My Stoma Journey: Next Steps

When I had my ileostomy formed in 2018, I was given a temporary stoma. My large intestine was removed but my rectal stump was left in place so that at a later date, I’d have the option to make my stoma permanent or to opt for a j-pouch. The time to decide is now here.

If I have a j-pouch formed, and all goes well, I could eventually be stoma-free.

Life with a stoma is a personal journey and every ostomate may experience it differently. Which is why some people opt for a permanent stoma and others choose the j-pouch. There are pros and cons for each surgery and they’ll likely vary from person to person too.

I haven’t done an extensive amount of research into j-pouch surgery and that’s because I’m actually happy with bag life.

With my first operation I knew what to expect - I understood the risks of the surgery and I also had a clear idea of what my life would be like with a stoma. I knew that removing my colon and having a stoma would mean I was medication free… not taking 30 different pills every day or dealing with the side effects sounded great. It also meant I wouldn’t need to attend hospital once a month for IV therapy anymore. Once healed I would be able to eat what I wanted with (hopefully) no repercussions - and I was promised I’d get my life back.

The first stage of my ileostomy surgery came with the guarantee that I wouldn’t look or feel unwell anymore, but the next stage is where it gets complicated.

On the one hand is a permanent stoma and sticking with the bag life, and on the other is a j-pouch which means rolling the dice. All surgeries come with potential risks or possible complications, and j-pouch surgery is no exception. I must weigh up the pros and cons and see if the risks outweigh the positives. It’s quite possible that j-pouch surgery won’t result in a better quality of life than the one I already have with my bag.

When looking into the next stages of surgery, I’ve tried to stay away from ‘Dr. Google’ or social media, as this can do more harm than good but it does leave me curious. I must admit that with my temporary ileostomy I took to social media to ask the masses what it was like to actually live with a stoma bag – after all there is only so much a doctor or surgeon can tell you and it helped me to talk to others about it. However, this can come with its drawbacks - there is always the possibility that you get only the really good stories or the really bad, and it must be stressed that every journey is different; some people have a good experience with pouch surgery and others don’t.

So, this is where my internal monologue has an argument with itself:

Surgery for a permanent ileostomy: I think of my life right now with my stoma and as I write this I’ve only been an ostomate for 10 months. I’m just getting used to the bag life. I can eat and drink anything, I’m not taking any medication and I feel like I’m actually living again, rather than just surviving. However, I still need to change my bag every day, keep an eye out for leaks and just be generally aware of the bag. Not to mention, aesthetically, I look pretty different.

J-pouch surgery: If I opted for a j-pouch and it was successful, it would give me a ‘normal’ shape even with the scar of my stoma. I wouldn’t have to deal with a stoma bag anymore and I wouldn’t have to worry about leaks. However, having a j-pouch means two more surgeries not just the one. If it’s successful I’ll need the second surgery about eight to 12 weeks later, once it’s healthy. This final surgery is where the two ends of the loop ileostomy are joined, and the j-pouch is used to pass waste ‘normally’. However, if it isn’t successful, I’ll still need a second surgery to create a permanent ileostomy and remove my rectal stump.

There is a lot more to it though.

The risks of the surgeries themselves and the potential complications I could suffer afterwards, leave a lot to consider. There is also the fact that if the j-pouch didn’t work, my quality of life could emulate my pre-stoma days.

I have a lot more research to do, and I have a lot more to think about. But right now, me and bag are singing from the same song sheet and I’m just happy to be feeling well again. 

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