Ayesha’s IBD journey

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I had symptoms of IBD from the age of 13. My symptoms were abdominal pain, mouth ulcers, weight loss, irritated eyes, loss of appetite, fatigue, passing blood and running to the toilet around 20 times a day. I went misdiagnosed for many years before my first hospital admission in June 2019 when I was diagnosed with Crohns and had to take around 30 tablets per day.

I was admitted to hospital again in June 2022 with a flare up and then diagnosed with Ulcerative Colitis. Oral medication had stopped working for me and I started infusions which kept my disease under control until November 2022 when I was admitted with my worst flare up to date. I had been in hospital for a week and was certain I would try a new infusion or start injections. I had a colonoscopy test and my consultant informed me that surgery was my only option, and if I didn’t undergo emergency surgery the following day, I may not survive the weekend. This news was a huge shock, everything happened so quickly and before I knew it I had my ileostomy and was somewhat pain free (or at least it felt this way due to the pain relief).

I was extremely lucky to be friendly with a few people on social media who had stoma bags. The first thing I did was reach out to them and seek help and advice, and I’m so grateful that I did. 

Adapting to life with a stoma bag has been a rollercoaster of emotions but I’m slowly starting to learn to love my body again. Through sharing my story and being open about my disease I’ve met so many amazing people, and I can now say that I’m beyond excited about becoming an ambassador for Eakin. 

My stoma has given me my life back. I can socialise with friends, go to events, exercise and eat and drink without worrying about where the nearest toilet is. I appreciate my health more and more each day. 

I’m lucky that I’ve only ever had a few minor problems with leaks shortly after my ileostomy surgery. I use respond and they deliver products to my door. I found products that worked well for me straight away, such as eakin freeseals and refresh 3-in-1.

I would advise anyone undergoing a similar journey to practice gratitude and self-love, be kind to yourself and your body. I think it’s SO important to raise awareness for IBD and stoma bags, to normalise the disease and allow others to realise they’re not alone and they don’t have to face the struggles and challenges feeling isolated or overwhelmed.

We’re all in this journey together and we need to keep fighting for the better days ahead.

Ayesha

Anna’s story

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Hi, I am Anna and this is my story.

After birth I was a happy healthy baby discovering the world around me with my full set of intestines. Like most brand new parents, my mum was transferred to the postnatal ward with me whilst my dad went home to sleep after a very long labour. A little later in the day during the routine midwife checks it was noted I hadn’t fed, my colour had changed from pink to grey, my tummy was not soft and squishy, it had distended, and I was visibly irritable. I was in pain and all my symptoms were leading to one thing.  

I was moved to the Special Care Baby Unit for X-Rays, tests, antibiotics along with routine observations which continued throughout the night. I made no improvement, so the paediatric doctors advised it was in my best interest to be transferred to the local Childrens Hospital for specialist care.  

The neonatal ambulance swiftly transferred me to Alder Hey Children’s Hospital, by the time I arrived my bowel was gangrenous and had multiple perforations. I was diagnosed with Necrotising Enterocolitis (NEC), a devastating and often fatal disease that causes the gut to become inflamed and necrotic in newborn babies. I required emergency surgery to create an ileostomy which saved my life leaving me with Short Bowel Syndrome as such a significant portion of my bowel had died. A further nine surgeries followed, stoma revisions and central line sites. I also had a gastrostomy (also known as MICKEY button) placed and was fed by Total Parenteral Nutrition (TPN) for five years as my body had difficulty absorbing nutrients.  

Many milestones and celebrations took place whilst I was an inpatient for the first year of my life, including my first Christmas and the millennium. 

Fast forward several years… 

At the age of eight I had a further surgery to form a Santulli stoma. The best way to describe this is a T junction for my bowels meaning half would come out of my stoma and half would go the traditional way. By doing this my bowel had the chance to gain some control before I made to decision to get a full reversal 5 years later. Santulli stomas were first performed in 1961 for neonates who had NEC like myself but now it is quite an uncommon procedure and was experimental in my case. 

As I was coping so well, I decided to have the full reversal at the age of thirteen, in my second year of high school. Being a child and teenager with a stoma was incredibly difficult mentally and this was the main reason I had a reversal. 

I can vividly remember waking up from the general anaesthetic after my surgery and feeling down to where my stoma used to be, I was over the moon.  

The first couple of years were fantastic, I felt unstoppable, I could wear what I wanted and nighttime bag bursts where a thing of the past. As the years went by, the frequency of toilet trips really started to get me down, visiting the bathroom around 20-25 times a day left me with awful abdominal and back pain along with really sore skin. My stomach also started to make louder noises than my stoma did which was actually the worst and most embarrassing side effect, particularly in exam season and quiet school lessons, it caused me so much anxiety that I would just go home from school sick. I isolated myself and really started to lose motivation for the activities I loved.  

I followed my dream to study Midwifery (maybe all the time I spent in hospital inspired me to work for the NHS!). One of the biggest challenges for me was moving away from home to university and moving into student accommodation with shared bathrooms which wasn’t easy and there was always a worry when I needed to get there quickly.   

The Coronavirus pandemic was incredibly tough, with public toilets often being closed and shops having large queues outside I realised how much I depended on the availability of a toilet and days out became near impossible.  

Through my struggles after a reversal, I realised that having a stoma was actually my normal and I wanted nothing more than to have it back. I was fortunate to have the same consultant and team throughout my childhood, they saved my life and cared for me until I was discharged at the age of 18. Very quickly I learned how hard it is to be a rare case in the adult world, I spent three years trying to find a consultant who would take me on as a patient and create a new stoma.  

I felt like I had my life back again and I adapted really quickly. I jumped straight into the new world of stoma supplies, coloured bags, barrier spray, adhesive remover spray and of course the Eakin freeseals, so many of these items were not available when I had my last stoma. 

Being able to go on days out knowing I can empty my bag into a ‘doggie bag’ in the worst-case scenario is just amazing. I have so much more confidence when I go for a run now as I do not get the pains of urgency in my back. I still have the handy skill of being able to find a toilet in the most random location!  

My life is so much better with a stoma, it took me a long time to realise this. Some days are harder than others, I am lucky to have an amazing amount of support and have learned to just laugh during the hard times such as public bag bursts as these things happen and there is always a way to get through it. 

Anna

Kevin’s journey with Crohn’s

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It was 2008 when I suffered a perforated appendix, pain I had never experienced before, and an infection that took 16 weeks to clear up. Sometime after the operation, I continued to suffer from abdominal pain and after eating I would need to rush off to the toilet. I remember thinking could it be food poisoning but little did I know at that point the journey I would go on. After a stay in hospital and numerous tests I had the dreaded barium scan. The drink took a long time to get down, but I knew it was important.

After the scan, the consultant came to deliver the news and the start of what I did not know at the time which was my Crohn’s journey. The consultant showed me the scan and the constricted bowel where the Crohn’s was in my large bowel close to the site of the appendix that was recently removed. I remember not even knowing what Crohn’s was as he delivered the results, my wife burst into tears thinking I was going to die; we both did not know what Crohn’s was and the surgeon explained it was an urgent operation that was needed.

Fast forward 16 years and I have a stoma which I have had around 8 years and in July 2023 the completion of the proctocolectomy, or Kendoll bum or widely known as the Barbie butt. In total I have had 9 operations, from resections to full removal of large bowel and formation of my stoma. My stoma does not have a name, never really looked at it in that way although I do talk to it on a daily basis, telling it to keep its voice down. It always seems to find it funny to make itself heard at the most inappropriate and quiet times.

I have two points to make when I chose to have the stoma as a male. Not all but some of us find it difficult to talk about how we feel about how we feel or our emotions and secondly I didn’t really know what having a stoma entailed, I tried wearing a fake stoma made from foam and wearing a bag to try and mentally prepare myself, but I don’t think anything can really prepare you for something that should be on the inside of you is now sticking out on full view in front of you.

I did have a great stoma team and my surgeon has been an amazing support, but they can only advise and support so much. The first few nights of having a stoma and dealing with leaks was really eye opening and a feeling genuinely that I could not deal with this. I just could not find the right products. One saving grace has been the team at Respond who have been a support when needed from discussing products to supporting my sore skin or better fitting products, to knowledgeable individuals who care and give me that outlet when I need someone to talk to and support.

One vitally important process I took was to fully inform myself of the information to hand with such huge operations and sometimes feeling like you have no one to talk to was to reach out and that’s my gift to anyone needing that support or advice, I feel that the information has got better and we are getting better at sharing our stories or experience’s which there wasn’t as much of when I was dealing with my illness but happy to help anyone who may need that advice.

Overall, its been a tough journey but one thing it has not done is beat me, its taught me to become more resilient and it does not stop me from doing what I love; most recently in 2023 running the London Marathon.

Kevin

 

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Being a carer and remembering to care for ourselves too

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Caring for a loved one with a stoma although rewarding, will no doubt lead to some stressful times, and it is vital that you care for yourself too. If you are physically and emotionally healthy, it will help both you and the person you are caring for.

If you feel you are struggling to cope, some of these self-care tips may be useful:

  • Eat a well-balanced diet and drink plenty of fluids.
  • Exercise regularly by taking short walks.
  • Try to get a good night’s sleep – avoiding caffeine, limiting screen time, having a warm bath before bed could help.
  • Don’t try to fit too much into your day, and schedule in some relaxation such as reading, watching a favourite TV programme or listening to music.
  • It’s good to talk, so why not call a friend or family member for a chat.
  • Don’t be afraid to ask family and friends for help.

You should also remember that you are not alone if you are feeling worried or overwhelmed. Talking to your loved one’s stoma care nurse could be a useful first step to finding practical solutions. Connecting with people in a similar situation by joining a support group or seeking online advice and tips could also be helpful.

To support you as much as possible we have created a leaflet dedicated to carers, for friends and family caring for ostomates. It aims to help you to understand what happens during and after stoma surgery and give practical tips on how you can help your loved one. You can download it here.

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What to watch out for when taking care of someone with a stoma

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Caring for someone having a stoma can be challenging sometimes. There are few things you need to watch out for to ensure you have a good stoma care routine for the person you are caring for. Here is few tips that could help you manage this situation. 

The skin around the stoma is called peristomal skin and it is important to keep it dry and healthy. A leaking pouch will lead to output coming into contact with the skin, making it sore, uncomfortable and even damaged over time.

Managing the peristomal skin is probably the most important thing:

  • Make sure the skin is clean and dry around the stoma using warm water with dry wipes every time you change the pouch.
  • Always apply the pouching system to dry skin, free from oily creams.
  • Remove the baseplate gently, from top to bottom, when changing the pouch. You can use adhesive remover to help you remove the pouch gently.
  • Keep an eye on the peristomal skin – it should look the same as the rest of your loved one’s skin. If you notice anything unusual or they complain about itching or soreness, seek advice from their stoma care nurse.
  • Care for the skin from the inside out by making sure your loved one is eating a healthy, balanced, and nutritious diet incorporating vital vitamins and minerals. Staying hydrated by drinking plenty of fluids can also prevent skin from drying out.

What to do to avoid leakages:

  • Make sure your loved one’s baseplate fits snugly around the stoma – neither too loose nor too tight. Measure the stoma regularly especially over the first 3 months as the stoma will shrink slightly over this period. The stoma nurse will show you how to customise the pouch to the perfect size. A measuring guide is provided in our pouch boxes to help with measuring and adjusting the cutting of the baseplate. Pre-cut products are also available when stoma has settled in size.
  • To ensure good adhesion, gently run a finger around the baseplate edges and where it meets the stoma. It can also help to place your hands or your loved one’s hands over the baseplate for a few moments to create a good bond between skin and baseplate.
  • Empty the pouch regularly – a full pouch can pull on the baseplate and allow output to seep beneath it.

To support you as much as possible we have created a leaflet dedicated to carers, for friends and family caring for ostomates. It aims to help you to understand what happens during and after stoma surgery and give practical tips on how you can help your loved one. You can download it here.

If you have any concerns about stoma care routine always speak to your loved one’s stoma care nurse or our care team are available to help. 

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Caring for someone with cognitive impairment

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When you are caring for someone who has both a stoma and cognitive impairment, you will play a major role when it comes to maintaining their stoma routine. This can seem challenging, but with the right guidance you’ll find a way that works for you both.

Preparation is key, so before you change their pouch, wash your hands with warm soapy water and make sure all the items you need are close at hand. If your loved one can help, get them to wear gloves in case they come into contact with any output and avoid any mess.

These practical tips should also make a pouch change much easier:

  • If your loved one is able to help during pouch changes, help them by giving short and clear instructions, repeated several times.
  • Devising a step-by-step written or visual guide might help.
  • Before each step, explain what you are about to do.
  • Develop your routine together and get your loved one involved by asking them to pass or hold items.
  • Carry out your pouching routine in the same place each time where possible.
  • If your loved one is restless during pouch changes, encourage them to perform another task such as brushing their hair, to distract them.
  • If it helps, stand in front of a mirror, so your loved one can see what you’re doing.
  • To stop your loved one accidentally removing their pouch, try tucking their top into their underwear for extra security.
  • If you notice your loved one touching their pouch it might mean that it is full and needs to be drained or changed.
  • If your loved one wakes in the night, the chances are that their pouch needs to be emptied, so always check to avoid accidents.

To support you as much as possible we have created a leaflet dedicated to carers, for friends and family caring for ostomates. It aims to help you to understand what happens during and after stoma surgery and give practical tips on how you can help your loved one. You can download it here.

If you have any concerns about your stoma care routine always speak to your loved one’s stoma care nurse or our care team are available to help. 

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Tips for shoveling snow as an ostomate

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Embracing the winter often requires ostomates in colder climates to navigate unique challenges, particularly when facing the daunting task of snow shoveling. Beyond the usual precautions, those with stomas need to be especially mindful of the impact strenuous activities can have on their abdominal muscles and stoma.

Ostomates must exercise caution when engaging in snow-clearing activities like shoveling. Given the surgery incisions, ostomates face an elevated risk of strained abdominal muscle injuries and should take diligent measures to safeguard against potential harm to the stoma.

Before doing any shoveling (or any other kind of strenuous activity), please make sure that you’ve discussed it with your Stoma Care Nurse, particularly if your stoma is quite new and may not be fully healed yet. Doing any kind of heavy lifting too soon can cause a hernia to develop; it is better to prevent a hernia than to have to manage it afterwards.

If you do decide to undertake some snow shoveling, it is extremely important to use the safest method and technique. Opt for pushing a shovel full of snow over lifting and throwing it, as this places less strain on your back and abdomen (and therefore, your stoma site). Begin from one side, plowing through to the other, and discharge the snow off the side of your driveway or walkway instead of attempting to throw it aside. It is also useful to hold the shovel handle to the side of your body, opposite your stoma, as you push it along. This positioning is safer, especially in the event of encountering uneven surfaces on the driveway or sidewalk, as it prevents the handle from driving into your abdomen or, more critically, your stoma.

Ensuring proper hydration is crucial before, during, and after engaging in snow shoveling. Ostomates who go into shoveling unprepared can experience overstrain and insufficient hydration, resulting in potential muscle strains. Approach snow shoveling with mindfulness and prioritize maintaining hydration levels to mitigate the risk of physical strain.

It is also important to take your time, particularly if your stoma surgery was quite recent. Take it slow and be sure to rest between each shovel pass. If you find yourself getting tired, take some time to go inside and rest before tackling some more of the job.

As the winter season unfolds, ostomates can confidently approach snow shoveling armed with the insights shared here. Remember, taking the necessary precautions today ensures a winter season filled not only with the beauty of snow but also with the assurance of a healthy stoma.

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How the winter season affects your stoma output

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As the temperature drops, some ostomates may find themselves dealing with unexpected changes in their stoma experience. This blog post aims to shed light on these winter-specific concerns and offer practical solutions.

In the frosty embrace of winter, ostomates may notice a shift in the temperature of their stoma output. As the cold weather sets in, the output may become cooler, presenting a new sensation and potential discomfort. This is particularly true for urostomates, who might find themselves facing the unexpected chill of cold urine against their skin.

To help tackle and alleviate this concern, it may be worth exploring the option of pouch covers. These covers act as a protective barrier from the pouch to your skin, insulating against the cold and providing a layer of warmth that can be especially beneficial during colder weather.

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How winter can impact the delivery of your ostomy supplies

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While the delivery of stoma supplies is typically reliable, there’s always a possibility that adverse weather conditions, such as ice and snow, could disrupt the timely arrival of your stoma products.

While uncommon, disruptions in the delivery of stoma supplies due to adverse weather conditions can pose challenges for ostomates. In certain situations, weather-related issues may not only delay deliveries, but might also prevent you from being able to personally pick-up your stoma supplies, if this is applicable to you. As a precautionary measure, it could be beneficial to maintain a surplus of your stoma products, ensuring that you have an ample supply in case of any unforeseen circumstances.

Having a surplus means keeping an extra stock of stoma products beyond immediate needs, acting as a safety net during unexpected circumstances. Some ostomates often find it beneficial to maintain at least one unopened delivery before placing a new order. This ensures that even in the face of unforeseen events, they have a sufficient level of stoma supplies to sustain them until normal delivery services resume. This can help to provide peace of mind, especially during the winter months when adverse weather is more likely to occur.

It may also be helpful to stay informed about weather forecasts and potential delivery delays during winter season. By being proactive and planning ahead, you can mitigate the impact of unforeseen circumstances and help to reduce stress.

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Stoma care tips to manage your peristomal skin this winter

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Winter’s cold air, indoor heating, reduced humidity, and the biting wind can all contribute to stripping moisture from the skin – a familiar problem for anyone experiencing dry hands, dry faces, and chapped lips. Despite your stoma and peristomal skin being shielded from direct exposure to the harsh weather conditions, you may still notice heightened dryness or skin irritation. Dry skin around the stoma can lead to flaking and irritation, potentially posing challenges in comfort and adhesion. Here are some practical tips to consider:

Protective Wipes or Sprays

After washing and drying the peristomal skin, consider using protective wipes or sprays, like eakin protectTM  barrier film, before applying your stoma pouch, to help protect the skin and reduce any irritation. Our eakin protectTM  barrier film will provide a complete skin protection while enhancing pouch-to-skin adhesion so you feel more comfortable.

Explore pouch options

With a multitude of flange options available on varying stoma pouches, consider eakin dot® pouches – it provides you with all the benefits of Skinsmart™ technology to ensure your pouch stays on securely for longer even under challenging conditions. Plus it’s a skin friendly adhesive that keeps peristomal skin healthy. Be sure to always consult your Stoma Care Nurse beforehand.

Moisturisers

When dealing with drier skin, the instinct is often to apply more moisturiser all over. However, it’s crucial to bear in mind that regular moisturisers can compromise the adhesive quality of a stoma bag, since the adhesive may break down upon contact with the moisturiser, impacting its ability to adhere to the skin. To prevent this issue, refrain from applying moisturizer in the stoma bag area and stick to specialised stoma products, unless otherwise advised by medical professionals.

As winter draws in, it brings with it some potential challenges for ostomates, with the dry and harsh conditions. By adapting these suggestions to your stoma care needs, you can navigate the winter challenges and ensure optimal care for your stoma and peristomal skin during the colder months.

 

1. eakin dot® user evaluations, Data on File, 2019 ; 2.T.G. Eakin Laboratory Testing Summary report, skinsmart hydrocolloid 2020 (Data on file)

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