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Ulcerative Colitis
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Posted 9/19/2010 5:00 AM (GMT 0)
Feeling so crappy for so long, just needed to vent to those who understand. I have been flaring since July and trying to deal with it with my prescribed meds - no luck. Called my GI at the end of August and the soonest appointment I can get is Dec. 13th!!!! Ridiculous!

So very, very tired. Feel physically run down like I do when I have the flu. Loosing so much blood that the toilet water is practically opaque. Up through the night with bloody diarrhea. Leaking a little blood throughout the day even without BM.

I have an appointment with my GP on Tuesday and am so hoping he can help. I am so sick and tired of being sick and tired. The worst part is, unlike with having the flu, no one wants to hear about you being sick when you have IBC because of the stupid taboos and stigmas. The minute the word "bowel", "colon" or "colitis" are uttered people seem to get all uncomfortable and change the topic.
Posted 9/19/2010 5:21 AM (GMT 0)
ugh, i know how u feel so vent all u want! :) i've been flaring on and off since march... each time i try to taper the prednisone i get to just under 10mg then have to go back up again... seriously, it's annoying.
i really hate prescription meds and want to get off them asap... i've heard good things about the scd diet so im thinking of giving that a try!

oh and about your GI appt... leave a message and see if he/she will @ least talk to you over the phone so u dont have to wait til december... good luck
Posted 9/19/2010 8:52 AM (GMT 0)
Hi...venting is good! I get you on the butt-taboo!

I'm not understanding why you're only on salofalk suppositories if your UC is extended into the sigmoid. Are you on or do you have any oral mesalamine (5ASA) meds such as Asacol? Were you on any during your previous uses of meds?

It's great you can get in to see the GP....see you you can get a script for Asacol and the Salofalk retention enemas to hold you till you see the doc in December.

You could possibly use some fibre supplements to help bulk up the stool a bit, maybe easing some of your bms...as well try some probiotics.

Let us know how your appointment goes.

q
Posted 9/19/2010 3:18 PM (GMT 0)
Q - I don't get it either!!! It seems ridiculous to me that I am only on rectal meds and such a low dose at that!   I am hoping that I can convince my GP to put me on some oral meds.  I have little to not faith in my specialist and will be asking my GP for a referral to a new Gastroenterologist. 

Thanks for listening....  It really does help to vent.

Posted 9/19/2010 4:40 PM (GMT 0)
I'm so sorry you're feeling so sick. I was in a horrible flare from June until about 3 weeks ago. I finally had to get on Prednisone. I saw some immediate effects from it, but I have just started feeling normal in the past week. Now I am starting to taper, and so far, so good. I know how scary the bleeding can be. I would for sure ask your doc about getting on some oral meds. I would put prednisone as a last resort, but you should be on some sort of oral mesalamine. Let us know how it goes, and take care of yourself!
Posted 9/19/2010 8:09 PM (GMT 0)

Bellydonna said...
Called my GI at the end of August and the soonest appointment I can get is Dec. 13th!!!! Ridiculous!


It is time to switch GIs.
Posted 9/19/2010 11:21 PM (GMT 0)
why are you not going to emerg? You probably needs fluids and be seen by a doctor, who will contact your GI doctor.
Posted 9/19/2010 11:35 PM (GMT 0)
I was the way you are about a year and a half ago except I had no insurance. I used rectal meds only at the time and eventually my symptoms grew to be too severe for rectal meds. I had to pay out of pocket to see a GI and she prescribed me oral meds (asacol) and I was able to get out of my moderately severe flare pretty quickly. You should definitely get in to see someone asap. You shouldn't have to suffer like this for such a long time. Definitely get a referral for a new GI when you see your GP. My GI will always see me or at least speak to me on the phone and prescribe me something if necessary. You need a GI that you can rely on if the worst happens. Goodluck.
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