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05-08-2006, 12:44 PM   #1
Tami Lynn
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FISTULAS - Questions/Advice/Help....???

Ok guys... I need some help.

My 16-year-old daughter, Alyssa (who was dx with CD last summer) has been complaining about some strange things lately.

She has been complaining about a type of aching/throbbing pain in her bottom area. She says it goes from her groin area (upper-inner thigh) to under her butt cheek. She says there are two spots that hurt and almost like what she would describe as a spider bite or sore, but its under the skin - We can't see anything on her skin. She has also been complaining about feeling bad in general (which is a common complaint with CD anyways)

I was wondering if anyone could clue me in or tell me more about the beginning symptoms of a fistula, as that is my main concern.

If any of you have experience in this area and have any advice to share, PLEASE respond or IM me. AIM & Yahoo: TamiLynn618

We are getting ready to go on a long-distance trip in a few short weeks and I'd like to know what I should do (if anything) about these new symptoms.

She would probably be upset if she even knew I said anything about this too anyone (she's the typical modest teen).

Thanks guys!
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-Tami

"The only thing worse than being diagnosed with Crohn's disease 25 years ago, was when my daughter got diagnosed with this dreaded disease 4 years ago and having to stand by and watch her suffer with the same things I've dealt with for most of my life and feeling so utterly helpless to do anything about it!"
05-08-2006, 01:18 PM   #2
Mozam
 
Hi Tami,

I can't give a diagnosis obviously but I can say that it may be a fistula. HAs she got an appointment with the doc anytime soon? She should get one, certainly before your trip. I've had one, but my experience was pretty ugly, and according to my doc at the time highly unusual. I was only about thirteen, fourteen, it started off as a lump on my test icicles (hey, gotta laugh) just before by you get the drift and I thought it may just be an allergic reaction to new washing powder etc. I don't remember it being sore at all, but it was helluva uncomfortable sitting down. My doc knew straight away what it was though, and I had a small op to open it up and lay it across my skin that day. I was VERY unlucky with mine, and if you couple that to the fact that I was really underweight, very malnourished and not able to fight or heal very quickly, it took a VERY long time for the wound to heal.

But my story about it is I would imagine, one of the bad ones - I would hope that there are a few cases where it is not so bad. And hey - chances are it's not what your girl has anyway.

All the love in the world to you both Tami,

Dez
05-08-2006, 06:55 PM   #3
Tami Lynn
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Hey Dez!

It sounds like your experience with having a fistula was pretty horrific at such a young age.

I called my daughter's doctor today, but unfortunately he won't be able to see her in the office before her next scheduled appointment, which is on the 30th of May. <sigh> Sometimes I think doctors can get TOO busy.

I am really hoping that a fistula is NOT what is going on with her... but I figured that there are enough people here who have dealt with them that somebody should be able to tell me how those nasty things start up and what to look out for.

Right now, we are just going to watch it and see what happens: hopefully nothing will come of it and these weird symptoms will go away about as fast as they first appeared.

My greatest concern has been the fact that we are about 3 1/2 weeks away from taking a long trip, and I wouldn't want her to have a medical crisis while we're out of state.

Thanks for your reply!
05-08-2006, 08:28 PM   #4
Jeff D.
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Does she have any drainage like a leak.

I have never had one thank God but I have heard that leakage is something to look for.

Call the GI right away though it might need surgery to drain it which should make it feel better.

Get back to us on her condition

Jeff
05-08-2006, 10:27 PM   #5
Tami Lynn
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Hi Jeff,

I told her the same thing...to watch for any type of drainage/leakage. She says there isn't any.

After speaking with the doctor's office, it doesn't seem very likely I will be able to get her in or seen by her doctor before her appt that's scheduled on the 30th <ugh>

I think for now, we're just gonna' keep an eye on it. If she develops any type of drainage or fever, I will probably just take her to the E.R. (unfortunately, it seems that is the only way to get seen sooner by a doctor).

Maybe (hopefully) it is nothing to worry about and there's some logical explanation for it... but I don't want to mess around with anything if it is, ya know?

I have never had a fistula myself, so this subject is unfamiliar to me.

I will definitely keep you guys posted. Thanks for your concern.
05-15-2006, 07:02 AM   #6
Tami Lynn
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Well, I finally got Alyssa in to see her doctor so he could check her over, and the good news is that she does NOT have a fistula!!! Yaaaaaay!

Apparently it's only an ingrown hair that was trying to get infected, and the good ole' doc had a simple solution to deal with it - wheeeew!

I felt kind of stupid after I took her (as I'm sure she did as well), but how was I supposed to know, right? Better safe than sorry.

He said that if it had been the beginning of a fistula, she would probably be able to feel some swelling underneath the skin where it was trying to channel through to the surface of the skin.

Anywhooo...we're all clear for our trip to N.Y. (at the moment, and hopefully it will stay that way!).

*HUGS*
05-15-2006, 08:27 AM   #7
Mozam
 
Absolutely fab news Tami - I hope my reply didn't make you fret too much. Well seeing I'm not a doc, eh??

Hope the trip goes well too, I'm sure it'll be a blast - when are you for the off??
05-15-2006, 03:04 PM   #8
Kate
 
thats awsome news and yeah your right its better to be safe then sorry i have also been to the drs for things and then found out that they wernt as bad as first thought but i have also been to the drs and had it worse then first thought and its then that your glad that you took the safest root... well best of luck for your daughter and your trip
05-19-2006, 07:57 AM   #9
Tami Lynn
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Thanks guys!

We leave for our trip on June 1st Dez (and I'm SOOO excited!). I donno... there's something about going back to your hometown. It's almost like taking a trip down memory lane or re-visiting your past. Not only that, but it's an adventure because I haven't flown in 19 years (or driven a car in that town)!

I'm certain the visit will inspire many childhood memories and stories that will be sure to bore my poor girls to tears! LOL
05-20-2006, 01:45 PM   #10
Valentina
 
hope you have a great trip, and great news its not a fistula, that is a very scary thing to have to wonder about, esp on your way off on vacation.
hope she stays well for it.
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