I’m two months post-ostomy surgery and so I thought I would share my experiences on how it’s gone so far for me adapting to ostomy life. (Happy Xmas too by the way!).
On the lead up to the surgery I was confident I would quickly adjust to ostomy life after just a couple of weeks – but things rarely turn out how I predict.
In reality, I ended up having a tough first month with leaks and the stoma generally taking time to settle down, but now I feel I’m on an upward curve and getting my way back to normal. But there is still some room for improvement, which I will explain here.
Leak and bag issues
Although I’m now feeling good, the first few weeks were tricky to contend with. For a start, my stoma was leaking a lot initially which I wasn’t quite prepared for. This is because I thought that using my trusty Coloplast Flat Sensura Mio bags with Brava Paste as I have done in the past would prevent any leaks, but this system was now failing me.
As a result, in the first few weeks I had two really bad bag blow outs and minor leaks in the middle of the night, which I never experienced at all before with my old stomas. (This is my 4th stoma, but now permanent).
I lost faith in my bag set up and so I began trying a lot of different bags and accessories out to find a secure solution. Finally, I think I’ve found one with the Coloplast soft convex one-piece with a Dansac Tre Soft barrier ring and Dansac Soft Paste to provide vital extra adhesion, which is working well for me (phew!).
I’ve had no leaks at all since I adopted this system and this has really made me feel a lot better about things. It’s worth mentioning that I did try out the Salts ‘Confidence BE’ bags too and they do have a lot of nice features, but for me what really lets it down is a messy outlet system. That’s why Coloplast is the winner and I think they are by far the best in the business when it comes to bags at least – I think Dansac do the best accessories for what it’s worth.
I will add here that I also plan to try out Coloplast’s two-piece convex bags shortly to see if I can get a longer wear out of the current three days I get with my one-piece.
My stoma behaviour – its size and noise
Due to old stoma scars on the right of my abdomen, my stoma this time is on my left side which I elected for following a meeting with my Stoma Nurse who cautioned that some people who bring up stomas through old scars suffer with leaks due to uneven skin surfaces. Therefore, I didn’t want to risk this so that’s why it’s on my left side (in a mirror position to where it has been previously on my right). This is absolutely fine with me as I think stoma height is the main issue, not if it is left or right.
In terms of the look of my stoma, for some reason my ‘spout’ although it sticks out is a little short and that’s why I’ve opted for soft convex to help push it out a bit.
One thing that did bug me during the first five weeks of recovery was the noise of my stoma which was a bit of an annoyance. In the past my stomas quietened down after around week three post-surgery but this time for whatever reason it has taken until week seven for my stoma to behave and it is now more or less silent. (With my jpouch, one thing that I didn’t like was loud tummy gurgles so the relative silence of the ostomy is a big plus point for me).
Trying to thicken things up with marshmallows
I’m currently having to take quite a lot of Imodium – up to eight melts a day whereas in the past I only needed four. Even with eight melts my output is not quite as thick as I would like and so I have just started adding marshmallows to my diet to see if that helps to thicken things up! I’ve read one interesting article online about a patient experiment that concluded that eating three marshmallows three times a day successfully lowered and thickened output, so hopefully this works for me too. I’m also trialling taking codeine and Imodium together and I have to say that I am noticing some promising results by using this tactic.
As I’ve had quite a bit of small bowel removed from previous surgeries that is what is causing my output to be not quite as thick as I would like. But despite this minor issue, I tend to need to only empty my bag about 5-6 times a day, with more activity at night time as I expected.
I’d like to big up the Comfizz waistbands which I find excellent to help keep my bag flatter and more disguised under clothing. I wear one everyday. I have also tried out the specialist men’s boxer shorts from White Rose Collection which I think are a good option, but I prefer the simplicity and comfort of a waistband.
With my stoma noise reducing, leak risk controlled and a more secure bag system in place I am feeling good about things. I have almost regained the 14lb I lost in weight due to the surgery and am back at the gym doing light exercise and riding my bike out in the cold too.
Hopefully in another two months time I will be feeling truly back to normal and I plan to return to work in the New Year.
3 thoughts on “Viewpoint: My ostomy life experience in the first two months post-surgery (Ho, Ho, Ho)”
Dear Tom- still courageous and inspirational – still with you all the way and very proud and in awe of your positive approach to your circumstances – Mum 🙋♀️🥰 x
Greetings! My history real quick; anal cancer in 2005, aggressive chemo & radiation, colostomy 11 months ago due to radiation damage, 18” of small bowel removed 4 months ago due to continuous blockages. With that said, ever since my last surgery I have never had a pancake issue (of which I’m grateful for) but output is 90% of the time all liquid & the extreme gas…oh good Lord!! Most nights I hover instead of sleep because I have to burp my pouch every 20 minutes or if I don’t, I suffer a blowout! Last night I changed bedding 3 times, literally! I must confess I did have lots of holiday sweetes & wine yesterday but still…3 Times?! FYI, I take no less than 750 mg of Simethicone a day! I also am aware of the output thickening foods & prodicol. Any advice for me?
Hi Barbara, changing the bedding 3 times in one night is no good! Sorry to hear that.
It might be a good idea to trial not eating anything after 8pm perhaps to reduce gas build up in bed? Or setting your alarm at night to get up and empty your bag before it pancakes and causes a leak perhaps.
If you need to thicken your output then try taking coedine phosphate and immodium together I’d say. That might help to reduce gas too.
All the best with things, don’t let it get you down too much and have a great Xmas. Tom