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This is the third time in 4 months that i have had a lot of bleeding and no other symptoms, besides being exhausted. My doc has been treating it as pouchitis. Have about three rounds of Flagyl he put me on predonoze for 6 weeks. I am on my last week of it it and the bleed came back this past Sunday. and I am still bleeding today.I called the doc on Monday am. and he wanted to wait to see me till the 27th of May, but I called him again yesterday saying that I am still bleeding and having to wear a pad as it is heavy like a period. and that I was concerned that we were missing something more serious. I haven't had bleeding issues like this since I was first diagnosed with UC almost 20 years ago.

 

So the nurse called me back this am and said that he ordered blood work and wants to see me either this afternoon or tomorrow. so my pushing finally worked, yet I feel guilty. I know someone has to push to figure it out, I do it for my kids and don't fee guilty, but I do when it comes to me.

 

Anyways, I am wondering if anyone has had this unexplained bleeding before and what it happened to be.   

Tags: symptoms, tests, Pouchitits, exhausted, bleed, Bleeding, UC

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Jan DollarJan DollarModerator, RN, retired

Yeah, I have had cuffitis bleeding, but not so much that I'd need a pad. It is always with a bowel movement. Plus, there are other symptoms like pouchitis (frequency, urgency, sensation of incomplete emptying). What you describe sounds more like constant bleeding. I'd be concerned that you have an eroded area at a small blood vessel. Maybe it need cauterization? I'm glad you are being seen soon. If you start feeling lightheaded, you should go to the ER, but does not sound that bad (at least not yet!).

 

Jan

Jan Dollar
Last edited by Jan Dollar
C canlafreMember

The doc just keep saying that is chronic pouchitis. They have now put me on canasas. as the Cypro and flagyl together started making me feel horrible.  I am having no luck my GI doc. Now he took a leave from the practice. So I am stuck with someone I don't even know. they can't get me in for three weeks. I just passed a colt today and they said to just keep taking the canasas, and they can't change my meds without anyone seeing me. So not helpful. I finally made an appt with Dr. Holubor at Darthmouth. They might be able to get me in for a second opinion in 2 weeks. I am so frustrated.  This is why I had the surgery, because nothing was working and the steroids were making my liver shut down. 

C
AW Angie WilsonMember

Be sure you are checking for anemia (I'm sure you are) - my sister went thru this with her pouch a few years back - finally they found a problem elsewhere - she had to get IV blood infusions and the entire thing scared her to death....but the good news it- after finally going to C. Clinic - she got it fixed and is doing great.  It is awful to have to start over with a new doctor - hate it when that happens...there was a period of time when I wrote it all down - typed it- and just handed my list to whoever I was seeing (GI, internist, surgeon, shrink) etc.  I could not tell the story again.  The exhaustion was so hard for my sister -who had 3 kids still quite young at that time - she powered through ..but looking back, would have probably done more for herself sooner.  Hard to put on brave face for your kids - but that's what mothers do.  I hope you get some answers and some relief soon.  Maybe the new doc will be better - sometimes that happens and I hope this happens for you.  So sorry you are going through this - thinking of you.

AW
GinLynGinLynMember

DON'T FEEL GUILTY! We are own best advocates. Think of it this way: you are helping them do their jobs properly and care for you adequately.

I echo Jan: I did have this type of bleeding once and it was a burst vessel which required cauterization (which didn't hurt, fyi). But do ask for an anemia check and do push to get to the bottom of this. Mine got so bad it required a week's hospital stay and a blood transfusion -- you don't want that!

Best,

Gin

GinLyn

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Tags: symptoms, tests, Pouchitits, exhausted, bleed, Bleeding, UC
Views: 394
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