Hello all! I have been reading this forum for awhile now, but I figure it's about time to jump in. My basic history (as it relates to IBD) is this:
My father has Crohn's. When he was about my age (30) he had a bowel resection (I assume small bowel, but I was only 2 or 3 at the time), and has mostly been able to control his Crohn's with dietary changes. He's on SCD now, though before that he had a flare that ended with him in the hospital for blood transfusions. Overall, he's managed it very well considering he (to my knowledge) does not take any meds for it.
My story started about 3 years ago when some routine lab work showed that I was severely anemic (microcytic, hypochromic anemia is what they called it, I think). They couldn't find an obvious cause, so I got to do a EGD, C'scope, and then a pillcam. All these really showed was some gastritis and a hiatal hernia, but everything seemed to be in great shape bowel-wise.
Fast forward a year later, and I start noticing a lot of mucous in my stool, then mucous alone, then blood and mucous. This was on and off, so I didn't worry too much. I did go see my GI, but there was not any obvious blood at that time so he pretty much just shrugged and handed me the occult blood test to take home (or "poo card" as I call it). A few months later things were WAY worse, so I went in again and they ordered bloodwork, stool tests, and a flex sig. All labs were normal, but the flex sig showed severe colitis. He gave me asacol 800s and within a month or so, I was back to normal.
Now it is another year later, and I've been flaring for about 2 months. I had a second C'scope, which my gastro said was confirmatory for IBD (the only place that was not inflamed was my sigmoid colon). Based on that, he said he could not differentiate between treated UC (since I was taking Asacol) or Crohn's. Last week, I did the small bowel capsule endoscopy, and the results were very confusing. They didn't see any frank inflammation or ulcerations, but there were tiny AVMs scattered all through my small bowel "far to many to cauterize". They don't really seem to know what to make of these. He suggested that they could actually be tiny ulcers that are healing, but didn't really seem to think it mattered. Either way, he added Uceris to my meds.
So, now that I've written a book . . .My question is, has anyone else ever been told they have AVMs scattered in their small bowel? He said these usually are seen in people 60 and over. I'm 30, and these were NOT seen on the pillcam from 2 years ago.
My in-flare symptoms are:
gas/bloating
low grade fever most of the time
aching pain in lower right abd that travels down that leg
rectal bleeding - sometimes severe
exhaustion
arthritis of the mid-back confirmed via x-ray
I really don't know where to go from here. In addition to the Uceris, I"m on Asacol HD 1600mg 3x per day and proctofoam as needed. Despite all the bleeding, my CBC was completely normal. My CRP is a little high, but that's no surprise.
Thanks in advance for any replies/suggestions. You guys seem like an amazing community!
My father has Crohn's. When he was about my age (30) he had a bowel resection (I assume small bowel, but I was only 2 or 3 at the time), and has mostly been able to control his Crohn's with dietary changes. He's on SCD now, though before that he had a flare that ended with him in the hospital for blood transfusions. Overall, he's managed it very well considering he (to my knowledge) does not take any meds for it.
My story started about 3 years ago when some routine lab work showed that I was severely anemic (microcytic, hypochromic anemia is what they called it, I think). They couldn't find an obvious cause, so I got to do a EGD, C'scope, and then a pillcam. All these really showed was some gastritis and a hiatal hernia, but everything seemed to be in great shape bowel-wise.
Fast forward a year later, and I start noticing a lot of mucous in my stool, then mucous alone, then blood and mucous. This was on and off, so I didn't worry too much. I did go see my GI, but there was not any obvious blood at that time so he pretty much just shrugged and handed me the occult blood test to take home (or "poo card" as I call it). A few months later things were WAY worse, so I went in again and they ordered bloodwork, stool tests, and a flex sig. All labs were normal, but the flex sig showed severe colitis. He gave me asacol 800s and within a month or so, I was back to normal.
Now it is another year later, and I've been flaring for about 2 months. I had a second C'scope, which my gastro said was confirmatory for IBD (the only place that was not inflamed was my sigmoid colon). Based on that, he said he could not differentiate between treated UC (since I was taking Asacol) or Crohn's. Last week, I did the small bowel capsule endoscopy, and the results were very confusing. They didn't see any frank inflammation or ulcerations, but there were tiny AVMs scattered all through my small bowel "far to many to cauterize". They don't really seem to know what to make of these. He suggested that they could actually be tiny ulcers that are healing, but didn't really seem to think it mattered. Either way, he added Uceris to my meds.
So, now that I've written a book . . .My question is, has anyone else ever been told they have AVMs scattered in their small bowel? He said these usually are seen in people 60 and over. I'm 30, and these were NOT seen on the pillcam from 2 years ago.
My in-flare symptoms are:
gas/bloating
low grade fever most of the time
aching pain in lower right abd that travels down that leg
rectal bleeding - sometimes severe
exhaustion
arthritis of the mid-back confirmed via x-ray
I really don't know where to go from here. In addition to the Uceris, I"m on Asacol HD 1600mg 3x per day and proctofoam as needed. Despite all the bleeding, my CBC was completely normal. My CRP is a little high, but that's no surprise.
Thanks in advance for any replies/suggestions. You guys seem like an amazing community!
