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Soon it'll be 1 year since my takedown. It's been 2 years for my 1st surgery, 1year for the hardest surgery. It's amazing in October I never thought I wouldn't be up with butt burn or be going 12 times a day. Now besides my fistula I'm happy. I go probably at work maybe 3 in a 9 hour day 4-5 bad day at night I sleep thru get up once. It's amazing. I just wish this fistula would go. Funny though instill can't get rid of my ostomy supplies. I feel like it'll jinx me.
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So glad to see this post. I've seen your posts about the fistula situation, and we're similar ages, I don't know... I feel a lot of sympathy for what you're dealing with but it's a relief to see that in spite of it all your quality of life is still pretty great (not to mention your attitude! so important) Smiler

I'm the same way about my ostomy supplies... my takedown is 10 days from today and I just placed a re-order for my monthly supply... Why? Don't know, I definitely already have enough to get me through the next ten days... Just superstitious like you I guess.

In a similar vein, after my surgery I tried to donate all of my factory sealed UC meds to my GI's office to be given away for samples (loads and loads of huge bottles of 5ASAs, Rowasas, Canasas, etc). My GI told me I should hang onto them "just in case" -- not a fun thing to hear coming off the high of a successful colectomy!! So I've got all that stuff too in addition to boatloads of pouches and wafers.

As an aside though, ostomy supplies have an expiration date. If they're still good, you might want to donate them so they can be of use to someone before they expire Smiler Does altruism override superstition?
Liz,
Canasa is expensive and you might have a need for it, I hope not. Some of the others as well. I use canasa daily for cuffitis. After the expiration date they are still ok, except the potency might be decreasing the further away from the expiration date. You can't donate unopened medications officially anywhere. I think it is a stupid rule as there are people that could use them.

If you ever change your minds about donating your supplies I donated mine to a non profit program in FL that turns them around and gives them to uninsured or underinsured people in the U.S. for only the shipping cost.
My supplying company automatically sent me a month of supplies at the end.
Most doctor's offices will take factory sealed meds and give them as samples. Lucky for me I was always on the maximum dosage of everything so my pills came in the factory sealed bottles instead of pharmacy packed prescription bottles.

I ended up using Canasa and butyrate for proctitis after step 1... good thing I kept it, but hopefully all for naught from now on.
This post gives me hope! I went straight from my ileostomy to getting my j-pouch so not only am I living in the bathroom I'm trying to let the pouch heal too! I'm only 3 weeks post opp and so still in the rough stage! I'm so new to all this I don't even know what a fistula is but your story made me feel like it's all
Going to be just fine! Alot of the stories on here are pretty awful and i was starting to really worry myself! Hopefully il slowly stop goin as often in the next few weeks,
I'd be delighted to end up with the same out put as you!

Steph xoxo
Hey Danielle, sorry if I mislead no to my knowledge I don't have a fistula. It's always in the back of my mind because during my initial UC flare I had gas pass from my vagina a few times, but I never had any idea it was a symptom of anything and I never told anyone. It wasn't until after Step 1 that I found out it could indicate a fistula, and insisted on a pelvic MRI and an EUA before j-pouch surgery. Nothing was found so we proceeded as planned... So, in short, who knows.

Anyway, love the positive attitude Smiler

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