Crohn's? Really?

Crohn's Disease Forum

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Joined
Aug 16, 2010
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Hi. 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, 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 a "shadow of a lung nodule) 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. (Should I post this elsewhere?) Thanks so much for listening.
 
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Hi Binkly :welcome: You have come to the right place and right thread. We know your sufferings, and as lot of us here a diagnosis can take long and tiring. Yes, flu like symptoms are the main feeling in the beginning of most diagnosis. Aches, neck, muscles, joints, tireness are all part of this wonderful disease.:frown:

Sorry you went through to much, and I know all the meds you are on. There is a study of pouchitis in the probiotics I take, and the same meds with the Xanifax which is a great combo and we dont get Xanifax here. Check out www. VSL3.ca or .com

Never worry about complaining here, and we are here to help you with our experiences, as there are many from all over the world and as young as babies to 70's here. Someone here can relate to your story. Welcome glad you are here! Hope you get get better soon!:thumright:
 
Hi Binkly, :bigwave:

I'm so sorry to hear that you are going through all this. :( I agree with what Jett has said and yes these symptoms could be Crohns. The fact that your inflammatory markers are raised naturally indicates that there is inflammation somewhere in your body and the bodies response to this will create many of the symptoms you describe.

I hope you stick around 'cause this is a great place for info and support and by all means if you have any questions or want to vent just fire away we don't mind.

Welcome aboard!

Take care, :)
Dusty
 
Hi Binkly, few would know better the possible symptoms of crohns than Jett. You've found two of the best there with Jett and Dusty so I'll just say welcome and hope you stick around!! Good luck!!
 
Thanks all for your support - I will definitely stay tuned to this forum! Since I have a script for lialda, maybe I should go ahead and try it along with the xifaxan. Maybe it'll help get the rest of my flu-like symptoms under control? I do take VSL#3DS, which I think helps intestinal matters. These other symptoms however are not responding to anything, and are becoming rather debilitating. Anyhow - thanks again for your welcoming thoughts!
 
Hi Binkly
and welcome

I have had thumping horrendous head and neck pains for a while now. There was a heartbeat in my head too, it was like the flu, I felt that my head was too big and heavy for my neck! I thought it was a brain tumour!
I have a thread on here called the osteopath, if you type it in search above.
I thought it was a Crohnie thing too, but it was Occipital Neuralgia, and I had 3 sessions with the osteo, and my GP gave me a months supply of Amitriptyline, and within days, the pains went!
just something to ask your GP about and ask for Amiltriptyline too, fab drug! It works by blocking pain receptors and it helps you to sleep too!
hope you find answers, let us know how you get on
lotsa luv
Joan xxx
 

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