Mentally preparing for surgery - maybe dumb questions?!

Hello All,
Have been suffering with UC for 10yrs, tried everything - pred (which led to osteopenia and eventual spinal surgery), asacol, azathioprine, balzalazide, infliximab etc. Waiting for a date for ileo within 4 weeks.
I'm very excited at the thought of finally getting my life back - but nervous I'm expecting too much!

Have some (probably!) dumb questions for any who have the time
1. When having a "movement" can I still expect cramping? Pain? Feelings of urgency?
2. What is the average hospital stay and subsequent recovery?
3. Thanks to masses of pred over the years I'm a big lass - any other "larger" people out there - does it have an impact on the stoma and bag positioning, comfort and visibility??
4. Any parents out there - how much did you tell the kids? (ages 14, 11 & 6).
5. How often can I expect to empty the bag?
6. Any regrets?

I'm sure I've got lots of other daft questions too! Any insights welcome

HI Toffee - I can talk to 1, 2, and 3. I just had surgery last week (colectomy, end ileostomy).

1. I am still having some slight cramping at times but not necessarily with a movement. Nothing compared to UC!!! I'm guessing it's my body adjusting to things as it's still only one week out. Because my diet is very liquid right now due to my diet, my output if very liquidy. Sometimes when my stoma outputs it feels like a "strawberry" - those wet sloppy kisses you give to babies. I'm guessing it's gas and liquid? Other times I've felt nothing

2. I was told that the average hospital stay is 5-7 days. I was out in 4.5 but I was eating, drinking, taking meds by mouth pretty quickly. As for recovery - I was told 6-8 weeks for "normal" desk job activities, two months for lifting over 30 pounds. However, I've been on pred for a year and they said healing may take longer.

3. I am also currently a bit larger (BMI 37.5). The nurse had no trouble fitting my stoma location. In fact, she said I had an excellent stoma belly, which amused me. I don't know if this is the one and only surgery for you, but I was told I would need to lose at least 50 pounds before the next step of the jpouch surgery. I think that's to help in general with surgery and to help not put extra tension on the internal plumbing

However, I have an END ileo right now. If you are having a loop ileo (which would be if you are getting the jpouch formed and would only need one other surgery to connect), then I think those are a bit more temperamental in general and a bit more temperamental with weight.

I've only been lounging in pajamas so I can't speak to the clothing issues too well yet.

Miscellaneous: There's one big thing I didn't think of pre-surgery that's a bit surreal right now. Obviously I knew I would not be going to the restroom with an ileo. However, every time there's a rumble in my gut, I keep preparing to have to get up and "go." It's soo nice to not be running to the a bathroom. Another thing that's weird, I'll feel gas moving through my system. With UC, there's always that decision "do I let the gas out? Is it smart? Etc." Well, you don't really pass gas out your bottom now (stoma is another story). So there's not even a decision to make. It's still weird to have the urge to pass gas and not be able to though!

My only regret right now is having to empty the bag into the stupid measuring cullender before it gets dumped into the toilet! My dr. is very conscious of dehydration, so I have to measure my output for several weeks. This of course goes away.

1. When having a "movement" can I still expect cramping? Pain? Feelings of urgency? I sometimes can feel stuff moving around in there. Especially if I have eaten something that gives me a lot of gas, or eaten too much. And those things sometimes give me a tummy ache, just like anyone.

2. What is the average hospital stay and subsequent recovery? I was in for 6 days and it takes about 6 weeks to 8 weeks to get back to doing everything, then it takes a while to get back to your old self

3. Thanks to masses of pred over the years I'm a big lass - any other "larger" people out there - does it have an impact on the stoma and bag positioning, comfort and visibility??
It is harder with placement and bags staying on because of skin folds. But they will mark you so you will get a good placement. And once you feel better and are off the pred you can lose weight easily, if you want to.

4. Any parents out there - how much did you tell the kids? (ages 14, 11 & 6). My son was 2 at the time, so there wasn't much explaining. He is 7 now and he doesnt' remember me any other way, so I don't have a lot of explaining to do. He says a few weird things about it sometimes, but I just tell him I have it so I can be a better Mom and he says ok.
5. How often can I expect to empty the bag?
Depends on what and how much you eat. At first it will be a lot. That will lessen with time.

6. Any regrets? Just that I didn't do it the day I first saw blood from UC

Toffeesmissus,

I have had my ileostomy since November 2010. Here are my experiences as they relate to your questions:

1. When having a "movement" can I still expect cramping? Pain? Feelings of urgency?
I sometimes feel slight pressure when my stoma is outputting. It is usually very minor though and usually I feel nothing at all. I got a lot of painful gas cramps the first 8 weeks after surgery. Gas-X helped a lot. Eventually this cramping went away as I healed up and now I hardly ever have gas pains. I do sometimes get "phantom rectom" where it feels like I have to take a BM but I am all sewn up back there so it is just my mind playing tricks on me. I got this a lot more right after surgery and it was a bit annoying, but now I only get it once in a while. When I am nervous about something is when I get it the most or sometimes if I have eaten a huge meal. When I had UC, I had constant left colon pain. It is so nice to not have that anymore.

2. What is the average hospital stay and subsequent recovery?
I was in the hospital for 5 days. I had healing complications with my abdominal incision (ended up being from a rare reaction to the dissolvable sutures used in my abdominal wall). Because of this, it took me 4 months to heal instead of the more average 8 weeks and I had to go back for a couple more surgeries on my incision. After that rough four months though, my body seemed to heal in double-time and I got back to doing so many of the active things I love by 5 months post-op... hiking, snowboarding, backpacking. I went back to work at 8 weeks but had lifting restrictions for the first 16 weeks.

3. Thanks to masses of pred over the years I'm a big lass - any other "larger" people out there - does it have an impact on the stoma and bag positioning, comfort and visibility??
Like Christine- I was underweight when I went into surgery because I had been so malnourished and sick from UC. I have only put a little weight back on since the operation so I am not sure. Your stoma nurse will work with you to get a good placement though so I wouldn't be too concerned. I am sure once you get back to health and off the Pred your weight will be easier to manage.

4. Any parents out there - how much did you tell the kids? (ages 14, 11 & 6).
No kids so can't help you there:)

5. How often can I expect to empty the bag?
In the first 8 weeks after surgery, I emptied a lot! It seemed like my pouch was always filling up and the output was very watery. However, as my small intestine adapted, my output slowed down ALOT! Around 6 months is when it finally fell into the predictable pattern it is now at which is emptying 5-6 times a day when my pouch is about 1/3 full. My output is now usually an applesauce consistency too instead of being so watery. In the beginning after surgery, I did have to get up a couple of times at night to empty. Once things slowed down, I stopped having to empty at night most of the time. For me, it doesn't seem to matter whether I eat dinner at 6 pm or 9 pm, my overnight pattern stays pretty much the same. However, when I wake up in the morning my pouch always looks like a blimp and is full of output and gas. So far I have always managed to wake up before it has a chance to explode:)

6. Any regrets?
Absolutely none. I chose a permanent ileostomy and could not be happier with my decision. I feel so healthy and have my life back 100%. Now that I have gotten past that initial learning curve when things are very overwhelming, and I am good at managing my ostomy in a variety of situations, life feels wonderfully normal again.

Best wishes for your surgery!

-Heidi

Thank you all so much for your experience and tips. I'm really very excited about the surgery - just to be able to take my daughter on the school run and not rely on others will be an achievement in itself!
I hope to be back on forum telling everyone how fab my new pal is(will have to think of a name - maybe a new post lol!) and giving others the positive feeling I've had from many of the posts I've read here )