SO sorry to hear about
all you are going through. What a scary situation!! It sounds like you have a good GI who is being really proactive in your care though and that is so important.
I'll try to answer all your questions...
I am so scared and do not know what to expect... would it be a colostomy or ileostomy?
- Depends on what your GI and surgeon decide. If you have inflammation in the colon it will most likely be an ileostomy.
What is it like?
- Hard to describe I suppose, but rest assured that you'll be surprised how quickly you get used to and even forget it's there. A day or two after you wake up from surgery your bowels will start to wake up (typically) and you'll feel your stoma starting to push out some liquid or gas. It is a strange sensation and I can't really describe it! It is involuntary and 100% painless. The stoma can sense pressure but NOT pain. If you ever feel pain it is the skin around the stoma, not the stoma itself.
I heard its better to ask for a longer peice sticking out so you get a better seal?
- This is true, if the stoma is flush with the surrounding skin it can be very hard to pouch. I find it hard to understand in this day and age why a surgeon would ever create a stoma that DOESN'T stick out nicely but there you have it. Don't be worried that you're going to end up with a flush stoma if you don't specifically ask for it -- my understanding is that if a stoma is flush it's because of anatomical difficulties with building it, not because the surgeon thinks flush is better.
What is recovery like?
- Depends on the surgery. My first procedure was an abdominal colectomy (meaning the rectum and part of the sigmoid, which are located in the pelvis, were not removed) and an end ileostomy. It was performed laparoscopically so I spent five days in the hospital, four weeks recovering with my parents' help, and was back at work and living on my own by six weeks post-op. I believe for a lapro procedure that is very typical. If your rectum is removed and/or if you have an anal closure the recovery period might be a little longer. The most striking thing about
recovery, which I was not prepared for, is the fatigue. I have enough energy to do about
half as much in any given day as I would usually, even though I'm several weeks out from surgery. That can last for months. Your body is working very hard to heal and adapt to its new plumbing! The fatigue can be mental too. I thought I would get to catch up on lots of reading and personal projects but I feel "dumb" a lot. I watch a lot of movies :) Believe me, it goes away.
Can you pick the side they put the stoma on?
- Typically no. The surgeon will place the stoma on the side where it makes the most sense based on your anatomy. Typically that is the right side, but not always.
Does one smell more than the other (colostomy vs ileostomy)?
- I think they smell *different* but not necessarily more or less. Also keep in mind it only smells when you're in the bathroom emptying your pouch. PEOPLE WITH OSTOMIES DO NOT SMELL. God I wish everyone in the entire world would learn this... I've seen people post on Ostomy boards saying that they can't have sex or even personal relationships because they smell. YOU WILL NOT SMELL BAD. Everyone who has bowel movements, whether out of their anus into the toilet or from a stoma into a pouch, has poop that smells. It doesn't automatically get smellier just because it doesn't come out of your butt. Don't worry!
Can you sleep on bag once you've healed?
- Hard to say. I know some people DO feel comfortable lying on their stomachs -- I had my first stoma for 15 weeks and I never reached that point. I do sleep on my side (both left and right) totally comfortably. The main problem is that if your entire weight is on the bag it might not be able to expand to contain all of your output while you're sleeping, and then it might leak.
Any tips would be so so so appreciated as I am a mess and do not know what to expect.... Can you specify a certain placement?
- The stoma nurse and surgeon will help pick your placement. Quite honestly since you haven't had an ostomy yet it will be hard for you to tell what a good or bad placement is. The most important thing about
a placement is to make sure it will allow you to pouch well -- most people have natural dips/wrinkles/folds in their abdominal skin and if the stoma is in a bad place relative to those features it can make you more prone to leaks. Ideally your stoma should be sited with you trying a variety of positions (sitting, standing, slouching) to identify those features and where they'll be with regard to the stoma.
General advice... I was in a very dire health situation similar to yours when I got my ileostomy. It wasn't emergency surgery but I didn't really have a choice. Chances are overwhelmingly positive that you will be in a better state with an ileostomy than without it. I think you need to focus on that and don't worry about
the specifics of pouches and appliances and wafers until you have to. When you reach that bridge you'll cross it. For now, think positive. Visualize great results. The details will be taken care of. And we are here to help
