- Joined
- Dec 11, 2013
- Messages
- 10
Hi! I'll give as much detail as possible in my story, though it's kinda long, so anyone who might answer has enough info to go on.
As a kid, I was never super healthy. I always had problems with my gut (lactose intolerant, H. Pylori) and suffered chronic sinusitis, even had surgery to try to help with it. I'm also a bit of an anxious person, though nothing that I've had to have treated, just travel anxiety, nervous pees, all that jazz. I did see a therapist as a little kid who basically just said I'm a control freak and need to chill ;]
Fast forward to my freshman year of high school when I began to get some debilitating stomach cramps that resulted in ill-timed, often embarrassing trips to the bathroom. Eating aggravated these even further, and they kept getting worse. I mentioned this at a regular visit to my pediatrician's nurse practitioner my Junior year of high school, who put me on muscle control medicine for IBS, as she had had a similar situation at my age with that diagnosis.
2 months later, that medicine was doing nothing for me, and I continued to feel sicker, with some intermittent vomiting. I was sent to a pediatric gastro, who suggested therapy to begin with. I opted not to and go straight to physical tests, as I knew from experience what it felt like when I had a stomach ache from anxiety and this was certainly not that. I began a series of tests, starting with a scope.
This endoscopy/colonoscopy showed "cobble stoning" in the back of my throat and petechiae in my stomach, which the doctor attributed to GERD (explaining my struggles with sinus infections) and some H. Pylori, but there was no definitive evidence of Crohn's or Colitis.
I was then hospitalized for severe pain in the lower left side of my abdomen, had tests done at the hospital, and nothing was conclusive.
My GI ordered a barium test, blood work, ultrasounds, pill cams, stool samples - you name it. Nothing showed any sign of disease, but I certainly was not feeling well. At this point, with the pain, I was put on Apriso (mesalamine) and Budesonide. I also had a scrip for Zofran because of GERD related nausea.
Then came the only time I bled with a BM - in a McDonald's, in the middle of nowhere, on the way home from a camping trip. I showed the picture to my actual doctor during a rare visit to see her personally and she put me on Methotrexate on the spot and began to suspect Crohn's. I lasted 8 weeks on Methotrexate before my busy life as a high schooler made the side effects (fatigue, hair loss, rapid heart rate, nausea) intolerable. We were then back to square one.
After deciding to end Methotrexate, my doctor ordered new tests and put me back on the doses of Budesonide and Apriso I was on before. I had another endoscopy/colonoscopy which came up with severe erosive gastritis in my stomach and throat (I have vocal nodes, which is semi-detrimental to someone in performing arts) and proctitis in my rectum. This was treated with antibiotics (to rule out bacteria, as the petechiae was present all throughout the tested area) and a round of mesalamine enemas. As before, biopsies were taken, as my entire digestive tract seemed inflamed and irritated, but not damaged. All the biopsies came back negative.
My doctor sent for one more blood test - it was sent to a lab called Prometheus, anyone heard of it? This too, with much disappointment, came back negative. The GI's nurse practitioner again brought up physical and emotional therapy, saying "I don't know why the methotrexate helped you. You don't have anything as far as we can tell" and I reluctantly agreed, as I felt there's nothing else I can do. She is convinced that my stomach aches are caused by anxiety, rather than causing me anxiety (which is what I am sure of - I am so afraid of being in pain). I requested to be taken off of the Apriso and Budesonide, as I see no reason in being treated for a disease my doctor does not think I have.
Today I went to my chiropractor (started seeing her for an unrelated rib displacement) who had previously drained my gallbladder, giving me much relief. However, she refrained from doing anything else so as not to interfere with what my GI was doing. With the blessings of my GI's nurse practitioner, she did a "deep tissue abdomen massage", essentially working on any places where I had adhesions. Every place where I had severe cramping was terribly irritated and was an adhesion sight.
So, my question is, am I crazy? I am no longer taking medicine for Crohn's and continue to feel worse and worse, and have seen some blood in my stools again, though not consistently. Has anyone else experienced a similar situation? I know IBD can take a long time to diagnose, but I feel like it has now been completely ruled out, even though I may just be early in the disease? I would also like to reiterate that I was in fact on medication to treat Crohn's whenever I was tested in any way, other than my first scope.
Any advice, knowledge, or support would be appreciated.
As a kid, I was never super healthy. I always had problems with my gut (lactose intolerant, H. Pylori) and suffered chronic sinusitis, even had surgery to try to help with it. I'm also a bit of an anxious person, though nothing that I've had to have treated, just travel anxiety, nervous pees, all that jazz. I did see a therapist as a little kid who basically just said I'm a control freak and need to chill ;]
Fast forward to my freshman year of high school when I began to get some debilitating stomach cramps that resulted in ill-timed, often embarrassing trips to the bathroom. Eating aggravated these even further, and they kept getting worse. I mentioned this at a regular visit to my pediatrician's nurse practitioner my Junior year of high school, who put me on muscle control medicine for IBS, as she had had a similar situation at my age with that diagnosis.
2 months later, that medicine was doing nothing for me, and I continued to feel sicker, with some intermittent vomiting. I was sent to a pediatric gastro, who suggested therapy to begin with. I opted not to and go straight to physical tests, as I knew from experience what it felt like when I had a stomach ache from anxiety and this was certainly not that. I began a series of tests, starting with a scope.
This endoscopy/colonoscopy showed "cobble stoning" in the back of my throat and petechiae in my stomach, which the doctor attributed to GERD (explaining my struggles with sinus infections) and some H. Pylori, but there was no definitive evidence of Crohn's or Colitis.
I was then hospitalized for severe pain in the lower left side of my abdomen, had tests done at the hospital, and nothing was conclusive.
My GI ordered a barium test, blood work, ultrasounds, pill cams, stool samples - you name it. Nothing showed any sign of disease, but I certainly was not feeling well. At this point, with the pain, I was put on Apriso (mesalamine) and Budesonide. I also had a scrip for Zofran because of GERD related nausea.
Then came the only time I bled with a BM - in a McDonald's, in the middle of nowhere, on the way home from a camping trip. I showed the picture to my actual doctor during a rare visit to see her personally and she put me on Methotrexate on the spot and began to suspect Crohn's. I lasted 8 weeks on Methotrexate before my busy life as a high schooler made the side effects (fatigue, hair loss, rapid heart rate, nausea) intolerable. We were then back to square one.
After deciding to end Methotrexate, my doctor ordered new tests and put me back on the doses of Budesonide and Apriso I was on before. I had another endoscopy/colonoscopy which came up with severe erosive gastritis in my stomach and throat (I have vocal nodes, which is semi-detrimental to someone in performing arts) and proctitis in my rectum. This was treated with antibiotics (to rule out bacteria, as the petechiae was present all throughout the tested area) and a round of mesalamine enemas. As before, biopsies were taken, as my entire digestive tract seemed inflamed and irritated, but not damaged. All the biopsies came back negative.
My doctor sent for one more blood test - it was sent to a lab called Prometheus, anyone heard of it? This too, with much disappointment, came back negative. The GI's nurse practitioner again brought up physical and emotional therapy, saying "I don't know why the methotrexate helped you. You don't have anything as far as we can tell" and I reluctantly agreed, as I felt there's nothing else I can do. She is convinced that my stomach aches are caused by anxiety, rather than causing me anxiety (which is what I am sure of - I am so afraid of being in pain). I requested to be taken off of the Apriso and Budesonide, as I see no reason in being treated for a disease my doctor does not think I have.
Today I went to my chiropractor (started seeing her for an unrelated rib displacement) who had previously drained my gallbladder, giving me much relief. However, she refrained from doing anything else so as not to interfere with what my GI was doing. With the blessings of my GI's nurse practitioner, she did a "deep tissue abdomen massage", essentially working on any places where I had adhesions. Every place where I had severe cramping was terribly irritated and was an adhesion sight.
So, my question is, am I crazy? I am no longer taking medicine for Crohn's and continue to feel worse and worse, and have seen some blood in my stools again, though not consistently. Has anyone else experienced a similar situation? I know IBD can take a long time to diagnose, but I feel like it has now been completely ruled out, even though I may just be early in the disease? I would also like to reiterate that I was in fact on medication to treat Crohn's whenever I was tested in any way, other than my first scope.
Any advice, knowledge, or support would be appreciated.
