Women's stomach with illustrated Ostomy bag and blog title

Scuba Diving with an Ostomy’

By Ciára McManigan

Early Beginning and the Call to the Ocean

diver holding up okay signal

I began diving in 2015, when I was 14 years old. This created a passion for diving which led to me becoming qualified as an Open Water Diver in Kent. With this, I then spent my next four summer breaks in San Diego, California, studying Marine Biology whilst in situ. Being from the UK, visiting California offered me the opportunity to cement my love for the ocean and diving whilst meeting like minded individuals at a relatively young age; so much so, that I knew this is what I wanted to pursue at University.

Almost a decade after my first diving experience, I am now a Divemaster and I have graduated from University studying Environmental Sciences with a focus in Oceanography. Although I have achieved everything my 14 year old self dreamed of, during my time at University this was nearly all taken away from me. On Friday, June 9th 2023 I was told by surgeons that I had to have emergency surgery to remove my entire large intestine as I was at risk of my bowel perforating giving me a limited survival chance. This surgery resulted in me living with an ileostomy.

University Dreams and Unexpected Challenges

I began studying at the University of East Anglia in 2019 and not long into my second semester had to return home due to the Covid-19 outbreak. The first UK lockdown meant everything from studying to diving had to go on pause for a bit. When the lockdown was lifted, however, I was motivated to fully throw myself into everything I had been missing: I joined my university’s Sub Aqua club and became publicity secretary meaning that I was to run their social media platforms, and I began my Advanced Open Water Diving course. This was also around the time I first started experiencing symptoms of ulcerative colitis.

In the summer of 2021, doing a shore dive off of the Norfolk coast with the UEA Sub Aqua club, I was walking across the beach in my full kit, I suffered severe stomach cramp, causing me to break out into cold sweats, despite it being the middle of the summer, I almost fainted. I naively chose to ignore these often occurring episodes, knowing that if I sat down and focused on my breathing then the symptoms would subside within a minute and I could continue with my activities. These episodes (which I soon learnt were the effects of an ulcerative colitis flare up) became more regular, and my weight began rapidly dropping over the coming months as my stomach issues meant my body was no longer retaining any food or nutrients, and I soon also began regularly vomiting and experiencing blood loss.

This decline in my health coincided with the completion of my AOW certification in November 2021, the week of my 21st birthday. I blamed my symptoms on stress as it was exam season at university, and I thought maybe if I looked after my diet and general health then the symptoms would disappear. Looking back, I don’t know how I had the physical strength to complete my certification. After the completion of my Advanced Open Water certification the UK diving season was now over so I began planning a trip to Malta for January 6th, to dive with the university club and escape our cold British quarries. At the time I didn’t know that my dives in November would be the last time I would dive for a while. I was never able to make it to Malta during January 2022. 

A Diagnosis and the Battle for Health

For as long as I can remember I have suffered from mental health issues. This often goes hand in hand with irritable bowel disease in causing autoimmune diseases, with ulcerative colitis in my case. As the majority of divers will tell you, diving is therapy for us. Anyone who has experienced the silence of being underwater can compare its tranquility to meditation. On January 4th 2022, I entered the harshest period of my life so far and without having the escape of diving for the foreseeable future, I was forced to confront my struggles head on without my usual escape of being underwater.

I was admitted to hospital via A&E (Emergency Room) after experiencing chest pains which were initially thought to be a blood clot of my lung. Blood tests and scans over the next 24 hours soon showed my lungs were clear but the pain was instead caused by my heart struggling to power my body as my blood loss over the previous months had finally caught up with me. In A&E I then received multiple blood transfusions, and within a month of constant hospital visits as an outpatient I was diagnosed with ulcerative colitis. The diagnosis process was both scary and intrusive, with constant scans and flexi-sigmoidoscopies, and the overshadowing fear of bowel cancer. 

The next 18 months was spent in and out of hospital, spending two weeks at a time on average admitted, receiving blood transfusions and trialing new medications, before being discharged and continuing treatments as an outpatient for a maximum of six weeks, until we would realize the medication had not worked and I would return to the hospital to begin this cycle again. The medication and steroids I was on often had horrendous side effects, such as weight fluctuations, loss of muscle, hair loss, acne, and caused insomnia. These medications were often intravenous treatments. I was administered a mild form of chemotherapy, up to 20 tablets a day, and at one point whilst I was at home, injections which I had to give to myself. Throughout my entire diagnosis I was offered the option of planned surgery to remove my bowel, creating a stoma, but the fear of the unknown meant I constantly refused and instead came close to losing my life when I ended up instead needing emergency surgery.

The Turning Point: Emergency Surgery and New Beginnings

Before my surgery in June 2023, there was a brief glimmer of hope: my health improved over the Spring break, mere weeks before my eventual surgery. I used this opportunity to finally get to Malta in April 2023, over a year after I had first intended on visiting. I was on a medication which is used in patients who have recently had organ transplants in order to prevent their immune system from rejecting the new organ, as this is essentially what my immune system was doing to my large intestine. Despite being on this heavy medication, I received approval from my consultant to dive and I managed to complete my Rescue Diver certification. I was so proud of myself for not only finally being healthy enough to be back underwater, but to go through the intensity of the rescue course successfully. That same week I went on to do the Deep Diver and Wreck Diver specialty courses. I was on a roll.

I returned to the UK and got a start on the Divemaster certification in May, aiming to finish my certification that same summer as I was graduating and I was dreaming of moving abroad to work as a Divemaster, once I had finished my degree. Many early mornings and late nights consisting of working at the pool for my Divemaster qualification, swim tests, going to the gym, and finishing my university degree, all whilst attempting to have the social life of any normal 22 year old university student soon then began to catch up on me and my fatigue and symptoms returned. I dismissed it as pure exhaustion, refusing to accept that maybe the medication had finally stopped working once again.

On May 30th 2022 I realized I had to return to hospital. This was the weekend of my Nan’s 80th birthday, and due to celebrations and having family visit from Ireland I refused for as long as possible to make the 3 hour journey from Kent to Norwich to admit myself via A&E, but also this day I was one day short from being out of hospital for 6 months and I wanted to prove to myself that I could have 6 months of normality like everyone else without constantly living on a hospital ward.

Ulcerative colitis was controlling my entire life and I was too stubborn to allow it to win until it was almost too late. I remember the day before heading to the hospital, sitting in the summer heat in my garden, shivering with a blanket around me because of the anemia the disease had caused. I was dying. Once at the hospital I assumed it was one of my ‘normal’ admittances, where a new medication would be tried out and I would be back home within a

Ciara in hospitalcouple of weeks- but this time felt different entirely. After two weeks of being admitted there was no improvement.

My health began to decline whilst still in hospital, and I was no longer letting my friends visit me as for the first time I felt too weak to even speak with them. Both of my parent’s visited every day, staying in hotels in Norwich hours away from home as to be nearby when I needed My medication dosages were increased but instead of seeing improvement, I had an adverse reaction: my body went into ileus. This is a state where your bowel is so damaged, you can no longer process any food or liquids without vomiting as your body refuses to process it. This was the point in which I began surviving solely off of intravenous fluids and glucose. My stomach was now experiencing a new pain; starvation.

Friday, June 9th, was the day that the emergency surgeons came to my hospital bed and told me I needed to have emergency surgery that weekend as they began to introduce me to stoma nurses who would prepare me for my new life with an ostomy. My Dad asked the question, ‘What happens if she doesn’t have surgery? Can we have a week for her to process the idea first?’ to which the surgeon responded, ‘She will die within 48 hours’.

My only two questions were simple: Can I still dive, and can I still graduate?

I would be lying if I said surgery wasn’t brutal. after all, I had a 5ft major organ removed. A surgery which was only meant to be 3 hours long with one main surgeon ended up taking 10 hours, with 3 teams of surgeons, as my bowel ‘had the consistency of wet tissue paper’, and if it were to break upon removal it could have been fatal. After long hours on the operating table with no update to my family, my parents assumed the worst, until they saw my surgeon in the car park on his way home from operating and he gave them the news that I was alive and well, on my way to the recovery ward. Despite all of this, recovery was surprisingly very straightforward. I had daily physiotherapy with amazing nurses by my side to help me walk again and learn how to navigate my new life with an ostomy bag, and within a week I was back home in Kent on my sofa. Recovery was only 6 weeks long, and within 4 weeks I was back up in Norwich, attending my graduation and living with my friends again at University. This also meant I was able to return to diving.

A Triumphant Return to the Water

Ciara after having an IleostomyDue to the nature of abdominal surgery, I had to refrain from heavy lifting, varying from weights at the gym, to dive tanks, for the full 6 weeks, but I was able to get in the pool and get teaching as soon as I was comfortable. After the 6 week recovery period was up, I slowly returned to the gym to increase my strength, with the main goal of being able to lift my gear onto my back and safely do giant stride entries once again.

At first I had to take things slow by kitting up in the water rather than on land, and avoid lifting my own equipment initially, but the beauty of diving is that once my kit was on in the water it became almost entirely weightless and my surgery did not inhibit the completion of my divemaster certification from then on. The incredible thing about ostomy bags as well is that they are completely waterproof meaning they survive well inside of a wetsuit with no fears of it coming off. I also had concerns about how my bag may behave at depth, as we as divers all learn early on about the effects of pressure on air spaces and I had assumed that my bag may experience some form of squeeze with no way to relieve this, but after a quick google search to discover other divers with stomas, I learnt that this simply isn’t an issue.

Overcoming Obstacles and Embracing a New Normal

After many dives in the pool with my stoma I was officially confident that my new disability would not be an issue there, however I had never done two quite important things since surgery: 1. Dive in open water, and 2. Dive in a wetsuit. In October I made my way over to Stoney Cove to finish up my course and become officially qualified as a Divemaster, and this was my first time doing each of those things. To ease any anxieties that my ostomy bag might leak, I changed it and put on a fresh bag the night before, and the morning of diving I ensured that my many layers of clothing to wear under my drysuit also allowed for my bag to freely expand.

To any divers with ostomies I also recommend having a very big breakfast so that you have enough energy to dive, but do this as early as possible so your bag can be emptied before layering up and putting your drysuit on, as emptying your bag once in a drysuit causes no real issues but it is incredibly impractical to maneuver.

Before I knew it my weekend at Stoney Cove was over and I was officially a Divemaster, and even with quite a brutal drysuit flood which soaked me and my bag, my ostomy proved itself to be absolutely no issue.

A Bright Future Ahead

Having an ileostomy not only saved my life in the literal sense, but it has given me back a life I was unable to have. I am able to live a fit and healthy lifestyle again, in which I can dive without experiencing pain and fatigue, and I have the strength to go to the gym and exercise once again. I am able to live the way any healthy 23 year old can live, without feeling as though I am missing out on opportunities due to a disease controlling me. I have since received news that I have been accepted on a work placement in Mexico, studying as an entomologist specializing in Lepidoptera, which is my first step into my dream vocation of working in the water and with aquatic flora and fauna. I wish I had known my quality of life would have been greatly improved if I had surgery long before it was an emergency as I could have never missed out on so many great experiences and could have even completed my Divemaster earlier. Thanks to my ostomy I am now living a happy and healthy life as a Divemaster, hoping to move abroad soon to work as I have always dreamed.

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