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UC for 7 yrs, all of a sudden VERY confused

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Ulcerative Colitis
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Posted 7/7/2010 6:56 PM (GMT 0)
Hello everyone! It's been a while since i last dropped by. I am in need of some advice from u all.

I was dx w/ UC after the birth of my first child. Tried all the different meds, they didn't work, blah..blah....until i got on to 6mp.  I hit a nice remission for about 1 1/2 yrs. Then i got pregnant w/ my second child.  When i went into labor at 25wks, i stopped all my meds incase i had a micropreemie who needed me to breastfeed (which i was told i could not do on 6mp). 

Fast forward 3 yrs, i have not gotten back on meds since having my second child. I have not had any flares (as defined by blood, mucus). I have had alot of trouble with chronic direhea which lands me in the hospital due to dehydration.  EVERY time, after CT, bloodwork, stool samples, i am always told the same thing, "It is not a flare of UC", maybe a gastritis, ect. 

Today i woke at 3am, and have been in the bathroom  no less than 25 times today.  I saw my GI today and was really pressured to get back on my meds. It makes no sense to me if i am not having a UC flare, then why the meds???   They said today that since i am showing systemic symptoms (rashes, joint pain, ect) that they believe that i have involvement of the right side of the colon (which i was originally dx w/ left sided uc.)  And that since i have only had flex sig in the last two yrs, that we must be missing something.

does anyone see this as right?  I am on a host of meds, including a HRT (hormone patch) due to a total hysterectomy 18mo ago.  I can not imagine how bad Pred (40mg) is going to make me feel since im still soooo out of whack w/ my actual hormones.  I really do not want to go back on meds since they can't prove to me that it is indeed UC and maybe not just my immune deficiency attacking my GI track....

what would u all do, are there any questions u can think of for me to ask my doctor? I don't think i have ever been this confused about my UC than i am now.....Thanks for reading this!!!

Posted 7/7/2010 7:03 PM (GMT 0)
Has a colonscopy been suggested?
I'm not sure what diverticulitis is, but it causes D and all those things would require a scope to diagnose (or rule out) I think.

What about a food allergy or sensitivity?
Sorry you are suffering so, very frustrating for you!
Posted 7/7/2010 7:10 PM (GMT 0)
yes, today they set me up for a colonoscopy on monday, my last one was two yrs ago.
Posted 7/7/2010 7:18 PM (GMT 0)
Gosh, I really feel for you! I am sorry you are having such problems, and I hope the scoping provides answers.
Posted 7/7/2010 7:20 PM (GMT 0)
Ask if they can test you for celiac disease while doing the scope? Just another thought.
Posted 7/7/2010 7:28 PM (GMT 0)
I have been tested for Celiac when i was first dx. Would that warrent a retest?
Posted 7/7/2010 8:09 PM (GMT 0)
Probably not then, but I don't know for certain.
Posted 7/7/2010 8:32 PM (GMT 0)
I had to mucous and blood when I had my first flare. It was just brown liquid twenty times a day.

But it was indeed a flare for me.
Posted 7/7/2010 8:44 PM (GMT 0)
When you went to the hospital, did an actual GI see you? Personally to me it sounds like a Uc flare but the scope will tell the tale.
Posted 7/7/2010 8:55 PM (GMT 0)
Red34, yes, everytime im at the hospital, i get admitted for usually about 3 days or so to calm things down, and my GI's office see's me there. Last time i was in, was in Feb of this yr, and the GI said it was not a flare, going on CT and flex sig.
Posted 7/7/2010 9:14 PM (GMT 0)
25 times ? Dont you need to be in a hospital ? I know I was.
Posted 7/7/2010 10:18 PM (GMT 0)
i thought it was strange that i was not admitted. Todays GI visit did not go well, i started w/ a new physican assistant, who came in Guns A Blazing, just pounding me about the meds, and made it really clear that i HAD to start meds again.

I have usually just gone to the ER myself, but w/ two kids at home and a guilty conscious about being sick all the time, i just don't want to go unless im dying....Things have slowed down, i have only gone 4x since i got home from the GI (at 2pm) so, 4 hrs now.

Anyways, thanks so much for responding everyone. It is good to know i don't have to suffer this alone.
Posted 7/7/2010 10:35 PM (GMT 0)
My first thought was full scope and maybe an endoscopy too.  They do it at the same time and maybe find the answers that way.

Good luck!

ElaineNY

Posted 7/8/2010 7:58 AM (GMT 0)
UGGGGHHH, well, i might just be dying

It's nearly 4am here and i have been in the bathroom 3x in the last hour. My legs are weak, my stomach is in pain (awaiting surgery for possible adheasions) and my rear end feels like im passing razor blades every time i go.

looks like i will be headed for the ER and a horrible 24-48 hrs stuck on a bed in a hospital hall way before i even see a doctor. (Thank you Miami)
Posted 7/8/2010 8:26 AM (GMT 0)
oh honey I'm so sorry. We all have been there. I hope they figure things out quickly!!
Posted 7/8/2010 12:12 PM (GMT 0)
That stinks! :( Well if you went to the hospital, hopefully they can slow things down for you and get you feeling better......hang in there!
Posted 7/8/2010 2:39 PM (GMT 0)
That's why I never go to the hospital. I would rather be taking in steroids and fluids and feeling miserable at home.

Maybe you should do a few days at a higher dose of Prednisone...even though I know you don't want to take them at all.
Posted 7/12/2010 7:14 PM (GMT 0)
Hello all,

Im home now, spent 3 days in the hospital.  As usual everything showed up normal. Thankfully a GI came into the ER to see me there. He is from the pratice i use, but i have never met him before. He completely agreed with me regarding not taking meds unless we prove it's UC acting up.

So, i was admitted and given fluids, nausea and pain meds, and bowel rest. The next day the GI came in and said that the blood work that was done in the office showed positive for CMV infection (a viral infection), so he ordered a colonoscopy for the next day. They took multiple areas to sample and remarked that my colon looked good as far as the UC goes.  they can not start me on antiviral meds unless the colonoscopy shows CMV in the colon, so now i just wait till the get the pathology back.

The bathroom trips have just about stopped tho i am feeling very rundown, so, just trying to rest, keep hydrated and eat well.

thanks to all of u for ur advice and support!!!!

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