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Crohn's Disease Forum » Surgery » Stoma Subforum » A bit terrified


02-25-2015, 11:22 PM   #1
Nyx
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A bit terrified

Hi everyone!

I haven't been on much as I've been having some major medical problems. It started off with an infection in my vagina and it's turned into a major Crohn's flare. The weird part is that it's not in my digestive system at all. I had a colonoscopy last month and all is clear! The problem is in my stump. My body has taken to eating itself it seems. The doctors are stumped at what to do for me as my skin just keeps eroding. This might be TMI, but the skin of my inner labia is gone, my urethra is basically hanging out, and the skin around my anus is eroded. I've been on antibotics for over 3 months, and the infection is almost gone (yay!), but they're not sure what caused the problem in the first place. Normally Crohn's is irritated by fecal activity. I don't have that in my stump. So, after many appointments with my GI, dermatologists, surgeons, urologists, and gynecologists, I'm starting Remicade tomorrow. I'm a bit scared, because if it doesn't work, then what do I do?? I'm hopeful, but terrified at the same time.

I'll try and keep you all posted, and let you know if I wind up in a medical journal somewhere - my GI said she's never seen anything like it in her 20 years. She's taken pictures and is documenting every step of my treatment and progress.

Crohn's is fantastic, isn't it?? Sigh.
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02-25-2015, 11:25 PM   #2
FrozenGirl
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Aww that sucks you are having such crazy issues, but I am glad you are starting Remicade. I hope it works for you. (it works awesome for me, however I have different issues)
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02-25-2015, 11:29 PM   #3
Nyx
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I probably should have mentioned that I have multiple fistulas as well, so the remicade will hopefully clear those up as well.
02-25-2015, 11:45 PM   #4
VeganOstomy
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That sounds terrible I'm sorry that you're having those issues, and I'm sure the frustration of not knowing what the cause is doesn't help with stress!

I do hope that you'll have success with Remicade! Keep us posted
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02-26-2015, 02:11 AM   #5
lenny
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I'd be terrified, too. I hope the Remicade kicks it's a$$.
02-26-2015, 04:37 AM   #6
Grotbags
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Oh you poor thing
That all sounds horrible.
Won't they remove the stump, or are they waiting for everything to calm down ?.
Hope the Remicade works .
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02-26-2015, 07:47 AM   #7
Nyx
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Oh you poor thing
That all sounds horrible.
Won't they remove the stump, or are they waiting for everything to calm down ?.
Hope the Remicade works .
I have to get everything under control before they can do surgery...if they don't it will never heal.
02-26-2015, 08:47 AM   #8
2thFairy
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That is baffling! I'm curious what the doctors will find out as time goes by. My heart goes out to you!!
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02-26-2015, 10:30 PM   #9
Nyx
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A bit of an update...I had my Remicade infusion today, even though I have the cold from hell. It went well, I had no side effects at all (so far anyway) and I go for my second loading dose on March 12. I'm hopeful that this is going to work! Thanks everyone for your moral support...it's much appreciated!
02-26-2015, 10:33 PM   #10
Nyx
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Oh, and I also found out today from the pathologist's report on my biopsies that I have Crohn's in my skin in my peri-anal area. That seems to be the problem. It's very rare (lucky me!!!) and they're not sure what treatment will work the best. Again, I'm hopeful Remicade will be the miracle drug that it's purported to be.
02-27-2015, 12:32 AM   #11
glum chump
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Geez, you're having a bit of a time of it, haven't you?!

I'm supposed to have my rectum and anus removed soon, too, but at the moment, am caught up in a similar situation to you. It started a year ago with a couple of Bartolin's cysts in my vaginal area and a bunch of fistulas in my rectum and peri-anal area. I was gonna get the surgery then, but got pyoderma in the peri-stomal area which became a bit of a concern (the dermatologist and GI were playing hot potato with the pyoderma!). From there, lichen planus, which is all over my body. The pyoderma is slowly healing, but I'm getting more cysts in the vaginal area, along with vaginal fistulas and some weird lesions (seeing a gyno on the 10th). All of which is to say that, like you, my digestive tract is clean as a whistle, but all the rest of it is Crohn's-melodrama.

The pyoderma ate away some of the skin at the peri-stomal area which makes it tough to have the flange attach to the skin and I get lots of leaks. Like you, the doctors find it all to be a bit of a head scratcher.

I have my fingers crossed that Remicade performs its miracles with you and you don't get a chance to be written up in a medical journal (although I'm sure you'd look fabulous in it!...do medical journals have any kind of centrefolds??).

Kismet
02-27-2015, 12:39 AM   #12
Nyx
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@Kismet...that centerfold would be terrifying and would require gallons of eye bleach...lol
02-27-2015, 10:41 AM   #13
lenny
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cure cure cure cure cure cure cure it it it it it it it it it it it it now now now now now now now NOW!
02-27-2015, 11:20 AM   #14
D Bergy
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I have a suggestion that either will work spectacularly of will fail miserably. It is an alternative treatment I use personally, so I have reason to believe it might work.

There are two pathogens that I am aware of that can cause severe tissue damage, but only one that I am aware of that is Crohns related, and affects the skin.
That pathogen is MAP.

I use specific frequencies that reduce MAP using a frequency device commonly known as a Rife machine.

These devices are out there, but you would have to find one in your area you can use for a couple of hours. Some Chiropracters, and alternative minded health care providers either have these or know who does.

These are one set of frequencies that I use that are in the public domain.

642.2, 700.9, 769.6, 803.4, 8300, 818.5, 1001.2, 2471.3

All frequencies are in Hertz.

I would find a machine to use once. I would run each frequency for twenty minutes, either all at once, if the machine can do that, or one at a time.

The worst that can happen is nothing. If it is MAP, I would expect substantial improvement in a few days.

I would not change anything else as far as current treatments.

If it works on a hard case such as yours, we would have something quite useful for everyone. If it fails, and it very well could, I will know I have more work to do.

Just my two cents. It sounds horrible, I hope you get a solution.

Dan
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02-27-2015, 06:12 PM   #15
glum chump
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@Kismet...that centerfold would be terrifying and would require gallons of eye bleach...lol
So true!

Wishing you better health...
02-28-2015, 12:05 AM   #16
DustyKat
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Oh my goodness Nyx! I am so very sorry to hear of all you have been going through.

You would have to think the problem was one of the necrotising skin conditions or other skin conditions associated with IBD. With Crohn’s (UC is different) things like PG run independent of disease activity so that would link up with clear scope result.

I hope the remicade works wonderfully well hun and you are soon feeling fab and well on top things.

@glum chump, I hope you too find relief from all you are going through! Good luck!

Dusty. xxx
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02-28-2015, 06:49 AM   #17
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Good luck Nyx. I hope the Remicade works & you get some relief very soon
03-02-2015, 12:51 AM   #18
Nyx
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Spoke a bit too soon about having no side effects from the Remicade. Friday was a write-off for me. I was achy, and just worn out. But, if that's going to be the extent of things, I'll take it!! Also, on a positive note, the pus from my infections and fistulas has decreased dramatically. I suppose I'm being a bit optimistic, but I think it's really working already!! Thanks everyone for your support and ideas I'll keep you all updated. My next Remicade infusion is March 12.
03-13-2015, 11:44 PM   #19
Nyx
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I had my second infusion of Remicade yesterday and it went really well, besides the nurse having to poke me twice to find a good vein (not good news for the girl with the needle phobia...lol). I was a bit achy today, and kind of tired, but my fiance was here to take care of me so it was all good . Still seeing improvement in my output in my rear end, and the stitches in my biopsy came out today. So, all in all, a good day
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