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When the struggle feels never ending

I visited my consultant yesterday (yes, on a Saturday because despite the reports, we DO have an NHS on the weekend!) I’ve been having stomach pains, feeling very tired and more worrying, some weird swellings in my stomach.  I knew what he was going to say, but it didn’t make it any less devastating when he told me I have two hernias. 

Fuck. Two?! 

I have a parastomal hernia, which means it sits right behind my stoma and an incisional hernia in my belly button.  I can’t actually explain just how upset I am.  I know some people may think that a hernia is a minor thing, but it affects you every day and limits what you can and can’t do.  But worse than that for me, is that they can only be fixed through surgery.  I just feel my struggle is never fucking ending. 

Just saying the word ‘surgery’ makes me anxious, I feel hot, my palms sweat and my mouth goes dry.  I feel like crying and running away.  The word takes me back to a dark place of hospital wards, pain, suffering and sadness.  I feel panicky and sick. 

Mr Brown saw my face and asked me what I’d like to do, he said surgery is the treatment for this and I just shook my head. “No. I can’t.  I’m not ready in my body or my mind to face surgery again.”  He smiled and agreed, saying he thought I was right and that we should wait as long as possible to operate. 

I asked about alternate ways to help during this time, I already wear support underwear (see Vanilla Blush for support underwear that doesn’t look like your nan bought it) and I try to not over exert my tummy muscles.  I have spoken to my stoma nurse about getting some other hernia support designed for people with an ostomy. 

The other thing is my weight. There’s too much of it. 

I asked Mr Brown if losing weight would help and he said yes.  It will help with the pressure on my stomach and when I do face surgery it will be better for me to be a bit lighter.  I’m a size 16-18, my BMI is 28, I am classed as overweight and plus size. I genuinely like how I look, I don’t diet because I don’t feel that I need to be thinner.  Now I am being told that losing weight would be really beneficial to my health and so it is time to shed a few pounds. 

I know this will be hard, I’ve been overweight since I started having babies but if this will hold off the surgery then it something I must do. 

Regarding the tummy pains and aches, I was told that I’ve had a lot of surgery, there are a lot of internal scars and unfortunately, it is just part of healing. I’ve had a lot taken away inside so I suppose things are moving around and settling which causes pain.  Regarding the tiredness I had bloods taken to test my vit b12 so Ill wait and see what they say about that. 

I’m trying to be positive and look for the ways I can help myself. But really I want to hide in a duvet and cry. I’m absolutely devastated. Have I not been through enough? Does the struggle never end? After each of the 4 surgeries I’ve had in the past 3 years, I think it will be my last, I think that this is the one that makes everything ok, but it never does. 

There’s always something else around the corner and I’m so tired of being unwell and broken.  When does it all end? When will I be ok? 

I don’t know the answer to this question but I do know that I have no other choice but to plod on and keep going.  I’ll recite my Yorkshire mantra that “it’ll be reight” and keep smiling. 

Sam X 

Harry the hernia

My hernia is getting worse by the day, it’s hard to know what to do for the best. It will be fixed in April during my pouch surgery but till then it’s getting increasingly difficult to deal with.

It’s a large hard swelling behind my stoma about the size of half a large grapefruit. There’s quite a lot of pressure behind it and as it sticks out I’ve actually knocked it a couple of times. Ouch.

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It’s quite hard to photograph myself but I tried so you can see what I’m talking about. This photo is looking down onto it, so you can see the left side of my tummy is flat whilst the hernia is pushing out from behind my bag. It makes the bags not work perfectly too.

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This is from the right side, you can see how far it’s sticking out.

There’s some information on parastomal surgery techniques here.

I believe that they will stitch the muscles and put a mesh into place that will stay in my body and reinforce the muscles where my stoma was. As I’m having the pouch surgery I will be having my stoma removed anyway.

Still no date on surgery, I think I won’t get a date till after my tests which I’m having on the 26th March.

Thanks for reading

Sam xxx

Parastomal Hernia

Over the past couple of months I developed some swelling behind my stoma, I thought it was due to the heat, the humidity and the amount of activity I was doing whilst we were  in Australia.  But since we got back, the swelling didn’t really go down.  It is worse in the evening and goes up and down, its causing me some discomfort but not really painful.

I spoke to my stoma nurse who thought it was a hernia, but as I was due to see my surgeon she suggested that I refrained from any lifting and saw what Mr Brown said.  He confirmed that he thought it was a hernia and that he could repair it surgically but as I am probably planning the pouch surgery it would be worth just trying to deal with it and wait till the takedown surgery when my stoma will be removed anyway.

A hernia is when there is a weakness in muscle tissue that causes the intestine to bulge through.  Because a stoma goes through the abdomen it becomes a compromise in the muscles and hernias can be common in people with a stoma.  A hernia behind the stoma is called a parastomal hernia.  The term parastomal hernia is used to describe a bulge or swelling around or under the stoma that leads to problems with stoma function and appliance security. This usually occurs gradually and the hernia may increase in size over time.

Its probably a good idea for you not to google this term though… Some of the photographs are fairly graphic!

There are many factors that contribute to the development of a parastomal hernia including:

  • Coughing and sneezing.
  • Straining: this can happen when lifting heavy objects or duringstrenuous activities such as gardening.
  • Infection at the site of the stoma or abdominal wound.
  • Muscles becoming weaker with age.
  • Being overweight.
  • Poor siting of the stoma.
  • Emergency surgery.

The treatment differs depending on the extent of the hernia, mine appears to be relatively minor and so Im happy to wear a hernia support made for people with stomas.

parastomal hernia support

Exercise or Pilates, aimed at strengthening the core muscles, may help too.

For others the treatment will be surgery;

A tissue repair at the site of the hernia is a relatively simple procedure, but there is a high risk of the hernia recurring.

Repair and re-siting of the stoma to another location on the abdomen is a bigger operation involving a larger incision, but the chance of the hernia recurring is lower.

Repair and reinforcement of the hernia site with mesh carries a very small risk of infection but the chance of the hernia recurring is lower.

This information comes from the Colostomy Association.

As always with this blog, I am not a medical professional and all my thoughts here are entirely my own and in no way replace medical advice.  If you are worried you might have a parastomal hernia, then get in touch with your stoma nurse, doctor or clinic.

Love Sam xx