I know that when you find out you need a stoma or when you have just had your surgery, that there are all these questions that you want to ask but are too embarrassed.
There were some questions that I was too embarrassed to ask but thought I might share these with you (based on my experience or how I learnt the answer myself).
Would people be able to tell that I have an ileostomy and would it be noticeable?
Answer: I honestly thought that it would be pretty obvious and something I was that anxious about I refused to go anywhere (unless it was to my Doctors, surgeons or stoma nurse appointments) as I was worried people would point and stare and would laugh. It isn't as noticeable as I imagines and I just had to change my clothes to be more accommodating like slightly baggier shirts or elasticised waisted jeans and pants. I have been able to wear dresses too! If it is tighter fitted clothing just make sure that you allow enough room for your bag as it will fill up and just empty it often as well.
Will people be able to smell it?
Answer: No, people won't be able to smell it and you won't be able to either. I often got paranoid that people could smell it but no one ever could. Just make sure when you empty your bag to clean the drain-able part on the bottom of your bag (if using drain-able bags).
How do I empty it?
Answer: When I first got out of surgery and for the first day I had nurses coming along to empty my bag for me (only because I wasn't very mobile and being on pain medications was a bit 'out of it') but I think a couple of days after my surgery I was able to empty into the toilet. For some people they sit right back as far back on the toilet as they can go and empty into the toilet in front of them but I'm not comfortable emptying it this way. Instead I lean over the toilet and empty the output into the toilet. For the first few weeks I was too sore to bend or lean when emptying so my nurses advised it was best to empty into a vomit bag then dispose of.
When I change my bag, my stoma is pretty active, how do I avoid this?
Answer: I found if I changed my bag right after I ate or up to a few hours after I last ate my stoma would be quite active and it does become overwhelming when you have your stoma all cleaned and prepped for a new bag, then it decides to work again. Then you need to clean and do the process all over again. Trust me there is ways to avoid this. I find changing my bag for me personally works best either before I eat in the morning or late at night/early morning. I know not everyone is awake at those hours but I just find for me that is when my stoma is less active and is less overwhelming to change.
My stoma is pretty gassy and most of the time it is just air. Is this normal?
Answer: Completely normal! As embarrassing as farting or passing gas is even without a colon you will still pass gas. Depending on foods you ate or what you drink will affect what gas you produced. But the reassuring thing to know is that it is silent and no one will know. Just think you can no longer be blamed for the farts of your brothers or dad! There are products like charcoal tablets that you can add to your bag to help control the gas, just ask your stoma nurse.
I get the feeling like I need to poo, should I be worried?
Answer: I remember a couple of weeks after my surgery I had this urgent sense that I needed to poo and I panicked worried had something gone wrong, or had I done something wrong. In a panic I pushed my nurses call button and she kindly reassured me that it was normal. I learnt that as I still had a little bit of rectum left that it will create a mucus plug which is normal bodily excretions, but we don't notice when we have a fully working large bowel and rectum. I find that if it is close to being 'that time of the month' that I will have this feeling. You just need to sit on the toilet and hope it passes or there are suppositories that you can also use. But it is completely normal and don't panic. Always ask your stoma nurse if you are worried.
I just emptied my bag and noticed my output was green, should I be worried?
Answer: If you have had something blue to drink, it most likely could be that drink. I was advised to drink at least 1 Gatorade or poweraide drink a day just to keep my electrolytes, magnesium, potassium and other important levels at bay. And also having an ileostomy I more susceptible to being dehydrated. So the first time I had one of these drinks I panicked thinking something was wrong, but it wasn't it was just the effects of the blue sports drink I had earlier that day.
I can feel a hard substance moving around in my bag, what is it?
Answer: There are quite a few types of foods that don't fully breakdown when they reach your stoma and will come out in whole. I find nuts, corn, peas, celery, mushrooms, lettuce, pineapple and foods with skins (chicken, apples etc) no matter how much I chew these just don't get broken down enough when it comes to excreting these at your stoma. It wont hurt coming out but be careful as because of their size they can cause blockages.
Will it hurt to touch my stoma?
Answer: No, your stoma doesn't have any nerve endings and there should be no feeling or pain when you are cleaning your stoma. If it does hurt please see your stoma nurse.
I think that covers the more embarrassing questions for now, or that I can think of. But if you have a stoma and have an embarrassing question you would like answered, please comment below and I will answer it for you (based on my own findings/experience).