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Crohn's Disease Forum » Your Story » Introducing myself!


03-31-2013, 10:11 PM   #1
acc929
 
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Introducing myself!

Hi there!
So my name's Claire. I'm not entirely sure how this 'your story' thing goes. Hopefully I don't get too self-indulgent. I popped up on this forum a little while ago for Medical Marijuana and also to look into LDN. At this point I was starting to feel desperate as I was "flaring" and very ill. Turns out I had an abscess after a perforation around my TI (a couple strictured areas, 6cm and 7cm respectively if anyone is interested). No wonder I felt like crap! On the 22nd my doc called and told me to go to the ER. At our appointment that week he had told me that I was constipated (I'm one of those weird ones who doesn't have D really) and sent me home, but took blood work. When they called a few days later, my white count was obviously through the roof.

I was diagnosed at age 11 and tried Entocort, asacol, 6-mp, flagyl, cipro, the works (as of 2002) before a resection when I was 13. This resection I know very little about (there was dispute in the hospital last week as to whether I still had a cecum or not! lol) as I wasn't really driving the bus at that age. Laproscopic though. The surgery put me into remission until 2010. In 2009 I took myself off my meds like an idiot (I had started uni and was scared of drinking on 6MP - my poor liver!). I started smoking heavily in 2010 due to stress. A couple months later, bam. Relapse.

After landing in the ER with a partial obstruction a couple months later I was introduced to the wonderful (and dangerous for us Crohnies!) world of painkillers aka bandaids. Wish I'd realized that then. My Crohn's has always manifested in obstructive or partial-obstructive episodes more so than anything else, along with some minor skin complaints but nothing major. Growing up with a strong family history of crohn's, I was told that it would be nothing but a 'nuisance.' I didn't know that these episodes were scarring the crap out of my tubes. The pain though, as you guys know, is something else (especially, I think, with stenosing Crohn's). Summer 2011 before embarking on a year abroad in France I got a balloon dilatation. My main GI was pushing surgery, but I was very against it at the time, and terrified of biologics. That maybe bought me two months. Waste of time. And Fleet. Ew.

And here I am almost two years later, a few bottles of tramadol and oxycodone poorer, somehow only 7 pounds lighter. I'm at home waiting to speak to a GI in Boston (came home from school in Toronto) on Tuesday. I've got a percutaneous drain in for the abscess - hairline fistula connecting it to somewhere around the ileum. Not sure if we'll be doing a strictureplasty and a resection, a total resection (there's a dilated area between the two strictures), or what. Need to wait to speak to the surgeon. I'm on Cipro and Flagyl (and some lozenge thing for the resulting candida in my mouth ) and a "clear liquid diet" according to the GI who hasn't seen me, full liquids are ok according to the on-service doc in hospital last week (um, with a hairline fistula and bad inflammation I need those calories! I'll admit to doing some full liquids but nothing near purées or anything like that. Let's just say that olive oil in broth isn't all that bad when you're starving). The GI I'm seeing Tuesday mentioned TPN pre-surgery, but as I said he hasn't seen me yet, and my friends seem to be crapping bricks over how un-frail I look. This option freaks the hell out of me because I guess I'm more of a wimp than when I was a kid? Or just I've been told enough times by nurses how awful my veins are. I'm trying to get my weight up and inflammation down by the time I see him so he doesn't push this option. I've also quit smoking (11 days in cold turkey! woo!) It sounds like they want to leave me sit 4-6 weeks to "cool down" so the surgery will be less complicated. I am also on 15mg pred from when in hospital, hoping to taper that like...five minutes ago. Also hoping that I don't need to wait a damn month for this op! I'll be graduating on time if it kills me because my crohn's can stick it where the sun actually does shine, and I've got a music festival to attend. Let's get the ball rolling, right??

Is this too verbose? It's been eleven years of illness so hopefully I summed it up ok. After surgery I've realized I need to be on a maintenance drug from learning the hard way. I'm really hoping to find a doc who will put me on LDN - why are so many of them so reluctant? It seems like it can't hurt the way biologics can, right? Anyway, that's me and my Crohn's. Getting excited for surgery and to get this damn drain out. As a skinny lady I don't have much going on up top if you know what I mean, so not being able to wear short skirts without flashing a bag full of puss* is getting old and limiting my wardrobe choices, not to mention I miss sleeping on my side and bubble baths! Any words of wisdom? Similar experiences? xx!




*strategic bag-flashing has however been helpful when it comes to creepy old men. silver linings.

Last edited by acc929; 03-31-2013 at 11:14 PM.
04-01-2013, 12:51 PM   #2
Jim (POPS)
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I'm sorry that you have been everything you have Welcome to the forum. I sure you will find the support you are looking for here. Keep your head up, things will get better.
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04-01-2013, 01:13 PM   #3
nativesith
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You ave my support and prayers, I too miss sleeping on my side.
04-01-2013, 01:21 PM   #4
acc929
 
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Do you have a drain too, native? Or a different problem that prevents this? Hopefully soon you'll be able to turn over! The fetal position is such a must for us IBDers that it's a shame to be without I tried it last night and I think since my ab muscles are getting used to the drain it's a bit better, but I still get worried my tube will get backed up and I'll explode or something! My doctor parents think that this reasoning is fairly amusing :P Thanks for the welcomes, guys
04-01-2013, 01:27 PM   #5
nativesith
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I have na been diagnosed, been having issues my whole life. The past year everything has gotten severe. Hip pain and stomach pain are bad now. Scopes with GI on April 17th.
I know every thing will be revealed then. Until then all I have is painkillers.
04-02-2013, 08:32 AM   #6
acc929
 
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Oh man! I hope that everything gets worked out soon so you can get on the path towards recovery
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