parastomal hernia

Health update

I thought I would give a bit of a health update as I feel like I am just constantly complaining on social media about how grim I feel.

I have two large hernias (I know, I know, I’m as sick of hearing that word as you are!), one is a parastomal hernia, this means it is sat right behind my stoma and one is an incisional hernia in one of my many surgery sites.  The parastomal one is the most painful, it is quite large and gets bigger throughout the day.  It is a constant feeling of pressure behind it and it feels like all my insides are going to burst out at any minute! The second hernia is not painful all the time, but a few times a day it is an awful stabbing pain, it takes my breath away and so between the two I am really struggling with pain.  I’m on codeine and nefapam for the pain which help but also make me super groggy.

The other issue is I have a large ovarian cyst, at the last CT it had grown and was around 7cm big, I am having weird periods (long gaps and random bleeds) and a feeling like constant bad period pain.  I also apparently have a large, fluid filled fallopian tube (because why not throw another thing at me!!) and so I am waiting for further scans and tests for this.  I think it is due to the huge amount of adhesions in my body, basically everything is stuck together and altogether unhappy in there.

So the plan is for the gynae surgeon to take out the cyst at the same time as they fix my hernias if possible. Mr Brown wants to get another surgeon involved, he specialises in complex abdominal cases and I have an appointment to see him at the beginning of February.

And so I am just still in limbo waiting for a surgery plan and date. On one hand, it just cant come soon enough, I am getting to the point where the pain is getting too much, my nerves are shred and every ounce of patience has been used up.  I am short tempered, pissed off and struggling to not lose my shit.

Talking of losing my shit, the parastomal hernia is making my stomach a very weird shape and so bags are not wanting to stay put, so I am leaking really often which is just making life all the crappier.  This is my parastomal hernia, the pic was taken after a day of rest and so is actually not as big as it usually is.

parastomal hernia

Most days I look about 6 months pregnant and so that’s not much fun at all…

I dropped my work days down to three days a week a couple of months ago as I was finding it so hard to keep up with everything whilst feeling so ill, exhausted and in pain every day.  This has helped a lot, but to be honest, even part time work is a real struggle right now.

Also because I had two surgeries last year and subsequent time off to recover, I am out of paid sick days so I am panicking about how much time I will need off after this next op. If it goes to plan and they do the two surgeries in one go, it will be a big old op and I will need a lot of time off afterwards to allow myself to heal. But I also won’t be paid for this time.  Of course, my health has to come first and I will take as much time as I need and the doctors recommend but adding the financial worry to the mix isn’t helping.

And so I think that is everything up to date health wise. Basically my body is broken and I’m waiting to see if docs can make life a bit less shit!

I know I have been a right whinging bag on facebook and twitter, but honestly I don’t even apologise for it! Life with chronic illness isn’t all positive quotes over images of clouds, it’s not all high fives for celebrating our awesomeness and shiny, happy selfies with puppy noses.  Sometimes it is dark and miserable, lonely and scary and the one thing I promised myself over 5 years ago when I started this blog was that I would be honest about the highs and the lows.

Thank you so much for all the kind, lovely messages I have received over the past few weeks, I try my best to reply to everyone but don’t always have the energy, but I do read them all and each one means the world, so thank you.

Sam xx

4 replies
  1. Judith Hunt
    Judith Hunt says:

    Oh my lordy, just looking at your hernia in the side on picture above makes me cringe with pain… so please be gentle on yourself as best you can…. chronic pain is unrelenting and I can’t imagine the rollercoaster ride you are currently on, however I am crossing my fingers that only positive results are just around the corner for you Sam, keep kicking butts and being badass until then…

    Reply
  2. Jacquie
    Jacquie says:

    Oh my…you poor, poor girl!!! I am SO sad for you, all this pain & these problems are not at all fair!! Please…feel free to whinge & whine all you want! I have had many health problems & pains over the years (am now 63) but nothing at all compared to what you have been going through. You are a very strong woman (thought wouldn’t it be lovely to not HAVE to be one day?) & have a wonderful supportive family, along with all your supportive & caring followers world-wide & I just KNOW you will come through this trial all for the better again. As women, it truly is amazing what we can, do & will handle, whether wanted or not, isn’t it? I think of you often & am so wishing this new year to be much healthier for you….Hugs!

    Reply
  3. jayne parkes
    jayne parkes says:

    Hi Sam. I have a Parastomal Hernia like yours, and I also had leaks on a regular basis, that is until I started using a Convex Bag. I use the Coloplast Sensura Convex bags, and the leaking has stopped. My IBD nurse saw my Hernia one day and told me to use them. I know the pain, isolation and complete ‘end of my tether’, that you are feeling. I am waiting to go in for reconstruction on my stomach wall, more of my small intestine removed ( I have already had my colon removed, but Active Crohns is now in the small intestine, and I also have strictures, which cause the most painful blockages, and causes the Hernia to go to the size of a football)…….I sometimes feel so ill, I wonder if I will make it too surgery…….like you, I have a fabulous husband, but oh the guilt I feel, for constantly being tired, grumpy and basically bloody miserable…..hang in there Sam, cos like me, you don’t have much choice. xx

    Reply
  4. Kathleen Casey
    Kathleen Casey says:

    Hi Sam. I listened to you here in Chicago when you were a guest on The Naked Podcast, and I’ve been following since. Telling the truth about our lives is the best we have to give to the world, even when people are afraid to hear it or don’t know how to deal with it. I’ve become grateful for those voices, so I keep following your blog, and I hope you keep telling it like it is. I wish you well, and I’m so sorry for your pain and difficulties right now, and truly hope that this next surgery gets you to a better place. Hang in there.

    Reply

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