some general questions

Just from my experience.

 

>so I change my bag about 2 times a week?<

 

Thats about right. Some last longer than others. It'll all depend on how your skin handles it.

>And do you change your wafers every time you change your bag also?<

Yes. Pretty much have to. Most likely you won't need to change the actual bag ( depends on what type you are using) before the wafer.  I've put the old bag back on after changing the wafer, but only because the wafer didn't last more than a day or so. Again, it depends on your skin.  I usually toss the bag with the wafer though.

>However, my surgeon did say the only restriction is the volume of food, per se- since the stoma opening is fixed, <

I've eaten anything. Pizza, steak, doesn't matter. I've never been told about the opening of the stoma. Heck, i had to swallow this HUGE pill looking thing that was actually a camera. If that thing made it through my stoma anything would. I was always told....CHEW. Maybe thats what your surgeon was saying. The food needs to be broken down pretty well, so large CHUNKS might be tough.

>Did anyone have serious complications from surgery? Or after surgery?

My only problems came from stopping all my meds so quick. Stopped everything except the Pred, but slowly came off that. I had so many side effects from the meds that it seemed to be even worse after the surgery. How long have you been on 60 Pred?  I was on 60 for about 2 years. Coming off it was just as tough as being on.

 I recently had a skin reaction to the tape on the wafers i was using.  Just changed wafers and it's getting better.

 I never wanted surgery. Never wanted a bag. But just like you said, it's MUCH better than the way i was living. It'll take time but you WILL notice that down the line.

Good luck.

 

ya know, I get so happy when I read these replies I truly can't wait to just go under the knife & get on the healing side! I know I will be much happier, despite the "body image" issue... It's not like I'm some swimsuit model anyway, I'm a 37 year-old married mom of one! gimme a break.... I'm frightening enough as is in a bikini! Slice- I've been on 60mgs of pred now for a few months, which is too long for me. Every time I've started pred in the past (this is my 3rd? 4th? course) I start at 60, then have been able to taper, with mixed results. This time however, I go below 60mgs & BAM! Bloody mess. I would like to get down to about 30mgs just prior to surgery- I have one last Remicade infusion this coming Monday, which I don't really want to do but I need to try to stabilize myself- like I said, I've been SICK. Even the high pred dose is doing next to nothing, I'm still bleeding & going 15+ times a day. I'm going to try to taper after the remicade infusion. My surgeon said I could stop the Asacol & Imuran the day of the surgery, & they will start a pred taper right off the bat. I know it sukcs, pred tapers- it does feel worse than actually being on the drug. Stoma Girl- kudos to you for undergoing this at your age! I don't know if I'd be able to do it when I was 18. It sounds as if you're doing great with everything- it's so uplifting to read the positive replies! Thank you both!!!    PS- I can't wait to eat... the Ensure liquids are NOT cutting it!

yes it was me with the pizza, lol. And the problem was i ate it about 9 days after surgery. And it was really bad gas. I think if i had some sense and thought that out i would have waited a few weeks, lol.
I haven't eaten any pizza though, (mainly because before i had the sugery one of the only things i could eat was pizza, and i am tired of it!) but i have eaten garlic bread and other stuff with red sauce and no problem now. For the first six weeks you will be on a low residue diet, that just means don't eat things like broccoli, or cabbage or corn things like that. After that its whatever, just be careful with nuts and popcorn. I would suggest that if you are gonna eat something that causes a lot of gas, like pizza or fish, that you do it at home and try just a little. But i eat fish all the time, and everything else.
i change my bag and wafer on Sunday and Thursday. i could get longer wear out of them, but those are the two days that i always have a long enough block of time where my son is elsewhere to take a good shower and not have to rush changing it. THe longest i ever wore one was 8 days, and it was fine, but i just like to change them more often.

Churchlady is right about blockages, they usually arent' caused by food. but be sure you chew lots, or i just cut my food into tiny pieces and that way if i dont' get a piece chewed good, it's already small.
I lost a good bit of blood, down to 6.1 and had to have some blood the night of my surgery, and then that set me back a day, and a random fever, that later was determined to be a faulty thermometer, also set me back a little, lol. After that i was doing fine at home (until the pizza, lol) then after i recovered from that, i was ok, i got dehydrated and had to go get fluids and realized then how much water i needed to drink.
I think the thing that was the hardest for me was that i was on 6-mp (and you are actually supposed to taper off that and immuran) and on pred, and i just quit them both.
Stomagirl-i sleep on my stomach, after abotu two months it was easy. I couldnt' sleep at first either because of that. If you are worried about leaks sleep with a towel or waterproof pad under you. EvaLou, try to get the pad from your room at the hospital.
Now that i have just talked forever, lol. I think you will feell TONS better when you have your surgery, just think of all the great things you will be able to do! I got to go an a field trip today, i never could have done that before, if you ever get depressed, just think of soemthing you CAN do, you will be suprised what small things will make you so happy, and that will help alot.
Good luck! and dont' worry you are NOT pesty!

Eva Lou,

This wasn't addressed in your question but I want to make sure your surgeon has provided for an ET nurse to see you before the surgery and help you mark a stoma site. I think the stoma site, and of course the quality of the stoma itself, are so important for being able to deal with your ostomy afterwards. You really want to make sure it isn't too high or too close to your navel, it can really interfere with wearing clothes and the navel makes it harder to pouch.

I'm sure your surgeon addressed this, but just wanted to remind you to ask if he hasn't.

Eva,
Please don't worry about the pain. Trust me, they keep you very comfortable in the hospital with an I.V. morphine drip for a couple of days after the surgery, and then they'll give you pain pills to take when you go home, so you will not have to deal with much pain.

I'm glad that you have an excellent surgeon! Sounds like you are in good hands.

Cecilia

I do have a pretty high tolerance for pain, & after the first couple days how bad can it be??!?! I'm not looking forward to getting up & walking the day after surgery but I know it's gotta be done. My surgeon mentioned an epidural as an option also- he must've meant after the surgery, as obviously I'll be out cold during it! There is more chance of swelling with an epidural though.. I guess these are things I'll talk about with the anesthesiologist at my pre-ops. I'm not planning on an epidural- I didn't even have one for childbirth, for gosh sake!

They gave me an epidural, morphine pump and paracetamol-type drugs for the first few days, then took the epidural out followed by taking me off the morphine. I took paracetaml and tramadol for a few days but didn't really need them, I was absolutely fine pain-wise. Did help that I had a very cute male nurse around and wanted to seem like I was coping well and not in a pit of pain and despair :P

Eva Lou, I got an ileostomy on July 23. It is supposed to be temporary while my rectal surgery heals. My ileostomy starting working the very same day. I've had no real problems except for the allergic reaction to the Hollister brand wafers and paste. I eat pretty much anything I want. Today I chowed on leftover Chinese food from last night - cashew chicken and shrimp pad thai (spicey). I've noticed tomato sauce from spaghetti and pizza can be kind of smelly when I drain my pouch. Some people use hydrogen peroxide in their pouch for odor control. (I've never done this.) I use Hollister deodorizer and lubricant occasionally. Works pretty well. I do try to avoid skins from grapes, apples, potatoes, etc.. These I've read can cause a blockage as well as popcorn. I feel it's better safe than sorry.

I use a two piece. Maybe because I was told to use this by my HomeReach nurses. I've never tried the one piece. Convatec makes a nice product - especially the Moldable Wafer - no measuring of the stoma. Did anyone tell you your stoma will shrink within the first 6 weeks? Also, many of the products have alcohol in them, so be careful if you have sensitive skin.