinary. The surgeon suggested that the hernia probably caused the SBO's.
That made sense until I had another SBO and hospital stay in February, on my birthday as it happens. I like to joke that my wife had made reservations at a very nice restaurant, but instead I had barium for dinner. Once again that cleared without surgical intervention, and a gastroenterologist got involved more deeply in my case.
Around this time, occasionally I would notice blood in my stool. I've had some incidences in the past where, after a particularly bad bout of diarrhea I would have some bright red blood, but my PCP attributed that to tearing/fissure due to straining. This time it was different, red but less bright, and sort of 'marbled' into the stool, if that makes sense.
More tests, and lots of medication changes, including something called Librax, which seems to help the diarrhea but I combine now with Colace to help keep things moving. Another hospital stay in April, but this time no obstruction was present, but I was apparently quite constipated and vomiting whenever i tried to eat anything, even liquids, and dehydrated. I was treated for the pain, nausea, and with laxatives (miralax and magnesium citrate). Once things starts moving again, I felt much better, and was again released under the care of the GI.
More blood in the stool led to a second colonoscopy. This time GI found some sort of lesion that was bleeding, which he cauterized. He also took some biopsies, but no polyps. I found myself spending that evening in the hospital again, as after coming back to consciousness following the scope I was again in severe pain. Hospital Radiologist said he saw "appendagitis" which I'd never heard of, but apparently shares many of the symptoms I've described.
GI, when I followed up with him the next week, dismissed that diagnosis, saying he didn't see that on the CT Scan. Instead he said the biopsy results were positive and indicative of Crohn's, and sent me off for the Prometheus test.
Generally speaking I continue to have diarrhea and an urgent need to evacuate a few times per week. I have had abdominal pain for about the past year, probably about seventy percent of the time. Sometimes it's relatively mild, around a 3/10. Sometimes it's more severe, say 5-6/10. On those days I have started taking Percocet, usually one or two doses gets me past the severe pain and back to a tolerable level. Anything worse than that and I would probably be making an ER trip, but that hasn't happened yet.
Anyway, the tentative diagnosis was about ten days ago, and I have a follow-up with the GI next week. So I'm awaiting the results. On the one hand, it's a frightening diagnosis. On the other, it will at least be a comfort to know what it is and start treatments. But what if the Prometheus results are negative? Does that override the biopsy and symptoms?
I'm curious though if this diagnosis makes sense? I suspected maybe Crohn's based on the symptoms alone, but the radiologist that did the small bowel follow thru said no sign of it last July. Could that simply be because he was looking at the junction between the small and large intestine for the telltale signs, and I've got a different variation?
I get the impression that Crohn's is a very personal disease,and effects different people in different ways, is that true? And if so, could my presentation - recurring diarrhea, abdominal pain, cramping, obstructions that occur and clear basically n their own - be an example of this?
My story really started years ago, I've suffered from diarrhea for at least fifteen years, varying from as much as two or three days in a given week to none at all. I never really brought it up to a doctor as I basically just dealt with it.
About two and a half years ago I had my gall bladder removed after having stomach, back, and chest pains for months, sometimes quite intense. That seemed to help, but just over a year ago, I found myself making a trip to the ER with back pain, middle/lower back. While it was diagnosed as a spasm, treated with muscle relaxers and I was released, I suspect this was the beginning of a rough year.
About six weeks later My wife found me curled up in our bathroom with severe - I say an 8/10 - abdominal pain. Wound up spending four days in the hospital with a small bowel obstruction diagnosed via CT scan, treated with IV fluids, zofran, dilaudid, morphine, and an NG tube to rest the bowel. All sorts of tests followed after my hospital release, including an endoscopy and colonoscopy, small bowel follow thru, and more and more. All normal. It was dismissed as a paralytic ileus and a one time event, as there was no bivouac mechanical obstruction.
This happened again a few months later, and the surgeon determined I had an umbilical hernia, and that was repaired along with a complete laproscopic exploration of the small intestine, finding nothing out of the ordinary. The surgeon suggested that the hernia probably caused the SBO's.
That made sense until I had another SBO and hospital stay in February, on my birthday as it happens. I like to joke that my wife had made reservations at a very nice restaurant, but instead I had barium for dinner. Once again that cleared without surgical intervention, and a gastroenterologist got involved more deeply in my case.
Around this time, occasionally I would notice blood in my stool. I've had some incidences in the past where, after a particularly bad bout of diarrhea I would have some bright red blood, but my PCP attributed that to tearing/fissure due to straining. This time it was different, red but less bright, and sort of 'marbled' into the stool, if that makes sense.
More tests, and lots of medication changes, including something called Librax, which seems to help the diarrhea but I combine now with Colace to help keep things moving. Another hospital stay in April, but this time no obstruction was present, but I was apparently quite constipated and vomiting whenever i tried to eat anything, even liquids, and dehydrated. I was treated for the pain, nausea, and with laxatives (miralax and magnesium citrate). Once things starts moving again, I felt much better, and was again released under the care of the GI.
More blood in the stool led to a second colonoscopy. This time GI found some sort of lesion that was bleeding, which he cauterized. He also took some biopsies, but no polyps. I found myself spending that evening in the hospital again, as after coming back to consciousness following the scope I was again in severe pain. Hospital Radiologist said he saw "appendagitis" which I'd never heard of, but apparently shares many of the symptoms I've described.
GI, when I followed up with him the next week, dismissed that diagnosis, saying he didn't see that on the CT Scan. Instead he said the biopsy results were positive and indicative of Crohn's, and sent me off for the Prometheus test.
Generally speaking I continue to have diarrhea and an urgent need to evacuate a few times per week. I have had abdominal pain for about the past year, probably about seventy percent of the time. Sometimes it's relatively mild, around a 3/10. Sometimes it's more severe, say 5-6/10. On those days I have started taking Percocet, usually one or two doses gets me past the severe pain and back to a tolerable level. Anything worse than that and I would probably be making an ER trip, but that hasn't happened yet.
Anyway, the tentative diagnosis was about ten days ago, and I have a follow-up with the GI next week. So I'm awaiting the results. On the one hand, it's a frightening diagnosis. On the other, it will at least be a comfort to know what it is and start treatments. But what if the Prometheus results are negative? Does that override the biopsy and symptoms?
I'm curious though if this diagnosis makes sense? I suspected maybe Crohn's based on the symptoms alone, but the radiologist that did the small bowel follow thru said no sign of it last July. Could that simply be because he was looking at the junction between the small and large intestine for the telltale signs, and I've got a different variation?
I get the impression that Crohn's is a very personal disease,and effects different people in different ways, is that true? And if so, could my presentation - recurring diarrhea, abdominal pain, cramping, obstructions that occur and clear basically n their own - be an example of this?