It’s been over a year since I had my (hopefully) final stoma surgery where I made my stoma permanent. I’d spent three years deciding whether to keep my stoma or opt for j-pouch surgery which would have left me bagless.
Spoiler alert – I kept my bag!
When you have surgery for Crohn’s and ulcerative colitis, you often are given a temporary stoma. This means that they leave your rectum and a bit of the large bowel connected to it in. You then can make a decision afterwards about whether you want to keep your stoma (and remove the bowel, rectum and anus) OR you can have an internal bag created, the j-pouch, and have no bag.
For some people this is an easy decision (like for me) and other’s it’s a lot harder. It’s also not the same option for everyone and if the disease is too bad in the rectum, they can’t make the pouch.
Disclaimer – all of these opinions are my OWN. All the information given I’ve either been told by my surgeon, I’ve found from my own research or are my own opinions/experiences
What is a j-pouch?
Okay, so what is a j-pouch? A j pouch is an artificial pouch made out of your own small intestine which is connected to your rectum. You go to the toilet ‘normally’ but the consistency and frequency would be the same as when you have an ileostomy.
If you opt for j-pouch surgery, it’s done in two stages. The first surgery, they turn your end ileostomy into a loop ileostomy (so you still have a bag) and they create the pouch inside you.
The second stage, once your pouch has been deemed healthy, they connect it up and voila! No more bag!
Not everyone can have j-pouch surgery though. People who have Crohn’s disease are less likely to be offered
If you have very active colitis in your rectum/anus there is also a chance you won’t be able to have j-pouch surgery. This is because there’s nothing there to connect the pouch to.
Like with any surgery, there can be complications. As well as the usual surgery complications there is also;
- Bleeding
- Infection
- Anastomotic leak (an opening where the bowel is joined together)
- Bowel obstruction and/or ileus
- Sexual dysfunction or erectile dysfunction
- Inability to create a pouch
Pouchitis is another complication which can come with having a j-pouch. Pouchitis is inflammation of the pouch and it seems it has many of the same symptoms as an IBD flare.
One thing my surgeon told me was that having j-pouch surgery can affect your ability to have children (more so than making your stoma permanent). This is why a lot of people choose to have surgery after having children.
If you’re wanting to read some posts from people who have lived with j pouches, I recommend;
- The Ileostomy Association has quite a few experiences
- Sahara has a whole IBD blog with these experiences
What is Barbie butt surgery (aka total proctocolectomy)
Barbie butt surgery sounds so much cooler than total proctocolectomy but they are the same thing!
A total proctocolectomy is where they remove the remaining bowel, rectum and anus. They sew your bum up (hence the barbie butt slang name for it) and you’re left with a permanent ileostomy.
I had this surgery a year ago and bowel wise I’ve been pretty great since. I still get bad trapped wind which has nowhere to go and phantom bowel happens at times BUT overall I’m happy with the decision.
There are
- an allergic reaction to the general anastheti
c - heavy bleeding
- damage to nearby organs
- infection
- scar tissue, or adhesions, that block the intestines
- an inability to properly absorb nutrients
- itching, irritation, or infection around the stoma
Why I made my stoma permanent
When I told people that I made the choice of making my stoma permanent, quite a few are shocked at the decision.
Why, when you could live bag free would you choose not to? Surely you’d rather have no bag?
I was told by quite a few medical professionals that because I’m a young woman I should try reversing my stoma.
However, I was lucky to have a really understanding surgeon who agreed with my decision.
I knew from the day I had the first surgery that I’d keep my stoma. I’m really scared of surgery (which is a totally rational fear which most of us probably have). So I knew that I’d way rather have one planned surgery rather than 2 (and possibly more if the pouch didn’t work).
I was also scared about the concept of going to the toilet ‘normally’. Last time I did that I was in pain, losing a lot of blood, going 30+ times a day and it was scary. The thought of ever being back in that position terrified me – I like the control my bag gives me.
If there’s ever an issue with my stoma, such as sore skin or blockages – I can easily see how the stoma is doing. The thought of not being able to see that kinda weirded me out to be honest.
I was also really aware of how many of these surgeries fail and patients end up with a stoma again. I read recently that 10% fail, which to some may not sound much BUT for me, it was enough. My surgeon said that whilst I was a prime candidate for one, he knows a lot of people who have gone back to having a stoma because they preferred it.
The biggest reason I decided to make my stoma permanent is that I’ve had no major problems with my stoma! If it ain’t broke, don’t fix it right? If I’d had loads of problems then my decision may have been harder.
But for me, it just felt like the right decision to make!
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