Little things I wish I had known earlier!

I'm six weeks past take down now and feeling sooo great! I started thinking about all the little things that I was worried about before, and how my worries ended up being unfounded. Now I wish I hadn't spent a second feeling anxious about those things. And there are also some things that I wish I hadn't done, but didn't know better. I figured the best thing I could do is try and pass on the knowledge to other people.

1.) I once read somewhere on the internet that "j-pouchers can never trust a fart again." I didn't like hearing that at all! But, in my experience anyway, this is NOT true, so don't stress about it like I did!

2.) Prior to takedown I was passing a lot of drainage rectally, which is normal, so that didn't bother me, but what bothered me was the very crampy feeling I used to get when this happened. I thought, if passing a little drainage makes me so crampy, what is passing stool going to feel like? Again, I shouldn't have worried. Even immediately after takedown, the sensation was not similar at all; much less painful.

3.) After my second surgery, for some reason I had a lot of trouble getting my appetite back. I could hardly eat for two weeks and then had to be readmitted to the hospital because of it. By that time, the "10-14 days" had passed so they said it was time to take my staples out. BAD idea! If you haven't eaten well, then your body hasn't had the energy to heal well. My incision was barely healed and so when my staples came out, it came right open. Don't do what I did! However, one thing you will want to know about if you find yourself in this situation is an appetite stimulant called Periactin. Saved my butt!

So, what little thing do YOU wish you had known earlier? Pass your wisdom along, maybe we can help someone out!

I should be having my takedown surgery in about a month (I'm a 3-stepper like you) and your post has made me feel a lot less anxious, thank you :]

Especially about the drainage, I have been having the same exact worries that you had.

Oh oh oh, and how often are you going? I always wondered, am I going to have to go as often as I am emptying my bag right now?

Because I used this forum soooooooooooo much during his UC battles and did a lot of research I already knew and related various accounts to my husband about so many people saying "they wish they had done it sooner". Well lo and behold not long after the surgery he was saying the same thing and said so to the surgeon and to his GI doctor. His GI Dr. who treated him for 3 years smiled & answered back..."but you were not ready and needed to do this when you were". It ended with a permanent ileostomy and not a hopeful j-pouch procedure but it is what it is as they say and it's ok. He accepted it immediately (took me a few days as it really bummed me out...so to speak...lol) and moved on and dealt with it.

Even though we had hoped it would be a 3-4 month process I got a lot of info beforehand that we both went over and digested so we were well informed and aware and no major surprises.

This is totally due to taking the time to read oodles of threads with information that people give so freely for which we are grateful. (You Tube also with visual demos really took the unknown out of it and helped tremendously.) That is why I am on here and another forum each day to also help and in the process I keep learning more stuff too.

We had awesome WOCNs who took a lot of time explaining things...one nurse took the Edgepark catalog I had with me and put little stickies all over the place and brought me up to speed on the color coding to simplify ordering for me.

However the trial and error once you are home and on your own I found most of the answers to questions on the forums and suggestions about requesting different samples and different things to try.

Knowing that each person is different, heals differently, has different issues but we all share a common bond and can freely come here to get whatever help or advice they need is priceless.

Nettiemoore, I'm so glad to hear that this post has helped! Now, I may just be unusually lucky, but I don't go to the bathroom often at all. The first few days after surgery, before they were letting me eat solid foods, I was going pretty often, but once I got onto solids I started going maybe 5-6 times a day, and once at night. I'm hoping eventually I won't have to get up at night, but it's still really great.

Another thing that I worried about, I grew to like the ileostomy so much that I started to get worried that having take down was a mistake. I figured, the j-pouch is a compromise, you give up feeling quite so good in order to be able to get rid of the "bag." But I was wrong; I actually feel a lot better post take down than I did with the loop ileostomy. I love my j-pouch. The end ileostomy, though, is also a fantastic option for anyone who wants to go that route. Both are so, so, so much better than having UC.

A few very little things:

I like the safe and simple peristoma wipes for cleaning up during pouch changes when I can't shower. Much easier than paper towels or washcloths. No one told me about these; I saw an ad.

Not really an ostomy thing, but for females on sponge baths: use baby wipes instead of tp when you pee. Makes you feel much cleaner in general -- the nurse suggested this to me for my current bed rest, and I wished I'd done it the other times I couldn't shower.

Also get a device to stand and pee for after surgery. I use a pstyle, but there are others, mostly marketed for camping.