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So Now I'm Actually Praying For Pouchitis!

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Posted 7/13/2015 5:43 PM (GMT 0)
So some of you here will be well aware of my trials and tribulations since takedown in November. Today I saw one of my surgeons registrars (actually says in my notes I'm to see the surgeon himself ONLY, but there you go). He asked me if I had any mucous or bleeding, and I said I'm not sure, sometimes the water is tinged red, but there's no blood on the tissue and I thought it was just stuff I had eaten. Well, he did a digit exam and said there does appear to be some mucous and bleeding in the pouch. So the long and the short of it is, I now have a pouchoscopy scheduled for August the 6th, and am praying it's pouchitis, so that I will finally have a treatable diagnosis, hopefully resulting in a resolution and a pouch I can start living with, not just existing!
Posted 7/13/2015 10:53 PM (GMT 0)
Hopefully that's what it is because it's usually an easy fix. Too bad you have to wait all the way to August 6th though. That's a long wait.
Posted 7/13/2015 11:08 PM (GMT 0)
Marianne; such is life here in the UK with the NHS. That being said, I don't have to worry about bills/insurance etc. I've been putting up with this for so long now, another three weeks or so is nothing really anyway. This is only the second time in my life I've hoped to find something wrong, the first being my UC diagnosis, twenty years ago this year.
Posted 7/13/2015 11:12 PM (GMT 0)
Is this the first time you've actually had the pouch looked at since takedown? I know you said you had problems with strictures in the beginning, right?
Posted 7/14/2015 12:03 AM (GMT 0)
I am surprised they wouldn't give you an antibiotic to try to get in managed in the meantime. I really hope you get good news and something that's easy to treat so you feel better :)
Posted 7/14/2015 5:20 PM (GMT 0)
I'm willing to bet your consultant does not think it is pouchitis. In the UK it is pretty standard procedure to prescribe antibiotics before doing a scope when the symptoms indicate pouchitis. He probably suspects cuffitis, blood is much more common with that than it is with pouchitis and the treatment is quite different.

Peter.
Posted 7/14/2015 5:56 PM (GMT 0)
Wow, that's a strong statement! Your post title- but I get it, seriously. It would be very nice if there is a simple solution for you- I'm pretty curious to see what the scope shows, actually. You must be too- and afterwards, you can really have a clear picture of what's going on. Good luck, hope these next few weeks go quickly!
Posted 7/14/2015 8:31 PM (GMT 0)
Ryan, yes, this will be my first scope since takedown. Until now, the only "exams" have been by digit.
notsosicklygirl, the registrar didn't want to use antibiotics before a proper diagnosis. Very understandable considering the problems developing with antibiotic resistance and I commend him on this.
Peter, I'm just hoping for a firm diagnosis with a treatable outcome.
Eva, yes, it's a strong statement and I don't mean to seem flippant. I've had nothing but trouble since takedown and would just like something tangible found, that can be sorted out. Failing that, at least if nothing is found, I can start making my peace with the fact that maybe this isn't going to work out and seriously contemplate a return to ostomy.
Posted 7/15/2015 12:58 PM (GMT 0)
my thoughts exactly! You deserve some concrete evidence as to what is going on internally, & only then can you make a decision re. moving forward.
Posted 7/15/2015 10:56 PM (GMT 0)
Eva, my real fear is that nothing is found and I'll have to start thinking about going back to an ostomy. Oh well, what will be, will be, right?
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