Shortly after my surgery I started to notice a lump above my stoma. At the time I wasn’t sure whether the lump was associated with post-surgery swelling and had hoped that over time would reduce with time. The lump meant that the outline of the colostomy bag was visible, particularly when not empty. 

As time progressed the lump never did get any smaller so clearly wasn’t part of any swelling due to the surgery. 

What is a Parastomal Hernia?

When a stoma is formed, an incision needs to be made by cutting through the abdominal wall so that the intestine can pass through and allow waste to be outputted. By cutting through the abdominal wall a weakness is introduced where abdominal muscles or part of the intestines can form a bulge around the stoma. 

It’s one of the most common complications of ostomy surgery and figures for occurrence rates vary depending on sources but. Incidence rates for parastomal herniation for colostomies ranges from 24% to 48% to as high as 70% depending on which source you read. From what I’ve read and what I’ve bee told by my surgeon and stoma team it does appear that there’s a fairly good chance of getting some sort of parastomal hernia from as early as 2 weeks after surgery and the longer you have a stoma the more likely that you may get some for of herniation. And the size of herniation can vary.

The Effects of a Parastomal Hernia

For most parastomal hernias it appears that they cause very little issues in terms of how the stoma functions but in some cases can cause pain or blockages. If they don’t cause any issues it’s simply a case of living with the hernia. The hernia can grow over time and cause issues with the pouch such as keeping it attached and problems with the skin surrounding the stoma.

In addition to the pouch problems or output issues, there is the issue of how it appears, particularly beneath clothing. 

Treatment Options

It appears that the best option for dealing with a parastomal hernia is not to have a surgery unless there are complications, and if surgery is performed there’s a good chance of a hernia returning. If there are no complications then wearing a support garment can help control it. Exercises that target the abdomen may also help.

My Parastomal Hernia

As mentioned, mine started to appear early after surgery and has been present ever since. For the most part it has just been there not causing any issues and I haven’t been bothered by it but lately it has grown somewhat in size and is now around the size of a tennis ball. I have seen my specialist on two occasions since surgery and have mentioned it and have been told that it’s commonplace for ostomates to have some form of hernia. For some reason I didn’t clock that he was essentially saying that many people get hernias, including you, I just continued thinking that my abdomen was misshapen. 

Like having a scab that you can’t stop picking or a rash that you can’t stop scratching, I can’t stop touching it and trying to push my bowel back inside.

It’s only over the last couple weeks that I’ve become conscious of my bag sticking out through my clothes and much like having a scab that you can’t stop picking or a rash that you can’t stop scratching, I can’t stop touching it and trying to push my bowel back inside. I’m forever aware of its presence and whilst I was most likely made aware of the complication prior to surgery I wasn’t prepared to have to deal with something in addition to the stoma. 

What Does it Look Like?

My Parastomal Hernia

What Next?

I’ve already got support belts that I wear for exercising but could do with something a bit more comfortable and I need to make an effort to do regular abdominal exercises. I’m also going to mention it again to my surgeon the next time I see him although I’m certain the response is going to be to put up with it. 

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Diagnosed with IBD in 2002, I have experienced the usual ups and downs of having a chronic disease and tried numerous medications but the time finally came in 2018 to elect to have surgery to improve my life. I had the surgery in 2019 and this is my journey having a 'New Bum'.

This post has 2 Comments

  1. Thanks for this and helping me now I’m not alone or it isn’t just me !!
    I’m just the same had my surgery 12 September 2019 , and noticed an odd shape above my stoma like a ledge ! I was told it’s nothing to worry about . At my last stoma nurse appointment, I voiced concern about the overall size and shape of my stoma and how it seemed to be protruding outwards again I was told it’s nothing to worry about. I am now concerned again as it seems to be getting larger , and I fear it is a parastomal hernia . Yes the top area protruding but also under clothes looking like I have a melon strapped to the left side of my body !!

    1. At first I wasn’t sure what it was but then after reading about PSH it made that is what I had. Based on what you say about it feeling like a melon strapped to your body, it does sound like it could be one. Does it disappear when laying down?

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