Hi, I posted this is "My Story", but am looking for information as well -- so -- here goes --
I had my colon removed in '93 due to UC, and had a jpouch created. Did pretty well with that up 'til about 5-6 years ago, when I started having "episodes" where I'd get chills/fevers, headaches (terrible headaches), pounding heartbeat in the head, fatigue, flu-like symptoms. My current "episode", which has been going on for most of the year (!), off and on, now includes new, additional symptoms - sore neck glands(scary), burning eyes, EXTREME fatigue, aches all over, and worst - the pounding heartbeat in the head. I also have pouchitis symptoms during these "flares", which include increased diarrhea, leakage at night, urgency...
My colon surgeon usually treats me for pouchitis with levaquin (last scope indicated an inflamed pouch, but about 8" above the pouch, into the small intestines, was clear), but the other symptoms usually hang on. A prometheus test was done in '04, and apparently the results were "suggestive" of Crohn's. Now, my surgeon has diagnosed me as having Crohn's. I'm on maintenance xifaxan right now, and have orders for lialda if the xifaxan doesn't work in controlling what appears to be pouchitis symptoms.
On the other hand, my GP is trying, sorta, to find another source of infection, and runs blood-work (usually within normal, except very high CRP (89+) and high Sed Rate, has done a pelvic and chest Xray (showed aCT (pelvic was fine, awaiting chest results).
I wanted to ask you all - can the flu-like symptoms above (and now, sore neck glands and pounding heartbeat in the head) be symptoms of Crohn's? Although I do appear to have some GI symptoms from time-to-time, these usually respond to antibiotics, but the other flu-like symptoms are no longer responding. I feel like crap, it's hard to get to work every day, and just would like to know if anybody out there has symptoms like this and if they could actually be Crohn's. This whole year has been a bust for me because of these symptoms waxing and waning, mostly waxing. Thanks so much for listening.
I had my colon removed in '93 due to UC, and had a jpouch created. Did pretty well with that up 'til about 5-6 years ago, when I started having "episodes" where I'd get chills/fevers, headaches (terrible headaches), pounding heartbeat in the head, fatigue, flu-like symptoms. My current "episode", which has been going on for most of the year (!), off and on, now includes new, additional symptoms - sore neck glands(scary), burning eyes, EXTREME fatigue, aches all over, and worst - the pounding heartbeat in the head. I also have pouchitis symptoms during these "flares", which include increased diarrhea, leakage at night, urgency...
My colon surgeon usually treats me for pouchitis with levaquin (last scope indicated an inflamed pouch, but about 8" above the pouch, into the small intestines, was clear), but the other symptoms usually hang on. A prometheus test was done in '04, and apparently the results were "suggestive" of Crohn's. Now, my surgeon has diagnosed me as having Crohn's. I'm on maintenance xifaxan right now, and have orders for lialda if the xifaxan doesn't work in controlling what appears to be pouchitis symptoms.
On the other hand, my GP is trying, sorta, to find another source of infection, and runs blood-work (usually within normal, except very high CRP (89+) and high Sed Rate, has done a pelvic and chest Xray (showed aCT (pelvic was fine, awaiting chest results).
I wanted to ask you all - can the flu-like symptoms above (and now, sore neck glands and pounding heartbeat in the head) be symptoms of Crohn's? Although I do appear to have some GI symptoms from time-to-time, these usually respond to antibiotics, but the other flu-like symptoms are no longer responding. I feel like crap, it's hard to get to work every day, and just would like to know if anybody out there has symptoms like this and if they could actually be Crohn's. This whole year has been a bust for me because of these symptoms waxing and waning, mostly waxing. Thanks so much for listening.
