About the Ileostomy

I haven’t said much, if anything, about my ileostomy and I thought it deserved at least a mention.  When they first told me it would be necessary I was a bit upset, I will admit, because I had no idea what it would involve.  Not crying kind of upset, more like sulky feet stamping ‘oh great something ELSE to deal with’ upset.  Straight away I googled and instagrammed and found hundreds and hundreds of stories of young people (certainly much younger than me) with an ostomy of some sort.  Usually due to Crohn’s or Ulcerative Colitis, sure, but the why isn’t that important. What is, is that they made me feel a whole lot better about the idea. Look at all these fit, beautiful, young things, out about their stoma and shouting their gratitude for what it has given them.  Life. Less, or no, pain. Relief. Freedom. Yes, freedom!  Although I had cancer my symptoms had everyone thinking it was Ulcerative Colitis and if that is really what it is like, it is HORRIBLE.  I felt so awful.  Tired, drained, weak, lethargic.  Running to the toilet constantly. And I mean sometimes maybe 20 times a day.   It was miserable. And so hard to explain. I tried to tell people I didn’t feel well ‘why?’ ‘Well, you see, I have to go to the bathroom A LOT’. (Blank stare).  It was not too hard to come around to the idea that this was going to be a byproduct of a procedure that was literally saving my life.  And like any other treatment so far I accepted it. Arms open wide, come on over, give it to me. Whatever it is, I will deal with it, Just save my life.  Please save my life. 

And it has been fine. I feel lucky. I haven’t suffered badly from damaged skin or leaks. In fact I have only had one or two. And never when it really mattered.  It can be stressful, like learning any new thing can be.  In the first few days I had a few times where I was grappling with applying powder and creams and it wouldn’t stay clean and I had to start again and again. I quickly learned that when this happens just whack the appliance on as quick as you can and go back and redo with all the trimmings when you have both calmed down.  I can imagine that if you are much older and not as flexible, or your eyesight isn’t as good, or your coordination is impaired, or even if you have a bit of a belly and they place it badly, it could be a whole different kettle of fish.  My mum’s friend has a colostomy and she has become so depressed with the issues she has had. So, again, I am lucky. I am young and flexible and (fairly) coordinated and I still have a pretty flat tum. It all helps. And it all makes it not even remotely the worst thing in the world.   It is not ideal. Sure. I HAVE had moments of stressing out about what to wear, feeling unsure and uncomfortable. But I have got through them.  I am learning to dress around it.  My husband has been amazing right from the start and made it clear it was a total non issue to him. My kids have been more… Honest … But they are also more used to it now.  

I have accepted it so much that it now surprises me when faced with other people’s natural reactions.  No one is so insensitive as to say anything overtly rude to my face. But I read stories where cancer patients hope for almost anything except an ileostomy.  Or their overwhelming relief that they don’t have to have one. And despite myself I feel mildly insulted. Thinking; there are much worse things you know. Or a conversation the other day where a friend, who is in the process of possibly being diagnosed with Crohn’s and has a current, painful, leaking fistula. She was upset and her husband, presumably unwittingly, said “come on it could be worse some people have to wear a bag”.  I know it was not aimed at me, I am fairly sure he doesn’t even know I have one, but internally I did flinch.  Arguably a bag is considerably more comfortable and infinitely less painful than an open leaking fistula.  I really felt for her and wanted to reassure her that whatever happens, treatment would be progress. Of course I didn’t. After his comment I felt a bit stumped for words. 

Another friend, a surgery nurse, who was actually present in my surgery, made a face of disgust when I showed her a page of cuddly toys with ostomies, designed to support young kids with the same. I thought it was a great idea, I can see exactly how that could help young children feel better about it. I was surprised she didn’t.  I really got the impression that she thought it was an unfortunate thing that should not be publicised.  Maybe I would have felt like that before, I don’t know. I didn’t really give ostomies any kind of thought before.  I know direct experience changes how we see things, so I try not to judge, or feel offended. But it does surprise me, now, with the experience now logged in actual (wo)man hours under my belt, that it is seen as such an awful thing.  It is not like I wander around constantly dripping poo and smelling bad. People wouldn’t even know I had it if I didn’t tell them. 

And people ask me ALL. THE. TIME. When I am getting it reversed. Answer: maybe soon but I don’t know. I try not to think about it too much. My life is here and now. And I am used to it now. It really ISN’T a big deal.  And I am not just saying that.  There is a high risk of recurrance with my cancer, if it comes back we might have to go through all this again. I don’t know. I am not expecting that to happen but it might. And so I want to be as comfortable as I can be with this situation because who knows, one day it might be permanent. If i go around counting the days until my reversal, I feel like I am joining in the sentiment that it is a bad thing, something to be got rid of. And I don’t want to see it like that. I tell people “I don’t know when, I am in no hurry” and they all say “best it is off before summer though, right?”.   What if it isn’t?  It won’t be the end of the world. 

This morning the hospital called me to give me an appointment for a pre-operative procedure. And my heart kind of jumped at the thought that it could mean my op is soon. Not in a happy way. In a dread kind of way. I feel fine now, and although I want the op I just feel disheartened at going back to hospital and having surgery again. I know it is silly.  I have also read about reversals going wrong, or it taking a while for everything to work normally again.  People might be freaked out by my bag but it is easy and familiar now. Any unpredictable change is just a bit scary. 

So that is my experience of ileostomy. Not everyone will share it. I know it can be a whole lot harder. But there is a lot of support out there, both in real life and online.  I am just glad to have mine because, without a smidge of exaggeration, without it I would be dead. 


3 thoughts on “About the Ileostomy

  1. In the beginning I thought I’d cry waking up from anesthesia and seeing a bag glued to my tummy. I had a good time to think about it before the surgery. The night before, my surgeon showed up with a sharpie to mark the ileostomy site. I was all smiles. I did quite well with the bag. I was the happiest when I finally managed to do weekly changes. I was so proud of myself when I had the bag, I’d show it off to people. I would run 5 km weekly and the only annoying thing was that I had a low autonomy: I couldn’t be without emptying the bag for as long as I wanted, and more than once I drove crazy fast back home to hurry and empty a full bag. I’ve never liked public toilets. The bag isn’t awesome enough that you can empty into a large paper cup or another bag or dispose and change like vacuum cleaner bags… But it was a minor thing, the bag was a friend and Saturday mornings I felt great with a fresh bag. Do you use marshmallows? Saturday mornings were also great because with the marshmallows and the change, I had a lot of time until I needed to empty. My surgeon made me a J-Pouch, and the bag had to go when I had a blockage. It was so bad that he had to go in and find out why. The intestine was twisted and tangled, and he had to reorganize the mess and reroute all the spaghetti, and while he was in, he reconnected me. Life isn’t as easy these days, but don’t laugh at me because I can sleep on my tummy and you can’t, or at least for as long as you want. But I don’t mean to bother you with this sleep on the tummy thing, I rather have to convince myself that I’m ok now. It’s been much harder for me now without the bag. I know this isn’t how it is for everybody. Enjoy your life with the bag. You can do just about anything. Stay away from popcorn and any food that’s not advisable or misbehaves and you will be fine. Do all the things you want to do. You are already tougher and greater than the rest. Enjoy your life, enjoy your food and enjoy your people. I cheer you and wish you well!! 😉

    Liked by 1 person

  2. Hey! I just found your page … searched ileostomy .. Of course, now that I’ve read a few of your entries, I see you’ve since had it reversed! That’s exciting news! I have a permanent ileostomy (since 2006) .. the result of Crohn’s (diagnosed in 1998) ..I love my ostomy .. lol Not sure a ton of people would say that!! 🙂 Hope you continue to be well!!

    ~ Janie

    Liked by 1 person

    1. Hi Janie! Nice to meet you. Yeah it’s been quite a trip and I am still finding my feet after it all. An Ileostomy definitely is far from the worst thing in the world and I am grateful for my experience though I guess a lot of people might not understand that either! Thanks for commenting x

      Liked by 1 person

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