Finally, an update!

Hey badasses, I am sorry for being absent for so long. It has been a bit of a rough ride and I just haven’t had the emotional energy to blog for a while. I think it is really important to put your own well being first, and often as a blogger, you feel the pressure to be constantly updating and blogging about your health. But it is vital to put yourself first and that means sometimes I won’t be about here to write.

Where to begin?

After my surgery in February 2020 where I had a full abdominal reconstruction to try and deal with the multiple hernias, I spent the last 12 months in recovery. Being very careful, following all the instructions and healing whilst going through a pandemic! I was hoping that this would be my final surgery and that all would be good from here on in.

Unfortunately, I have been in a lot of pain and after CT scans and hospital visits, I found out last month that my hernias are back. One behind my stoma that stretches up to my ribs and down to my groin and one in my right side. I am devastated.

Black and white image of woman in long skirt with large hernia

The surgeon said I am now at the limits of medical technology and further surgery right now would be far too dangerous to my life to even consider. He spoke about how now we have to focus on quality of life and how to manage the hernias. I was in absolute bits, I can’t believe my bad luck with hernias! He was very lovely but also is straight with me, he told me how complex my situation now is and that he wanted to take my scans to international symposiums and reach out around the world to other surgeons to see if they have any thoughts. I always knew I was special!!

The news hit me hard

I cried for weeks just feeling like I was being given a long, slow, painful death sentence. I know how dramatic that sounds but when your surgeon is telling you that you are at the limits of technology, it feels pretty dramatic! I feel like shit. The life I thought I would lead feels like it has gone in a puff of smoke and that I will always live in this daily, gruelling pain. My mental health has taken a nose dive and all the hope I had has been yanked away from me. I just feel completely devastated. It’s not fucking fair!

I didn’t want to blog about this at the time, I was in such a dark place that it didn’t seem fair or right to put that out into the world and I just wasn’t ready to share. Man, I wasn’t even ready to speak the words out loud.

But now here we are. And I am ready.

What happened next

So a couple of things that have happened since, I started on Amitriptyline. “Amitriptyline is a type of drug called a tricyclic antidepressant. These drugs were originally developed to treat anxiety and depression, but when taken at a low dose they can reduce or stop pain. It works by increasing the amount of serotonin your brain makes. Serotonin is a chemical, called a neurotransmitter, that the brain sends out to nerves in the body. It’s thought to improve your mood, emotional state, sleep and the way your body responds to pain. By raising your serotonin levels, amitriptyline should change your body’s reaction to pain. The low dose won’t treat depression, but it should reduce your pain, relax your muscles and improve your sleep.” This information comes from Versus Arthritis.

I have also this morning been to the Orthotics department at my hospital. “Orthotics is a medical specialty that focuses on the design and application of orthoses. An orthosis is an externally applied device used to modify the structural and functional characteristics of the neuromuscular and skeletal system” Via wikipedia They have fitted me with a specially designed hernia support for people with ostomies. I have also been referred to Physiotherapy.

Woman with pink hair with hernia and wearing a hernia support belt
Side view of woman with large hernia and wearing a hernia support belt

Positives

I think the most positive thing that has happened though has surprised me a little. After getting over the initial shock, I actually feel much better. I feel free. For 8 years now I have been through surgery after surgery, always waiting for the time when Ill be fixed and better and ok. I feel like I have put so much on hold during this time, I have put things off waiting for this hallowed day when I will be me again.

But this has made me realise that I have been me all along. It’s just a different me than I was before. And I thought I would go back to some magical day before I was ill but the reality is that I have these chronic, lifelong illnesses that are never going away and I need to accept that. And I think I am getting there. Don’t get me wrong, I am not all sunshine and rainbows quite yet, I still feel raw, hurt and angry that I have to go through these things. But I do feel like I am accepting it and moving forward as this new me rather than yearning after a life of the past.

I do feel sad about the way I look. The hernias are so swollen and make my body misshapen and painful. By the end of the evening, my tummy is huge and swollen. I look 7 months pregnant. And as shallow as it may be, I feel sad that my clothes fit weirdly and my body isn’t very attractive.

But I also feel like I can put aside these ideals of one day being perfectly well and pain free, and as shit as that is, I do feel freed by it. I feel like I can make different plans now without this constant worry that I am doing something wrong.

Visualisations and reality

I don’t know if you remember, but at a surgery a couple of years ago I used a lot of visualisation and meditation to help me get through the pain and recovery. One of my visualisations was floating on still water in a kayak with my husband, just us, the water and the skies. The only noise is the birds and water around us. This visualisation helped so much to calm me and focus on breathing during panic attacks and the worst of the pain. But it very much felt like a dream of something so far in the future, on this perfect day when I waved goodbye to the hospital and was fixed and new and all the medical shit was done and dusted.

Well the knowledge that that day is probably never going to come made me take action. We bought that kayak. We went out on the lake. I sat with my eyes closed, the sun on my face, the calm water surrounding us, holding Timm’s hand and it was bliss.

Kayak on lake

I did it!!! I did this thing I had dreamt of and put off and put off and it was amazing and wonderful and fucking perfect!!! I paddled and felt fierce and strong. I donned a wetsuit and life vest and did this thing I never really thought was possible and it was beautiful. Will I ever be the fastest, most powerful kayaker? No, of course not! Will I be totally pain free in my life? Probably no. But in that moment, I felt like I could do ANYTHING. And it felt good.

I suppose I just wanted to write and get all this out, this blog has always been so cathartic to me and it is a privilege that so many of you amazing people read it and connect with me. I know I have been very absent, both here and on social media. But now I am ready to share that there is shit news, but that also gives me perspective and a freedom to let go of so much baggage. And though I still have very bad days, the good days are here and it feels a tiny bit easier to see those silver linings, the green lights, the positives in my life.

Peace and love

Sam xx

5 replies
  1. Adele Bailey
    Adele Bailey says:

    You have been through so much Sam, it truly isnt fair. The hand you have been dealt with is a bag of shit (sorry for the pun!)

    But, you are an amazing lady with a wonderful family and network of friends. If anyone can deal with this its you!

    You’re an inspiration to so many people and a wonderful person. xxxx

    Reply
  2. Karen Llewellyn
    Karen Llewellyn says:

    Hi there.
    I was put onto your Blog a couple of year ago by a lovely lady from “Sheffield young carers”.
    I’m had my latest operation 3 months ago and now back on waiting list AGAIN. I’ve just read this blog and I can’t fully relate to your first couple/three paragraphs. I too have been in n out for 10 year now (some years 2 or 3 times for operations). And like yourself each time hope it will be the one that gives me my life back. Its hard not to think like you do, because I feel exactly the same. I can’t have the actual “stomach reconstruction” because of severity of my Crohns. I’ve had “bowel resections and I’ve had 10 hernias done (each one worse than the last), I looked 8 months pregnant in January. The last operation they thought was too much of a risk, but I did pull through. But then contracted sepsis and this latest hernia started 4 days after the operation. I suffer with mental health problems generally, but this has really had a massive impact. My storma is very retracted and part of the loop has “gone” so I’m using the toilet several times a day as well as the bag. It’s a utter nightmare. I was told my life would be better, but it couldn’t be further from that. Waiting on ct results of the damage inside as to what can be done next.
    I can totally sympathise with you 100%.
    Keep ya chin up (easier said than done) xx
    Sorry for essay

    Reply
  3. Jude H
    Jude H says:

    It was a privilege to read your wonderfully well explained shit news Sam and congrats on taking the plunge and buying the kayak. Shit news is never good to receive or read, however perhaps now your focus will linger little on what might have been your return to “normal” and become directed onto what is the best you can be…. either way you get to choose and no-one can begin to imagine what it all could have been, had it been an easy fix.
    Perhaps God only burdens those that have a calling to care and share the trials and tribulations they face each day with the many that hang on your every word and think that you are a very special person to have made it this far.
    Go forth and paddle….. every chance you get!
    😘👍👏👏👏

    Reply
  4. Laura Bell
    Laura Bell says:

    Sam, I can only echo Adele, it is incredibly unfair how life has treated you and you are a very strong ,brave, lovely, lady. You have helped me face my ulcerative colitis ,cancer and surgeries and your blogs are inspiring . Sending you lots of love and best wishes for the future ❤

    Reply
  5. Jayne
    Jayne says:

    Ditto everything Adele said . . . you have been through so much, and you are so young, but you are also an incredible inspiration.

    Thank you for having the courage to share all you do. Whenever you post you remind me of a Meme (Pinterest I think) which says “one day you will tell your story of how you overcame what you went through and it will be someone els’s survival guide”. xx

    Reply

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