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11 February 2013 @ 05:45 pm
a bad night.  
 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.

 

 
 
 
Diane: Bunny Standingmissdiane on February 12th, 2013 02:19 am (UTC)
Aw honey *HUGS* I hope that the honey does some good and that one of those other first two options become available.

My crohnie friend Michelle that I worked with is having a good deal of trouble lately herself and I wish there was something I could do to help
addyit: come to addyaddyit on February 12th, 2013 04:12 am (UTC)
i don't know if i would mind having a bag temporarily. i think part of the reason everything gets so funky is due to it being USED, you know? but i think i'd prefer to avoid surgical issues if i can help it.
i did ask for the first option to begin with. he's going to hook me up with a hematologist, who can handle those medications. this body of mine is getting to be an issue, but it IS keeping doctors employed.

what's her issue? needing to go all the time, pain, or both? or does she say?
it is a weird line to tread. she might take offence since you don't have crohn's- it does depend on what her issue is, and what she uses. does she say? then again, it IS nice that people pay attention and try... the problem is, people don't know what to do or suggest. i only get away with telling another crohnie what to do BECAUSE i know what it's like- he's even said, if it was his sister he'd have bristled and got angry, but since it was me, it was different. it's like telling people on prednisone to drink mint tea to fall asleep at night. it's a nice thought, well-intentioned, but the possibility of it working is laughable.
maybe telling her about the crohn's online communities on LJ. they're pretty good. a crohnie present might be nice, but there you have to tread the line, too. to remind them of it might hurt them, since they do all they can, all the time, to not SHOW it.
let me know what her issue is, if she mentions anything, and i'll suggest something.

Edited at 2013-02-12 04:12 am (UTC)
Diane: Bunny Standingmissdiane on February 12th, 2013 11:25 am (UTC)
My friend doesn't mind sharing with me. It's both, actually. She's been on low dose steroids for a while and has also done a few cycles of antibiotics. She's steadfastly refusing to have yet another surgery though she wonders how long alternative methods will work. She did have some luck with acupuncture so she might go back and try that again.
addyit: come to addyaddyit on February 12th, 2013 12:37 pm (UTC)
does she have lots of gut pain? heat helps for that. why not get her a heating pad, microwaveable, for her tummy for work?

i had good luck with immunosuppresants for many years. i'm still on imuran.

Edited at 2013-02-12 12:38 pm (UTC)
susanne_est_moi: TMNTsusanne_est_moi on February 12th, 2013 06:49 pm (UTC)
I'm so sorry :( *hugs*

I don't know if it helps to know, but a family friend of ours had a rare rectal cancer when she was in her 30s and will now have to use the bag for the rest of her life. She found after just a few weeks that she was able to train her body when to go, and rarely has to rely on the bag at all anymore.

*more hugs*
veganhothead: dead parrotveganhothead on February 12th, 2013 08:45 pm (UTC)
Facebook Scmacebook. I've stopped revealing anything meaningful there. Hey, I rarely post anything that isn't AR related.

Dear, dear Addy...I wish so much that this wasn't happening to you. I hope something works, and soon.

*a world of hugs*
caseytalk: mecaseytalk on February 13th, 2013 01:59 pm (UTC)
HUGS.

I hope something your doctor is proposing works. I can't imagine how miserable it must be.