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U B Tough how have things been going?

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Ulcerative Colitis
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Posted 8/17/2016 6:29 AM (GMT 0)
...with your fistula issue???
Posted 8/17/2016 1:53 PM (GMT 0)
Thank you for checking in.

I had a surprise visit wih CR surgeon. He wants to put in a seton drain. I've refused. Too many horror stories. Frankly, the pictures are gross/scary. I already suffer from medical trauma & body image issues due to PG. I can't do it.

The abscess is draining almost daily anyway. But GI won't start me on humaria until drain in. We are at an impass. As far as RVF no issues since Monday but he won't know unless he does an EUA.

I've asked for another appointment.

Bowel better but significantly struggling. It's apparent I'm sick:(.
Very weak, extreme fatigue, trouble reading/concentrating.

I started AZA last night..... This am I'm so dizzy I can't get out of bed.
Posted 8/17/2016 5:21 PM (GMT 0)
Oh what a bugger!!! I'm surprised in a way but if you're having fevers then that might be the reason he doesn't want to put you on Humira (not suppose to if you have an infection and fever present) so he must want to try and get it somewhat under control.

I hope it clears up for you and can be dealt with quickly!!!

Keep us posted (((HUGS)))
Posted 8/17/2016 5:46 PM (GMT 0)
No fever.

I just don't understand....other than surgeons like to cut. I think the surgery & walking around with an open wound for 3 months while pooping a minimum of 5-6 times a day is more risky than just getting me on humaria.
Posted 8/18/2016 2:38 AM (GMT 0)
I would assume the recurring abscess would be at the start of the fistula? Maybe... I'm not sure, but would they not be able to at least treat the abscess somehow? Then leave the fistula alone for now if if successful?

Did you ask about anything along those lines?

Also maybe write down some questions this time so you ask all the things you want and don't forget by getting caught up in the moment. Or hit record on your phone... to remember what all the GI said.

However I don't recall having an abscess in my case... so maybe the fistula originates from a different location?

------

And maybe you just need to try and eat some soup and such to get some energy. I forgot to mention apple sauce, bananas and chicken soup always helped me when I was very ill at the beginning. Gave me some energy.
Posted 8/18/2016 3:39 PM (GMT 0)
Agreed Mark. Will have questions ready. Also believe he should take the more conservative route & just deal with the remaining abscess.

These last 3 days have been better. I think all the remedies I'm shoving up my butt are helping. I sent u a poultice remedy yesterday....tried it last night & it worked! Woke to poop at 2am & there was more pus. I actually have no butt pain right now!!! Going to continue. But it's messy for sure.

It will take me a while to get my energy back....but yes I'm eating. Actually hungry.
Posted 8/18/2016 6:47 PM (GMT 0)
With no fever, maybe try and convince your GI to work with you and ask him to try you on Humira...there's no harm in trying Humira, I love that my GI works with me and doesn't just dictate to me what he's going to do with my health.
Posted 8/18/2016 8:14 PM (GMT 0)
Thanks PB. My situation is a bit confusing in that I have 2 GIs. I see the one I have a more fuller, real relationship with on Tues. I will be addressing this with him. Aside from being a great doc, he's one of my favorite people so I know at the very minimum he'll listen & work with me.

I heard from Humira ppl today. They are starting the insurance paperwork. She said it would be at least a month before I hear anything. IN the mean time IVIG on 29th & I keep up my anti-abscess protocol.

Thanks PB, you've been so kind. This disease has robbed me of friends, so it's nice to have virtual ones.
Posted 8/18/2016 8:23 PM (GMT 0)
That's awesome!!! It's so important that our docs work with us, I hope Tuesday brings you encouraging news....I'm in Canada as well (Alberta) and my GI's office set Humira up for me in a decent amount of time, hope yours gets done quicker than a month.

You're very welcome U B Tough! Sadly, we're all pretty familiar with how this disease can rob many aspects of our lives since it has no boundaries. I'm happy to have this place to come to where we know better than non-IBDers what challenges we go through daily. It's crappy circumstances for sure but at least we all have this bond with each other as a result.
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