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[personal profile] addyit
 well, the inevitable happened, and it has been happening over the last few weeks. 
the fistula reopened, and is now a hole. it's small, though, and weeps. 
it's been painful. the skin cracks, the perineum is raw, and i'm up to trying anything. 
i've used barrier cream to try to save the raw skin, flamazine to ease the burning, an ointment
to numb the sore areas, and zinc oxide cream to try to protect/repair. 

i know none of it will stop the disease, but i'm desperate to try to ease the skin. 
the bladder incontinence doesn't help. i need liners, and i can't change them all the time. 
and now, last night. 
i've had some bleeding (partly why i let my GI know, since any signs of bleeding are a definite
sign of recurrence of illness). that's been a few weeks now. 
i was half asleep when this happened. i had to wee, so i got up and went to the loo. groggy, 
i went to dry with some paper... and came up bright red. 
the toliet seat was smeared with bright red blood, as was the bowl. it looked like more than it was, i know, but i didn't
have my glasses on. 
it was either from the rectum or fistula. i think it was the fistula. 
it took a while to clean up. there was still blood there when i was in just now. 

it's been a long time since i passed that much blood, on its own, and fresh. i can still smell it. iron. 
it definitely wasn't menstrual blood.

it really made me panic. 

it still kept coming. i had to clean up a good deal later- one pair of knickers may never survive. 

i am at the point of trying manuka honey on the fistula. it's ideal dressing material, antiseptic, washes off easily, and stays put.  i have some that i use for sinus rinses, and i have application tips (so i don't mix the clean with the dirty).  

i know it's freakin' nuts. but that was a mini murder scene last night. 

but if 750mg of cipro for 3 weeks doesn't stop the fistula progression?

i am really out of options. humira and remicade isn't an option because of my lungs- neither is predisone. i was just reading over my options
my GI sent me. here it is:


1. There is experimental evidence that a blood hormone called GMCSF has been used in Crohn's disease with varying success. It is not an immunosuppressive medication but it is very expensive. I will likely need you to see a hematologist who use these medications more and may be able to find a way to supply this. 
2.  There is a new medication called vedolizumab which is a tested medication for Crohn's but it is not yet out on the market. Compassionate release might begin in 9 months which is a ways away. It is a medication similar to Remicade but it is supposed to be more gut specific. Potentially it still can cause problems with infections. 

3.  A temporary diverting colostomy has benefits in putting the perianal disease in remission. It sounds bad but it is tried and true. It has worked for many patients with bad perianal Crohn's. 

i think i just need a hug from a friend, be it crohnie or not. it's not something i can talk about too openly on facebook.
medical talk like this spooks people.



addyit: (Default)
My Crohnie/CF Appendix.

April 2015

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