So in the middle of the night I had a blow out....I didnt drink as much water as I should of yesterday and 4 am this mroning, this is when I believe it started....So I am getting my supplies ready and my bathroom all set up and all and then I realized i have no more wafers....guess what I was thinking to myself....that Im a damn ass. how can i forget that I dont have any left....i was looking everywhere. i have some from another company which irriatates my skin but guess what...no choice....i change and alll...this mroning i go to the pharmacy to get some...guess what they have no left in stock...there order is coming in tuesday or wednesday next week...the lady behind the counter saw how disappointed I was and she said that she will look at something...she came back 5 mins later and said that she will be able to get me some on an emergency . So in the meantime I said ok no choice....just hoping that I will not have to change again until i get the ones that i really use...I go to another pharmacy to see if thye have any and no....so im pissed at myself....i come home do some housework and alll, guess what my wafer is starting to leak and im in pain. I change and under my wafer its all red, rashy and stingy....im really mad at myself....like this is like water for me i should ALWAYS have some in the house...im soooo disappointed in myself its terrrible....thanks for listening....
Family12
Apr 05, 2014 6:56 pm
mild_mannered_super_hero
Apr 06, 2014 12:52 am
everybody has a simular horror story i`m sure. i keep an extra bag/wafer in my glove box. i also have a small zippered case "travel kit" hanging on the closet rod, this way if i want to go on an overnight trip all i have to do is grab the "kit". i have had to use these supplies in an emergency simular to yours {my supplier was out one time}. i suggest you prepare a simular "emergency kit" and put it away for future disasters.
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Posted by: ejbetty
Geekyjen,
Thanks for the reply. I will be seeing my doctor on Friday and mention Entyvio. I did not remain paralyzed for more than 2 days, but it was terrible and I was so scared. The doctors just used alot of xanax and other drugs like that to UN paralyze my joints that were being attacked by the remicade. Turns out I have been diagnosed with LUPUS. It is attacking my nervous system. I had ulcerative colitis in 1996 and they had to remove my colon. Had a J pouch for 10 years, until it started failing. I then got a permanent iliosomy, and I suffer from severe chronic diareha, and I dehydrate frequently. I recently had a proctectomy, and that is when the new autoimmune disorder, Lupus, appeared. I have had two hospital stays now because of the blisters and the paralyzing incident. I will be dealing with this forever now. I have just been working on acceptance.
I love this website because of wonderful people like you!
Betty
Primeboy
Apr 06, 2014 3:23 am
Hi Family. There's an old saying that readiness is all. Easier said than done, however. The good news is that you will not run into this problem again. Experience has taught me a few things. I keep extra supplies in my glove compartment, briefcase, golf bag, attic and refrigerator. You might want to find out where the specialty pharmacies and medical supply stores are in your area. Also, keep in mind that many hospitals have pharmacies and may provide you with emergency supplies in a pinch. Good luck and don't forget to share some good news.
PB
PB
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Anoniem18
Apr 06, 2014 6:55 pm
Well Family12 welcome to the world of ostomy. I suggest you write (snail mail or e-mail or via website) to every ostomate supply company and ask for samples. If nothing else they are there in case of emergency. You might look into Stoma Seals from Costa Medical in Princeton NJ, which might be useable with your supplies that cause skin problems. A stoma seal is like saran wrap that you place around the stoma and then place the wafer onto the stoma seal.
I read from your profile that while you may be 40 yrs you're a newbie when it comes to being an ostomate. I like a post - forget by whom -, who would throw stuff out when 4:00AM (typical time?) problem came around, and now places down a towel and goes back to sleep. You might want to consider using medical tape to tape down the edge of the flange, which might just delay the disaster (initially) or rather the incident (later on) until you are ready to step into the shower.
Hopefully you had your massage (and the wine).
And solved your problem with the pain around the stoma, it's amazing how bad one's output is on skin. Did you ensure you have the right size.
Have a great day
And remember it will get better (hopefully)
And feel fee to vent as much as you like, after all that's what this site is for.
Ed
I read from your profile that while you may be 40 yrs you're a newbie when it comes to being an ostomate. I like a post - forget by whom -, who would throw stuff out when 4:00AM (typical time?) problem came around, and now places down a towel and goes back to sleep. You might want to consider using medical tape to tape down the edge of the flange, which might just delay the disaster (initially) or rather the incident (later on) until you are ready to step into the shower.
Hopefully you had your massage (and the wine).
And solved your problem with the pain around the stoma, it's amazing how bad one's output is on skin. Did you ensure you have the right size.
Have a great day
And remember it will get better (hopefully)
And feel fee to vent as much as you like, after all that's what this site is for.
Ed
LadyHope
Apr 06, 2014 8:01 pm
Hi Family12,
I am so sorry to hear about your problem and your level of frustration. This new normal takes some getting used to...a least I know it did for me. A wound care nurse told me early on to always have a month of supplies available just in case...and she gave me several scenarios. I have supplies in my purse, in the closet, in my car. I even keep a change of clothes, mostly undergarments, just in case. I keep tape too...if the wafer starts to lift, I tape it down with hy-tape (waterproof tape) and it buys me some time until I am able to take care of everything. Good luck and keep posting. There are so many great suggestions and good tips from everyone here.
I am so sorry to hear about your problem and your level of frustration. This new normal takes some getting used to...a least I know it did for me. A wound care nurse told me early on to always have a month of supplies available just in case...and she gave me several scenarios. I have supplies in my purse, in the closet, in my car. I even keep a change of clothes, mostly undergarments, just in case. I keep tape too...if the wafer starts to lift, I tape it down with hy-tape (waterproof tape) and it buys me some time until I am able to take care of everything. Good luck and keep posting. There are so many great suggestions and good tips from everyone here.
How to Get Back to Activity after Ostomy Surgery with Kimberly | Hollister
