Ostomy surgery, planned or emergency, can be daunting and leave people with lots of questions and concerns about living life with a stoma. If you are reading this before your surgery or are a new ostomate, please remember that you are not alone, each year in the UK thousands of people go through ostomy surgery and as a result there is a network of ostomates on social media and in support groups who are more than happy to share their experiences and offer first-hand advice – you’ll find they’ll become like your second family! There is lots of information and guidance available to you online, which may feel overwhelming, but please remember to reach out to your Stoma Nurse or support service (like us) if you have any questions or concerns. At the bottom of this blog you will find some useful contacts to reach out to if you need any support.
Here is a brilliantly insightful blog from Respond user, #BeTheChange campaign advocate, wife, mother, and new ostomate, Rachel, on her stoma journey and experience so far. We hope this blog will offer you some reassurance and information on what you may experience post-surgery. As mentioned, please always refer to your Stoma Nurse if you have any concerns, and also head to our handy Lifestyle page here for some further information on topics like sex and intimacy following surgery, diet and exercise, and click here to be taken to our Pre-Op section of our website where you will find more information and and advice pre-surgery.
My ostomy story…
It had been 3 months of lockdown due to Covid-19, and accepting of the fact that non-emergency operations were cancelled, you can imagine my shock when I had the call that in 2 weeks time I would have my ileostomy surgery. As a family we had to self isolate. I am a wife, mum and step-mum with my daily life focused on being a carer for my little boy Jake with whom I share Hirschsprungs Disease with. The bowel disease presents itself during the first 6 weeks in the womb where the intestines don’t develop as they should, meaning at birth (in most cases) no meconium which is the first poo a baby does. With us both, emergency ileostomy surgery was done within the first 4 weeks of life with 3 bowel washouts a day before hand. Jake has had a difficult start in life with 9 surgeries to date, 1 failed reversal of his stoma and gastrostomy surgery leaving him with a feeding tube in the stomach. Now 4 years old we can finally say he has been the most healthiest for him since birth with a stoma and a feeding tube what makes him Jake, that being chatty, funny, caring and sociable. A true legend in our eyes, he makes us proud everyday.
As for myself, my childhood and teenage years were filled with monthly episodes of enterocolitis, with my early 20s were being more manageable allowing me to qualify as a Secondary School Teacher finishing top of my class. I was so proud and felt I had found my true calling in life. I had found a new equilibrium together with meeting my husband to be and moving in after 3 weeks (his request despite what he says!). My little boy Jake was born in 2016 and within hours mothers instinct told me he had the same condition as me. I had mentally prepared myself for this, thinking deep down this would happen, but devastated for my husband where my step-son Oliver had had relatively good health.
My teaching career had to take a step back as I became Jake’s carer and following his birth my chronic pain started. Monthly stomach problems was something but chronic pain I was not prepared for. To all of your living with it I solute you, it wares you down, changes you mentally and takes such strength to live your day to day life and carry on your responsibilities. Multiple doctors appointments, rounds of botox injections and camera investigations left the doctors not wanting to operate saying it wasn’t worth the risk due to my surgeries as a child. I wasn’t willing to accept this. I couldn’t life live the way I had envisaged and I refused to accept that chronic pain was the card I was dealt. I started my Instagram account @gutsy.mum when Jake was born to raise awareness of Hirschsprungs Disease and caring for a child with a stoma. I couldn’t find much in my research surrounding this so I wanted to create it myself and be there for others where I could help. I started following adults accounts with stomas and found many had seen doctors privately for consultations to get more options which I decided was worth a try and boy did it pay off! It’s the best thing we ever did.
My parents who have supported me through it all organised the appointment of which I am eternally grateful. I have always been very close and open with them and now having Jake I understand why, seeing your child go through such experiences creates a bond like no other. I did my research before hand and even Jake’s surgeons knew of him, he came highly recommended. My husband didn’t want me to get my hopes up but as soon as he discussed my options he gave me the hope I had lost years ago. I proceeded to see him on the NHS and after a few of the standard scans and tests it was decided a stoma was my best option to get my quality of life back. By this point I couldn’t walk without being in pain and was taking enough pain killers to knock out a small army of elephants!
When Covid-19 happened I had put stoma surgery to the back if my mind thinking I wouldn’t need to deal with it for a long time, so when I had the call my family and I were in shock. For my parents especially who had seen me and Jake through the surgeries and sickness it was a worrying time and for my husband who has always been positive and strong, he encouraged me to look forward to a possible future of no chronic pain where I could be the Mum I wanted to be and have adventures like we had planned when we first met.
I asked some of the ostomate community and the wonderful people I had met through Respond’s #BeTheChange campaign for tips of how to be prepared, but I would be lying if I said I wasn’t extremely nervous. I can change Jake’s stoma bag with my eyes closed, never been queamish and had championed stomas and the disease for years through my Instagram account, but I wasn’t prepared for how I would feel after surgery. My second stoma was formed on Tuesday 30th June 2020 larascopically (key hole). My surgeon truly cares and makes you feel hopeful and looked after. I would give him the world to say thank you if I could, and his lovely secretary Kate who I have rung more times than I had hot dinners and was so lovely and helpful over the phone.
I woke up and felt no pain but didn’t want to see the stoma. I couldn’t believe I had one, it just didn’t seem real, I didn’t want to see it or touch it or change it. The bag was clear for the nurses to see which I wasn’t prepared for so I saw it pretty quickly and I felt physically sick. Sick and ashamed like I was being disrespectful to Jake. He lived with it everyday and didn’t bat an eyelid so I should be able to do the same surely? It came to changing it and I couldn’t do it. The stoma nurse said showing me was like teacher her granny to suck eggs, but this granny didn’t want to play ball and wanted to hide away instead. I read through my pre op research that the brain can make you react this way as it acknowledges that the intestine should be inside your body not outside. This followed with a post spinal dural headache where the blood vessels fail to contract when you stand or sit up following a spinal injection for medication in surgery. After four days in hospital and a week of not being able to lift my head with wanting to vomit I got my rhythm and started getting on with my new normal. Having used Respond for Jake’s products for four years I took comfort in the products I already had and was familiar with. A had phone calls for Jake’s orders where the lovely guys Tom, Ceri and James asked me how my surgery went and how I was. The beautiful Natalie sent some flowers which was the biggest surprise from the team, it really blew me away. I know that me and Jake can always count on them being there. They have been part of our stoma journey for so long I know I can ring them about a product suggestion or brainstorm something for Jake anytime even when I have my stress head Mum face on!
As I write this blog a refashioning of my stoma is on the cards, it seems my new accessory is testing me already having receded and failing to heal appropriately, but I know if I go onto my Instagram, within a few hours someone will be going through the same thing. I take such comfort in that. I found from fellow ostomates that it can take weeks if not months to accept your new body. I underestimated the emotional reaction I would have, thinking I would do it with my eyes closed like Jake and just skip off into the sunset started our new adventures as a family. Now I realise I need to give myself time, be kind to myself and take comfort that I am extremely lucky to have been given this surgery, especially during a worldwide pandemic. My surgeon has given me my life back. Yes it wont be easy but it is an opportunity to live life to the full which for the last 4 years I couldn’t. Jake was thrilled and when I got home, it wasn’t ‘Hi Mum’ it was ‘where’s your stoma then?!’.
When Jake was born Respond were part of my emotional support adapting to life with a baby that was seriously sick. To them I am eternally grateful. This is why I jumped at the opportunity to be part of their #bethechange campaign. The campaign raises awareness of living with a stoma and the discrimination experienced as a result. I had the honour of making a speech at the Senedd in Cardiff with Jake by my side.
Between this and my Instagram page I will continue to champion stoma awareness and feel lucky to have found solace in the ostomate community. To anyone about to embark on life with a stoma I would say to do your research. Social media is full of inspirational people to follow and learn from. Responds website has a library of information from stoma nurses and blogs from ostomates sharing their own experiences, hints and tips. If there is anyone whos story you identify with, send them a message. The worse that can happen is no reply. I have met some lovely people who I message daily from reaching out and have taken such comfort in their advise and words of wisdom. Most of all give yourself time. It is a long road which I am just at the start of. I am excited to see what our future holds and cant wait to share with Jake our stoma stories and how he was part of raising awareness and breaking down the stigma of having an invisible illness.
My first order…
My first order from Respond came quickly and with the added bonus of a lovely wash bag and a new pair of scissors which I was very excited about. They are like gold dust to find! The Connect magazine was included which featured me and Jake with our friends from the #BeTheChange campaign.
When chatting with the lovely team to discuss my order before hand, they made sure I had everything I needed and asked if I had any questions or products in mind. There are no silly questions and believe me I have asked a few over the years for Jake’s orders! Through all the doubts and uncertainty of having my new stoma I know that my orders from Respond will always be safe and sound. We are so lucky to have the NHS and I am forever grateful for everything me and Jake have had over the years to live our life’s to the best of our ability.
We hope you have enjoyed our latest blog post and found it insightful, informative and reassuring if you are about to have, or recently had ostomy surgery. As mentioned, there are lots and lots of resources available to you online (and when it’s safe to do so, in support groups.) Some wonderful organisations available online and over the phone to offer some extra support are:
- Colostomy UK
- Ileostomy and Internal Pouch Association
- Urostomy Association
- Crohn’s and Colitis UK
- Mind, The Mental Health Charity
- Macmillan Cancer Support
As Rachel mentioned, she will be having another ostomy surgery, to refashion her existing one, which she has kindly agreed to blog about for us – so make sure you check our social media channels for updates! Make sure to head over to Rachel’s Instagram account, @gutsy.mum for updates on her journey, and of course Jake’s.
For our award-winning service and how we could support you with your deliveries and help from our specialist trained care teams,, click here or give us a call on 0800 220 300 / 0800 028 6848 N.Ireland!
If you would like to learn more about our #BeTheChange campaign or get involved click here.