Step 1 of 3 jpouch surgery time - hospital and home supply list? Also, anybody in Ohio/Indiana?

After still having an accident at work (blood/mucus only fortunately, but alot of it) at 30 mgs of Prednisone and max dose of Remicade, I've tentatively scheduled my colectomy. My surgery will either be at the end of August or early Sept, depending on patient prioritization. I will have my awful colon removed and will be the recipient of a nice shiny new end ileostomy. I will likely be having 3 step jpouch surgery because of high dose Pred, hence the end ileo. I admit that I am frightened but excited. I've only had UC for about a year and a half, but have never really been in remission. I'm running out of reserves and clearly the "rescue drugs" aren't even cutting it anymore. I don't want to get any sicker before the procedure. I want to be in control of the procedure and want my life back!

What should I consider taking with me to the hospital? What OTC supplies should I have at home? What types of foods should I be ready to have at home? Does anybody know of a list of good foods for a new ostomy patient? I'm fortunate that my mom will be staying with me during my recovery to handle day to day things for me, however I would like to have a few things on hand for the first day or two.

Also, people have mentioned carrying their ostomy supplies when they are out and about which is, of course, a great idea. Excluding a change of clothing, how much space does your supply kit take up? I'm trying to figure out if a nice sized make-up kit will hold all of the emergency ostomy supplies. I have a bit of a bag obsession so it excites me to be able to buy a new one, haha.

Also, does anybody in Western Ohio have experience with home health ostomy care? My procedure is at the Cleveland Clinic but I live in Western, Ohio. If I need follow-up help with the ostomy at home, I would like to already be in the know about who to use.

Thanks! I cross posted on jpouch.org as well :).

There is a lot of good advice here. A few more things.... Disposable mattress pads for when you first get home from the total colectomy. There is about a two week learning curve before your ostomy appliance will be second nature. The mattress pads will save you from doing a lot of extra laundry.
When you call the ostomy supply companies (Hollister, Convatec and Coloplast) for samples ask for both flat and convex wafers, one piece and two piece cut to fit wafers and bags. The hospitals usually send you home with flat barriers but most of us need the convex barrier for a secure fit. Each company will supply you with a travel bag. The Hollister travel bag was my favorite because it fit easily into my purse. Other products I used regularly included: Stomahesive powder, Stomahesive paste, an anti-fungal powder, and a barrier spray. Whenever I tried the barrier wipes, the ostomy seal came right off, but other people had better experiences.

I am chiming in about the gear I always carried with me when I had an ostomy. I used a smalllish zippered case; about ! 8 inches across, and in it were always two bags; which I deliberately cut small; manicure scissor for cutting them to fit in case I had to use them, two eaken rings; plastic bags, extra panties and pantyhose and some compresses. Maybe some neutral baby wipes. All that fit; I got it in very compactly, and for 12 months didn't go anywhere without it. I could do a bag change anytime, anywhere.

you will be taken care of in the hospital and should recieve a lot of literature regarding food and everything you will need to know when you meet with your WOCN. just continue to do research on here and other sites about everything you can find out about an ostomy. also watch youtube videos of everything you can find. you sound like your pretty much exactly in my situation. i had about three weeks to a month to research and "get ready" for the surgery. you will more than likely have enough supplies leaving the hospital that you will have enough time to order what you want to use regarding your pouching system. just relax and realize you are getting your life back very soon!!!!! i go over a lot of stuff on my blog regarding the hospital and surgery in general that may help you out! good luck and GOD BLESS!!!

My Coloplast travel kit is a larger bag than my Hollister emergency kit bag. I keep the Coloplast at work. So that every single day, no matter what I forget at home, I have it where I am 40 hours a week (give or take).  My Hollister bag, being smaller, does fit into the purse easier. So, I use that for everywhere else.

Also.. I learned the HARD WAY. After having bag stay on successfully for a solid week at home, during recovery, when I wasn't sitting up at a desk bending over paperwork,etc...  I found out that isn't necessarily the case for when returning to work. My very first day back at work, in the first dang hour I was there, I had a massive bag failure. Luckily skirt was fine but panties were ruined!!! You might want to put an extra pair of black (goes with anything) pants in your car and anything else that may get dirty during an "incident" like undies.  I have coworkers that have IBD and IBS that do the same thing... They just don't talk about with anyone else (except people like me after they find out my hospital stay was from "digestive issues")

Oh yes.. I also had a squirt bottle of water that I use to rinse out my bag... It did a lot to help me clean up after that failure and get the skin clean for the emergency bag in my kit. You may want to consider having a squirt bottle with you or in your kit just in case. (even if you aren't concerned about rinsing your bag)  I was in a public, 5 stall bathroom at work and therefore walking around half naked to the sinks to get clean wasn't an option.

Don't freak out when you pass stuff rectally. It will happen. In the hospital I passed some stool with blood and shortly after I got home I passed what had to be a third or half cup of blood. Now, I pass mucus a couple times a day. (for a while it was just once a week or so.. the more I move, the more I pass)  This is NORMAL... although.. if you pass significant amouts of blood more than once, call your doctor!!!!

I'm still waiting on 2nd surgery. Can't tell you much from my personal experience about that yet. 

Jen