I have a stoma - AMA

[GrossEncountersoftheTurdKind]

I have had an ileostomy for almost one year. If you have any questions I'm happy to answer! Even the gross ones!

Thanks for the thread, very educational!

Do you need to be careful with any pressure on the bag, I'm thinking seatbelts in cars or a harness on a rollercoaster or if someone pushes against you in a crowd?

Do you need to carry spare clothes everywhere with you just in case?

Hi. I sleep on my side so I don't have any issues. If you sleep on your stomach I can imagine that causing leaks as your bag would be under pressure. Not good.

My sleep is affected as I have to get up at least twice during the night to empty my bag. You do develop a kind of sixth sense though and tend to wake up when it needs doing. Sometimes it's just full of gas and you can burp it while still in bed, but that is fraught with danger...there may also be liquid poop in there which can shoot out!! 😑😶🙄

It's fine, you can ask me anything! The stoma itself is formed from part of your intestine. For me, they cut my colon out completely so there's no way the poo can get to my rectum and anus. They cut my small intestine where it used to meet my colon, and pulled it out through a hole in my abdomen. They then fold it back on itself and stitch it to your skin. So it's like a little stumpy thing with a hole in.

It has no nerve endings so it doesn't hurt to touch it, and it feels fleshy, like the inside of your cheek. You just put your finger in your cheek didn't you!!

Mine sticks out about an inch like this photo (this isn't me by the way)

Hi. It really depends on your stoma placement. Seat belts etc don't touch mine, but for those who need protection, you can buy stoma guards. People use them when playing sports etc. I've not been bumped into in a crowd yet, but I'm sure it will happen at some point.

I take spare supplies out in a little bag, but I don't carry spare clothes. Some do though. I have a hernia so I wear a support belt, so if I do get a eak, it's contained. You do get a warning if you are having a leak, poo really stings your skin so you can tell up front if you're going to have a problem!

I was asked, when they chose the position for mine, whether I was right or left handed and did I play the guitar 😁(I don't, though I did spend quite a while trying as a teenager).

Thanks for this, OP. Always great to raise awareness.

This is the thing I can never quite find the answer to. My Mum also had all of her colon removed (Hartmans process) - so no chance of reversal - and had a stoma created, but then some people like yourself have an ileostomy, which as you describe almost looks like a little sticky out spout. I don't know what the reason for the difference is. I don't suppose you know the reason?

This is what my Mum's looks like. Like a sligtly sticky out belly button, but largely flat to the skin (also not a picture of her, just a stock pic of a stoma)

I think how it ends up is just luck - depends how it heals. Mine sticks out more on one side than the other so the opening points somewhat sideways. Also if you put on or lose weight it will affect how much it does or doesn't stick out.

Ha ha that's ace! Unfortunately mine was an emergency so I had no say in it's position. It seems to be placed quite well though.

Thank you OP. My other half has had an irreversible colostomy for the last year which he hates talking about so this has been really interesting and helpful for me!

Yeah totally agree. Some people have a stoma that's flush with their skin, or even below the skins surface, like an 'inny'. Luck of the draw or skill of the surgeon? Not sure!

I've just properly looked it up and it appears they are two slightly different finishing procedures (likely relating to what bowel they have left to play with). One is a loop ostomy and the other an end ostomy.

I know my mums has never been referred to as an Ileostomy and I know that there are slightly different bags available for each. Her records always specify her having a Hartmanns procedure which differs slightly, but again I don't really know exactly why.

Yes you can have a loop ileostomy if you still have a colon. Figure C only let's mucous out through the anus, so the colon is still present but it's being given time to rest so it can heal. Your mum will have an end ileostomy like mine according to those diagrams. She must have some or all of her colon left too so potentially she can have a reversal? I'm no expert mind!

My FIL looks likely to need a stoma due to rectal cancer. How do you carry all the supplies you need while out and about?

He would hate anything that might look "medical" so I thought maybe I could buy him one of those a nice messenger / festival cross body bag but wondering if that will be big enough?

Thank you for this AMA op. It's so important to demystify and normalise understanding of these sorts of conditions ❤️

My husband carries a normal smallish backpack with him. The only issue he has had was when visiting a stadium which had tight rules about what he could take in and his bag was too big - so he emailed them and got an exemption certificate.

Thank you so much for the thread.

I can fit everything I need for a bag change into a small make up bag. I just take a spare bag it folds in half), adhesive remover, radar key, some dry wipes, a stoma ring, and a small bin bag. All the extras like stoma paste/powder/bag deodorant/ extras he may use etc can be left at home. I very rarely need to change my whole set up while I am out, in fact I have never had to do it in over a year!

A smallish messenger or cross body bag will be absolutely perfect, you don't need to cart loads of stuff around.

Actually I just remembered I did have to do a full bag change once, it had slipped my mind! Once in a year isn't too bad though!

@GrossEncountersoftheTurdKind @notnot4profit - thank you both for your helpful replies. Great idea re: checking for exemptions for any bags; I didn't think of that.

Once in a year is good. So you can just empty it by tipping it in the toilet and then do it back up again, so no need for a full bag change?

Yes. You can just empty it down the loo and it's all done. If you have a leak then you need to do a full bag change, but for me that's rare.

I think you have come in for very unfair criticism here. I have a stoma and if I had to check the contents I wouldn't dream of doing it at the table, I would go to the loo. I am very open-minded and have absolutely no qualms about my family seeing my bag or my stoma but I would absolutely draw the line at checking contents in front of anyone at all.

The funny thing about this is “Keir” translates to dick in Persian Farsi which is my partners first language 😂.

This was such an interesting AMA, I was watching coronation street and the storyline with Bethany needing an emergency stoma. I knew a bit about the medical side of it as my auntie had a stoma and I was aware growing up about it, I had no idea about the experience of living with one though. I asked my auntie what it was when I was very young and she got very upset about it so I shied away from asking questions after that, she was obviously struggling with coming to terms with hers.

My question is this:
I am very very squeamish, I faint at the sight of any blood and feel light headed over any bodily function or injury. I lost two fingernails once and spent so much time feeling sick and woozy or fainting if I had to see them, I had to keep my fingers covered for months and have other people clean and change the bandages. My dad promised I’d grow out of it and said he was the same when he was younger, if anything I’ve become worse.

Would you be offended if someone was squeamish around you? I struggled to read everything on this thread and look at the pictures but I read it all because I genuinely wanted to learn. I worry about how my physical reaction would seem to someone who has a stoma in case they think I’m just being ignorant. My sister has crohns and will likely need a stoma in future, I’m glad I’m a bit more informed now so that I can talk to her about it so she knows I’m not feeling any negative feelings towards her but it’s just a reaction I can’t help if I’m squeamish about it.
Thank you again for being so honest and open.

Thank you for doing this AMA. I knew nothing about it but recently discovered someone I know has a stoma. It has helped me have a small understanding of what she might be dealing with. I felt sorry for you, your description of being in the hospital, emergency surgery, etc, but I hope you feel well now and have a good quality of life.

Hi. Oh God no, I would not be offended at all! It's a strange situation basically pooing out of your abdomen from an exposed part of your intestine! It took me a while to get used to it believe me! When I woke up after being in ICU for weeks (I got sepsis during the surgery), I didn't know I was getting one and knew nothing about them, so you can imagine how I felt. I couldn't even look at it, never mind touch it and clean it - it took me weeks to be able to do that. Once I realised they wouldn't let me go home until I could look after it,something clicked in my head and I just got on with it.

I think you just have to remember - it's only poo. You do one every day - can you cope with wiping your bum? I'm sure you can lol. And dealing with the output is no worse than changing a baby's nappy. And the smell isn't as bad as that!

My partner and son both are very squeamish and neither of them have seen it or shown any interest in it apart from making sure I'm OK, so you're not alone. I'm sure your sister will understand.

I would second this @Persianpaws

Also, you can't see anything to be squeamish about when someone has a stoma. If your sister does have one, even if she were to lift her shirt right up, all you'd see is the attached. Everything is completely covered by the bag, and the bag is not see through or anything. It's really nothing to worry about at all in terms of it being scary to look at. (I've only marked it sensitive so it doesn't take you by surprise, there's nothing actually sensitive about it!)

I don't have a stoma anymore, but I do have a few bags knocking about, so I'm happy to take some photos of a bag and how it works if you're interested?