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Crohn's Disease
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Posted 12/11/2017 7:40 PM (GMT -5)
Hey UB,

I am preparing for my appointment with my GI and CRS. Can you please tell me what you would like me to ask? I want to make sure I don't miss anything.

Hope all is well and you are feeling better!

Clo
Posted 12/13/2017 8:54 AM (GMT -5)
UB,

I hope things are going well for you. I am just checking in again. Please let me know how you are.

Clo
Posted 12/14/2017 7:43 AM (GMT -5)
Hi Clo,

Sorry for the delay.

My bowel is fantastic. But I'm in extreme pain from vulvodynia. I'm depressed and feel terrible. All plans canceled. Basically in a ball on the couch for the last week, unable to wear pants, undies etc.
Struggling, yet again to get help.

As far as CRS:

I'd like to know if they would consider doing a LIFT or FLAP to repair chronic peri anal abscess/fistula which I['ve had for 15 months. Several I & D's, failed setons. Drains and setons are no longer options. Abx haven't touched the infection, which is why I'd like the LIFT. as I understand it removes the infected anal gland. Will your surgeon consider doing a LIFT for a crohns patient with remission in bowel (Im afraid to even type the "r" word for fear I'll jinx it).

I can forward all tests, but have an MRI on the 30th that will provide the best info.

Thank you Clo, You are an absolute gem.
Posted 12/14/2017 7:51 AM (GMT -5)
I'm sorry about the vulvodynia, UB, that sounds horrible :/ I hope it gets better soon.
Posted 12/14/2017 7:55 AM (GMT -5)
Thank you Miranda. This is what started the whole RVF mess last Aug. So of course I'm dealing with PTSD too. Going to chiro today in hopes it helps and of course will call useless gyne....again.
Posted 12/14/2017 5:34 PM (GMT -5)
UB,

I can not imagine.... You are one tough little person. I am sorry you are going thru this.

I was concerned when you didn't answer...it is not like you..
I almost got in my car to head north...but I realized I didn't know where to go... It would be a bit like playing Where's Waldo...lol.. I would be driving around screaming UBTough... Can you imagine?

Hope that made you smile!!

I will ask next week when I go in.

Clo
Posted 12/14/2017 5:36 PM (GMT -5)
UB,

Holy crap!!! Just read up on it.

I hope it feels better soon!

Clo
Posted 12/16/2017 7:51 AM (GMT -5)
You'd need a passport there Clo!! Yes, I did laugh. Thank you!

In the last month I've had a ureaplasma infection, yeast infection and now UTI. In addition to vul. The vul was what alerted me to this entire fistula nightmare. So it's important to have these issues fixed, not just for the peri anal aspect but for my front end as well. More important seeing as I'm living with this. I think I may have a bladder fistula. MRI on the 30th will tell.
Posted 12/16/2017 3:26 PM (GMT -5)
UB,

These are all things I have not had. The Stelera is working for your bowels but you have these other symptoms. What did your GI say?

I have a passport....but please don't make me play where's Waldo...(I almost get lost coming home from the store...no sense of direction..)

I hope your symptoms are better today!

Clo
Posted 12/19/2017 7:47 PM (GMT -5)
UB,

Today I am not your hero... I tried to be but alas it is not to be this time around.

Went in to see GI specialist...I am stable. There are issues but I am stable....but he wants me to speak to the CRS about the fistulas....

My CRS is wonderful...but he refuses to discuss what he will or will not be able to do unless it is with the patient, he has all their medical records, and he has ran all the required tests he needs.

So we moved on to me...I have so much damage he is talking about surgery and reconstruction of the spenctor, RVF repair-without the "lift or plug" (refused to speak of them at this time...said they will not work-the fistula is far too large..and we are going to some IBD meeting to ensure we get as much information and help as possible.) And some other surgical corrections all done during this one surgery session. So things are up in the air... Will know more after January meeting.... Regardless...he was not discussing the lift or plug... So now we wait until after that big IBD synopsis....

Anyway...they said you can call Dallas Baylor Hospital or North Texas Colon and Rectal and speak to them directly.

I did get the feeling that they still would not make recommendations without full medical records...so many people are sue happy.... I can understand both sides...

Sorry my mission was not successful.

Clo
Posted 12/22/2017 8:29 AM (GMT -5)
Clo--- thank you. It was successful. I didn't expect a definitive response, just if they are open to it. As you know it's not even a consideration here. I will call them. Thank you! It's most generous of you.

How are you managing?
Posted 12/22/2017 12:26 PM (GMT -5)
Hi, UB!
You should look into my surgeon. He eats fistulas for breakfast!
He worked on me and on the wife of the hospital president, so his skills are well known. And he's delicate and considerate with patient feelings, which is rare.
Here's his twitter page!
:D
https://twitter.com/thirulakshman
Posted 12/23/2017 9:48 AM (GMT -5)
You are awesome gypsfp!! Thank you! Thank you!
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