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Ulcerative Colitis
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Posted 4/9/2013 9:12 PM (GMT 0)
As some of you may remember, I've been flaring since early Feb. Still, at most 6-7 bathroom trips a day so manageable, but definitely not great. Lots of Blood, Mucous, Diarrhea (first time that's an issue in 7 years UC), cramps, gas...

My regular GI has not been available (he is out sick himself... ) SO I finally got refereed to an IBD specialist helping out. I will be going for a colonoscopy April 18th. He didn't want to change my meds until he takes a look and is even a bit suspicious from my 1st colonoscopy results (7 yrs ago) that perhaps I have Chron's instead.

The past 4 weeks however I've been feeling worse and worse, Had a bit of a cold, not bad but the cough is still lingering. 3 weeks ago started getting sore shoulder/neck and the front area where clavicle meets sternum is sensitive to touch (no knows injury) and thought it was from coughing. That soreness/stiffness/achy-ness has spread to my whole upper torso, especially upper back/shoulders. My head, arms and legs feel fine but my torso feels like it's been run over by a truck!

I am still hoping it is just tension related to being stressed over flare and protecting my lower body while coughing (as i feel like I've been kicked in the gut continuously) but it is starting to really worry me. Plus around that same time I developed external hemorrhoids for the first time in my life. Been treating with anusol and prep H - they are ok but also not getting better.

I just feel like my body is giving out on me. I've been managing pain with Tylenol and heating pad, but the length of this feeling crappy is starting to really worry me and I wonder if there is something more going on! .. I finally booked an appointment with my family doct. for this Thursday am although i feel silly cause i can't pinpoint my 'problem' other than generally feeling like crap! Also booked a massage (1st one that is not for just relaxation) for Friday and i have the colonoscopy for next Thursday... hoping to get some answers and some relief soon, worried some other issue is at play here as none of this has ever happened with my UC before...

Anyway just need to vent a bit I guess, If anyone has experienced any similar symptoms I'd appreciate any feed back you might have. I've manage to keep working, other than lots of time off for appointments but working with preschoolers while feeling like this just sucks.

Thanks for listening (reading.. )
Posted 4/10/2013 12:17 AM (GMT 0)
Every case is different.  For me, when all else fails, a 40mg or 60mg regimen of prednisone usually calms things down.  I'm lucky as I've always seemed to tolerate it well. 

I've also recently become a believer in VSL#3...ask your doc to prescribe the prescription dose.  Oh, and I try to limit bread, cereal and grains...stick to more meat, fish, fruits, and vegetables.

Are you on Rowasa enemas?  I bought an inversion table so I can administer on my side, and then get on the table.  Hanging upside down (follow the instructions for the table) really seems to work.  It distributes the enema further into the colon (sometimes I take 2), and after 5 minutes or so, I simply walk to bed and it stays in all night.

Hope this helps at least a little bit.  Good luck.

Posted 4/10/2013 12:55 AM (GMT 0)
Your description of feeling worse and worse should be tested for infection such as C.dificile or other infection possibilities. You shouldn't wait for your colonoscopy for this.
When did you last have other blood tests for iron levels and B12? Also could be a contributing factors to your ill health.

You may need a GI who is a little but more on the ball and actively investigating your symptoms. C-scope is not the only tool in their box.
Posted 4/10/2013 1:30 AM (GMT 0)
right before this recent flare (the same week actually- 1st week feb.) all my blood work came back great! but things got worse and worse not helped by the fact my GI was unavailable. I tried getting steroid enemas from both my fam. doc and this new IBD specialist.. but both hesitated without scoping again for some reason...

Its more the overall unwellness that is worrying me.. if it's part of the UC then I know it will settle once i can treat better - IBD specialist has mentioned Imuran and is also going to do a CT scan to check small bowel.

Does anyone else have this all over achyness? like a flu without typical flu symptoms?
Posted 4/10/2013 4:49 AM (GMT 0)
I had the overall achy mess at times with my IBD as well as exhaustion. It may be UC but since this is not typical for you I thinks it's great that you at seeing your primary.

Don't feel bad about seeing the doctor. You have a chronic issue that can affect many facets of your overall health.
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