- Location
- pennsylvania
Hi, my name is Jim and this is my story. I'll try and be brief, but there's a lot to tell. I found this forum while searching for answers that my doctor could not provide. My story is mainly about my misadventures within our medical system. I was diagnosed with Crohn's in Jan. of 2005, after several years of severe bouts of gut pain. My family doctor finally decided to send me to a GI doc for a colonoscopy. It was not a good experience,as he seemed to be in a hurry and was not very pleasant. He found nothing wrong. The gut pains persisted for a couple more years until the worst one caused me to visit the ER, as I was puking up green stuff. I was admitted on a Friday, and finally got to see a real GI doc on Monday. He said he would have seen me over the weekend, but no one called him.
Upon discharge I was told to call his office for an appointment. When I saw him he set up a date for a colonoscopy. That's when the Crohn's was finally diagnosed. He put me on prednisone and Asacol and everything went fine for several months until I ended up back in the hospital. Another colonoscopy with a baloon dilation because my small bowel had a "pinhole" stricture. I ended up having surgery in Jan. 2007.
At the pre-surgery consult with the surgeon, he was unsure why I was there, as no one had sent him my records. The surgery removed the part of my gut that absorbs some vital nutrients like B12, vitamin D and other good stuff. Somehow I was never informed about this, and about a year later I ended up seeing a Neurologist for balance (ataxia?) issues and cognitive issues. Bloodwork found severe B12 and Vitamin D deficiencies which caused lasting damage. After the surgery, the Crohn's settled down a bit but never really went into remission. My doc tried me on a succession of different meds, Pentasa, 6-mp, Remicade (bad reaction), Cimzia (bad infection). All this time I was still on prednisone as "maintenance therapy". Unfortunately, no one informed me of the dangers of long term steroid use, and I am still trying to get off of it, with little hope of success.
Sometime after the surgery, I started having flu-like symptoms about once a month. Body aches, brain fog, extreme fatigue and other stuff that would land me in bed for several days at a time. Over time this condition would happen more and more frequently until now when I'm getting it every other week and sometimes more often. Twice in the last two weeks. My GI doc says it's nothing to do with Crohn's. I've seen four different specialists at Cleveland Clinic and gotten four different answers. "probaly Crohn's related" "it's the prednisone, get off the prednisone" "possibly a mood disorder" "I don't know". This condition is not in their textbooks, so they don't know what it is. And no one seems willing to dig deeper to find out. This is the main reason I am here. I can't be the only person on the planet with this. I was hoping to find someone who experiences the same issues, and hopefully find out what it might be. If this is the wrong place to ask this, please direct me to the proper part of the forums.
I feel like I've fallen through the cracks of the medical system, and am getting very discouraged......I'm glad I found you, and I hope to be able to contribute, even in a small way.
Upon discharge I was told to call his office for an appointment. When I saw him he set up a date for a colonoscopy. That's when the Crohn's was finally diagnosed. He put me on prednisone and Asacol and everything went fine for several months until I ended up back in the hospital. Another colonoscopy with a baloon dilation because my small bowel had a "pinhole" stricture. I ended up having surgery in Jan. 2007.
At the pre-surgery consult with the surgeon, he was unsure why I was there, as no one had sent him my records. The surgery removed the part of my gut that absorbs some vital nutrients like B12, vitamin D and other good stuff. Somehow I was never informed about this, and about a year later I ended up seeing a Neurologist for balance (ataxia?) issues and cognitive issues. Bloodwork found severe B12 and Vitamin D deficiencies which caused lasting damage. After the surgery, the Crohn's settled down a bit but never really went into remission. My doc tried me on a succession of different meds, Pentasa, 6-mp, Remicade (bad reaction), Cimzia (bad infection). All this time I was still on prednisone as "maintenance therapy". Unfortunately, no one informed me of the dangers of long term steroid use, and I am still trying to get off of it, with little hope of success.
Sometime after the surgery, I started having flu-like symptoms about once a month. Body aches, brain fog, extreme fatigue and other stuff that would land me in bed for several days at a time. Over time this condition would happen more and more frequently until now when I'm getting it every other week and sometimes more often. Twice in the last two weeks. My GI doc says it's nothing to do with Crohn's. I've seen four different specialists at Cleveland Clinic and gotten four different answers. "probaly Crohn's related" "it's the prednisone, get off the prednisone" "possibly a mood disorder" "I don't know". This condition is not in their textbooks, so they don't know what it is. And no one seems willing to dig deeper to find out. This is the main reason I am here. I can't be the only person on the planet with this. I was hoping to find someone who experiences the same issues, and hopefully find out what it might be. If this is the wrong place to ask this, please direct me to the proper part of the forums.
I feel like I've fallen through the cracks of the medical system, and am getting very discouraged......I'm glad I found you, and I hope to be able to contribute, even in a small way.