Hi I’m Kayleigh and I’m 25 from Scotland.
I have had symptoms of my chronic illnesses for all of my life but genuinely thought they were normal until I was 20 and got very unwell.
At the time I was in the final year of my nursing degree and I suddenly stopped being able to hold food down and I started losing a lot of weight. I had seven admissions in 12 weeks for dehydration and malnutrition and lost 16kg in weight which forced the doctors to insert a feeding tube.
I had a nasogastric (NG) tube for a month however this was unsuccessful due to my stomach being unable to empty properly due to a condition called gastroparesis.
I was then changed to an nasojejunal (NJ) tube which puts feed into the small bowel when the stomach isn’t working.
I had the NJ tube for 10 months and was fed 24 hours a day. This meant while I was on clinical placements I had to wear a backpack all shift so that I could be fed while I worked. It was hard and I got asked a million questions constantly.
I tried a temporary gastric pacemaker but that failed. So in November 2016 a gastrojejunostomy (GJ) tube was inserted. It was nice to no longer have a tube taped to my face but sadly the GJ tube was not successful for me, it caused constant complications like infections, flipped tubes and diaphragmatic nerve damage, so I chose to have it removed in March 2018.
Staying hydrated and nourished was a huge struggle but with anti sickness injections I managed to avoid a feeding tube again. I did lose another 10kg in weight though over the next year.
Chronic joint pain caused by hypermobility and, at times, inflammation is something else I have had to manage. For me my pain is best when I am at my strongest but my other conditions have often got in the way of me being able to stay strong which then results in the pain becoming much worse.
Another condition I have is colonic inertia. I had always had constipation from being a baby but as I grew older it gradually got worse. When I was 21 the colonic inertia was formally diagnosed as well as a congenital rectal defect. I tried and failed all medical options, including using rectal irrigation for 5 years.
Colonic inertia for me was easily the worst condition I’ve had to live with. It had me in agonising abdominal pain all the time, it put me into urinary retention, it stopped me being able to eat solid foods, it made me incontinent of urine and poo, I had to use anti sickness injections every day, it pushed my ribcage and pelvis apart from the size of my colon, it caused a miscarraige and it made me so fatigued that I slept 20 hours a day and spent three years mostly in my bed.
It was decided that to improve my quality of life and to prevent my colon from perforating that I would need an ileostomy. It was a scary thought at first as I don’t tend to react well to surgery and the complications worried me but it needed to be done.
In July 2019 I got my ileostomy. It was a hard first week as I had an ileus (this is when the digestive tract stops completely for a short period) for six days which meant I was nil by mouth and I had a Ryles tube in the whole time. My electrolytes were also needing constant replacement that first week but both of these complications are very common following bowel surgery.
It very quickly completely changed my life. The catheter that I had needed for 11 months due to my bladder being so squashed from the size of my colon (it was 4 times wider than it was supposed to be) was removed just 3 weeks after surgery because I could pee on my own again.
My abdominal pain that had left me mostly bed bound for 3 years and required daily fentanyl and morphine, was better within 10 days of surgery and kept reducing until the point that I got off all pain medications after being on them for almost a decade. It did take a full year to come off all the medications as there were some setbacks due to injuries but I managed it.
Having my ileostomy has also hugely improved a condition I have called dysautonomia. At my worst, I was fainting most days and my blood pressure sat incredibly low. Now with my ileostomy, as long as I drink 3.5 litres a day and eat 60g of salt a day, my blood pressure is much better and I never faint.
There have been some complications from the ileostomy, I get partial bowel obstructions often due to my gastroparesis and small bowel dysmotility and I can’t seem to keep my potassium levels up but for me these are small prices to pay considering life changing effect my ileostomy has had.
It’s now been 15 months since getting my ileostomy and it has allowed me to get a puppy, I feel like I can fully participate in my relationship again, I can cook most nights, I can clean my house again, I’ve started gardening, I’m working out again and I’m just about to start working again after four years off.
I want to mention two of the biggest supports in my life which were my mum and my boyfriend. It is far harder to be the people watching and caring for the chronically ill person but they took it all in their stride, supported me with every hard decision and dealt with all the times that I discharged myself from the hospital even though they wanted me to stay in. I’m beyond grateful that I am able to be a daughter and girlfriend now that they don’t need to worry about constantly and who can do more normal things with them.
I couldn’t be more grateful for the life I have now and I try to never take a second for granted because I truly feel like I have been given a second chance at life
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