How did you decide about surgery?

I didn't have pain when I would pee (only when I had a UTI). Yes, coughing and sneezing was much worse. Finally at six weeks post op I can feel a sneeze coming on and not get stressed. Truly the pain you can control with medication.

you will only have the clear bag for about a week or so, your et will help you order stuff and you can use it as soon as you get it
i had mine a few days after i got home.

they use the clear ones in the hosptial partly because they are cheaper, but also becasue they need to be able to see your output and such.

Not all pouches are the same dimension. I am not sure which ones your hospital will use. Mine used Coloplast Assura clear one-pieces. I am still using these only because they are very lightweight and my nurse wanted minimal stress on my delicate incision wound. They make these pouches opaque too, but as I mentioned, I have too much trouble centering those over my stoma correctly. I have many samples of opaque two-pieces, just have to wait to try them until I fully heal. I am sure you will be able to switch to opaque two-pieces much sooner than I have.

Regardless, I find the pouch covers to be comfortable. Sometimes the bottom corner edges of the pouches scratch my leg, and this eliminates that.

The Coloplast pouch I use is about 8 inches by 5.5 inches. I basically traced the pouch and add 1/2 inch for the seam. Then on the back piece I make an opening the size of the area where the bag attaches to the flange (sorry... this is a little hard to explain). I zig-zag stitch around this opening (rather than hemming) to keep it from unraveling. I did not leave an opening at the bottom for draining. Rather, I put a seam at the bottom too, and just remove the pouch cover when I drain and then slip it back on afterwards. I can cut one out and sew it in about 15 minutes, so it is definitely an easy project.

Well, my surgery is tomorrow! I am a little nervous.... up until yesterday I was feeling so clear and good and ready to go. Now I'm a bit spacey from the clear fluids only... I started getting scared last night and wondering if I'm making a mistake not going for the J Pouch..... I have Crohn's not UC, and none of the hospitals in Boston will even do the J Pouch surgery.... but the surgeon did push me on it, as I am a possible candidate.... but my rectum is very inflamed, has been for a long time, and there seems to be a rather high risk that things won't go well, and I'll need even more surgeries. I still feel like I just want to be done, and the bags and stoma and all don't feel that scary (besides this list, I met with someone locally who showed me a lot of practicalities, and I've spoken to several other people on the phone). My gi doctor as well as a lot of others recommended proctocolectomy with a permanent ileostomy.

So, that's what I'm going with, but hoping I'm not setting myself up for lots of questioning in the future etc. I am having to trust a lot of folks in this.... but they are very trustworthy .... it's just a very big thing. I know I'm rambling a bit, sorry.

One practical question: how long until you can wear sweatpants/pajama pants after the surgery? I always wear my own clothes in the hospital, but I realized that with the catheter, my usuals won't work right away.

Thanks

Good Luck. I wish J would have had the protocolectomy. We would not be facing probably another surgery. Thoughts and prayers are with you.

LOL UC wife..... I don't have a Boston accent (grew up in Chicago, where people don't have accents

Thanks all

Best of luck to you, blueglass.  

I am seeing my surgeon in 2 weeks to hopefully schedule my total proctocolectomy with permanent ileostomy for some time in late June [going on a family vacation to Disney World & the beach in early June].   I have Crohn's Colitis, too, and I am totally done.   I want it all gone, colon, rectum, anus.  I want my life back. 

Keep us posted once you get home to let us know how things went.   { { { H U G S } } }

Thanks everyone..... I'm off to do my pre surgery enemas -- last ones ever! Keep thinking about the joys of not having to ever again have unwanted objects in there ....

i just wore pants that were way bigger than they needed to be, so they didn't rub on me, and it was about a month after surgery that i really felt comfortable wearing jeans

Good luck tomorrow!

Thanks everyone. I feel much calmer today .... didn't sleep much, but that's not news. Guess I'll have a 4-6 hour nap later in the day (my surgery is going to be laparoscopic, so it takes longer, but hopefully the recovery is quicker). You all have been amazing, I'm so grateful. I'll give a report when I'm up for it.

I talked to someone yesterday who regaled me with j pouch horror stories.... it was exactly what I needed....

The first enema last night was horrible.... I haven't done one of these at home in a long time. In the hospital, they give you about ten times as much fluid, so it's awful going in, but easy going out. This was a very crampy half hour on the toilet, and all the while I was just thinking that I'm not going to have to do this again, ever. Second enema was easy.