When I signed up for a new bum, I didn’t really read the terms and conditions. I just focused on the benefits of having a stoma. With every procedure there are going to be complications but you just presume that you’ll come out the other end fine and carry on without any issues. But then a hernia appears.
After surgery in January, everything appeared to be fine and I had started exercising again, first by walking and swimming and then running. I was wearing a hernia support belt but not from immediately after surgery. I was given a support belt from my stoma nurse some time after surgery and then received some more around June. But by this time my parastomal hernia had appeared.
I can’t remember exactly when I first noticed the hernia but it was certainly there and sizeable in May.
What’s It Like Having A Parastomal Hernia?
Parastomal hernias are a common complication of stoma surgery and can vary in size. Mine started life as around a tennis ball size and has grown a bit larger than that. Due to its size it protrudes out and can be noticeable beneath clothing. A colostomy bag on top of the hernia means it sticks out even more and you can see the outline of the bag. Things are less noticeable under dark clothing.
When the stoma is active and the bag decides to balloon with gas or starts to fill with poop, it becomes a lot more noticeable.
Fortunately there’s no pain associated with the hernia but I do notice that wind (I think it’s just wind) collects in the bowel so that as you push it it gurgles and makes noise. This can be annoying and I do get a bit nervous about wind escaping (which it does).
Conversations With My Specialist
As soon as I was aware of the hernia I brought it up during a meeting with my specialist and it was mentioned again when I was told that I would need another operation to reopen the Ken Butt. He mentioned that he was willing to operate but wanted the Ken Butt to fully heal.
During a follow-up meeting with him in November the subject was brought up again and I was given the pros and cons of the surgery. Pros are mainly aesthetics, cons are that it can come back and there is a chance that the artificial material that is used internally could interfere with IBD. Like previous discussions, he said he was willing to operate if I wanted.
After the conversations with my specialist, stoma team and the psychologist I’m seeing, I had made the decision to accept the appearance of it and not have surgery. I would try other options such as different support belts and bags that would help reduce the profile of the hernia and would only have surgery if there was a blockage or pain.
I left my last meeting with the specialist and stoma nurse feeling positive. I had been given a new bag with a belt and the offer was there to be able to try new bags but things haven’t moved as quickly as I’d liked and I’m now in a position where I’m thinking about the hernia more than ever.
I’ve been questioning whether the decision not to have surgery is the right option and these are my current options.
This is the straightforward option of doing nothing and living with the hernia. If I was to take this option I would have to accept the fact that I have a large lump protruding from my abdomen and as soon as the bag fills with gas or poop it becomes more noticeable. Most people probably don’t notice it when you know it’s there it doesn’t matter what other people think.
Pros with this option is that I don’t have to go through another operation and can get back to normal.
Cons with this option is that it’s not going to get smaller so I have to accept the size that it is and accept that it may (probably?) get larger. I can wear a hernia support belt to reduce the profile of the hernia but I find that when I wear a support belt it restricts the colostomy bag so can cause pancaking or leaks.
This option would involve the usual procedure of using some sort of mesh to correct the hernia and after speaking to my surgeon this is a procedure that could be performed laparoscopically which would help with recovery.
Pros with this option is that it could correct the hernia and I would no longer have the sizeable lump protruding from my abdomen. If the surgery went well I would be able to get back to normal and would not be constantly being reminded of the stoma and the hernia.
Cons with this option are that the surgery is never guaranteed so the hernia could return, the surgery would mean another round of recovery (time not doing what I enjoy), and other complications could occur such as blockages.
This is something that I’m keen to try, and the wheels are currently in motion to give it a try. A problem with having a hernia and wearing a support belt is that the colostomy bag is restricted and doesn’t work as effectively. This can cause issues such as pancakes and odour leaks. With irrigation, the bowel will be empty so wearing a support belt wouldn’t cause any issues as the bag would no longer be required in the same way as at the moment (the aim is that the bag can be replaced with a cap).
Pros of this option are that I can try to alleviate the aesthetic problems by removing the poop and using the support belt.
Cons of this option are that I would be introducing a whole new routine – irrigation can add up to an hour to your daily routine (or perhaps twice daily routine). Of course irrigation brings benefits unrelated to the hernia issues but the additional time it takes to perform an irrigation should be taken into account.
So What’s It Going To Be?
If you asked me last month I would have said that I was going to live with it – this is what I have been telling people. But now I’m not sure. Colostomy Irrigation does sound an interesting prospect and would allow me to wear a hernia support belt or support underwear with confidence although I’d rather not have. I’m not sure if the decision of whether to have surgery should be linked to Colostomy Irrigation.
I’ve got an appointment with my stoma team next week to discuss Colostomy Irrigation and to see the kit involved so this will be an opportunity to discuss my dilemma in more detail.