Hi my name is Jessica Logan and I am the founder of http://www.makingtheinvisiblevisible.org.uk which aims to provide education and raise awareness of ALL invisible illnesses and disabilities through its projects. I want those living with one to feel empowered, know they are not alone and they are just as worthy as someone without one / with a visible one.
In July 2017 I was diagnosed with acute severe ulcerative colitis and needed emergency stoma surgery in the same week. I was in shock and suicidal for the first 6 months wondering how I could continue living that way. I was still in and out of hospital with complications so I couldn’t see any positives ahead of me.
Something just clicked one day. I couldn’t change the past but I could set the path for my future. I was drowning myself in my own negativity and it had to stop. Although I nearly lost my life at 25, I hadn’t! I had overcome the biggest challenge of my life and I was alive to tell my story, which I will be forever grateful for. My path in life has since changed and that’s ok. We don’t have to follow a set plan and we have to accept that we may not achieve some goals.
As long as you do your best, that’s what matters.
For ages I felt like a failure because I had to give up my successful career. I felt like I had let so many people down but things had changed that were out of my control. I had 4 major bowel surgeries in the space of a year with numerous complications, which has resulted in me living with chronic fatigue syndrome. There are days I can’t get myself out of bed to go to the toilet so I’ve had to learn to pace myself and listen to my body. It’s ok to rest and you can only do what your body let’s you.
One thing I’ve taken from my journey is to love my body for what it’s gave me not what it looks like. My body saved my life. Everytime I look at my scars I see my strength and that’s why I love them.
They tell my story and remind me that I’ve been given a chance to continue it. Our bodies do exceptional things and the appearance of them doesn’t matter. Life matters.
One thing i’m going to start off by saying is thank goodness I didn’t suffer with Ulcerative Colitis throughout my school years, that is one thing I am thankful for.
I was diagnosed with Ulcerative Colitis when I was 19 years old, and by that point I was working full time. This came with its own pressures, holding down a job whilst having numerous hospital appointments and also studying for a degree part time.
My company who I worked for from the start of my diagnosis supported me so much, I never shied away from informing them what was going on and because they knew the whole picture I believe thats why I got the support I did. It’s peoples own choice whether they want to inform their employers about their condition, but for me I spend the majority of my time at work, they should know about my disease!
I told my friends at work everything, why not? I spend 8 hours a day sat beside them, they were there on my bad days, seen me in the morning after I’d had a bad night and seen me rushing to the loo 10 times a day. For me it was only right to tell people, it also helped me to know that people knew if I went to the toilet 5 times in a couple of hours it wasn’t because I was slacking off, or if I needed to rush out of a meeting I couldn’t help it. To help awareness of Crohns and Colitis in the office too I often did cake sales to raise money and put up information sheets.
Ulcerative Colitis really affected my career in the last couple of years. My job entailed site visits and meetings which were around a 20 minute drive away from my office. Not only was that a problem was you had to get buses on and off the site unless you had a valid reason for your own car and a solo driver, I luckily received a pass due to medical reasons after I had a few embarrassing moments waiting for the bus. Let’s just say i’m glad I had a plastic bag and tissues in the car and leave it there. I didn’t want to go, I put off going to site and meetings and I was so stressed and anxious every time I had to go.
I gained my Foundation Degree, but my top up to an Honours Degree which I was doing part time took a hit too. College days often landed on my infusion days at hospital, which was a problem. At one point I was having a 4 hour infusion every two weeks, therefore missing half of my college. When I went in for my operation I missed so much college and due to this I didn’t get the grades, therefore still on my last year now!
My health always came first though. There is nothing more important than your health.
Since having my ileostomy surgery in March 2019, I am proud to say I haven’t had one single day off sick, which is massive for me. I am able to travel, I can sit in meetings for hours and hours without worrying, and recently I have managed to get a new job! This for me is huge, I could not have imagined doing an interview with active Ulcerative Colitis, having my first day with new people and a total new office, not knowing where the toilets were. But, with my stoma all this was a walk in the park! I am so proud of myself for everything I have achieved in this past year with my stoma, but this just tops it.
There are information sheets available on https://www.crohnsandcolitis.org.uk which are really useful for advice with working with IBD but also information sheets available for employers, to provide them with information on how to deal with and understand employees with IBD.
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
Samantha was diagnosed with Ulcerative Colitis earlier this year, and underwent surgery to have a stoma fitted only 10 days after this diagnosis. Samantha has very kindly written up her experience for me to share!
Samantha, 29, Ulcerative Colitis. Writing is my passion – I’m an editor of a lifestyle magazine (@societyabdn if you want a nosy) and assistant editor of a local newspaper.
Ulcerative Colitis Diagnosis and Surgical Intervention
Currently I’m in week 8 of recovery since having my ileostomy surgery. Although I am still in shock at having to have surgery only 10 days after being diagnosed with an inflammatory bowel disease, I’m taking this recovery time to enjoy life at a slower pace and taking advantage of being able to to be a stay-at-home mum with my four-year-old son.
I was diagnosed with Ulcerative Colitis in July this year. My symptoms began completely out of the blue in March. Prior to this year I had suffered with bloating, but it was nothing that disrupted my day-to-day life or caused any real concern. In March I started finding that poo would practically “leak” from me when I went for a pee. This progressed to bouts of diarrhoea every single day.
Then I started having diarrhoea anywhere from 6-10 times a day and every time I passed a lot of blood. I was completely drained, fatigued, and then the urgency and pain reared their ugly heads. By my birthday at the end of June I rarely left the house for fear of having an accident. I gave up gluten, dairy, every kind of junk food… but nothing helped. My doctors diagnosed me with everything from anxiety, stress, piles to IBS. I knew something was seriously wrong and I was so frustrated with my doctors. To be honest, I thought I had bowel cancer. My nerves and anxiety were completely shook. Eventually, an out of hours doctor admitted me to hospital (even though one day prior I was told by another doctor that I wasn’t ill enough to go to hospital!). From there I was diagnosed with UC and because steroids and biologics didn’t make any difference, my colon was removed on July 21.
Having a stoma absolutely has shook my body confidence. I’m still learning so much about the whole IBD journey as it’s all so new, but Instagram and people sharing their stories has really helped me to slowly rebuild my confidence. I won’t lie, I’m still rebuilding my body confidence now too. But at the end of the day, my stoma is just one small part of my body. I read that somewhere and it really struck a chord with me – it’s literally tiny. Why should I let one tiny part of my body which only I see affect my confidence so much? I shouldn’t. That doesn’t mean that it doesn’t affect my confidence, but it helps to put things in perspective for me. My body has not only fought to keep my alive, but it’s also given me my amazing son who is 4. So for that, I love my stretch marks, scars and slowly, yeah I love my stoma too! I love it because it’s allowed me to continue being a mum to my little boy. ❤️
I’m only week 8 post surgery and I’ve already been out to a restaurant, gone for walks, taken my son to the park and booked a trip away next week. I never say this, but right now, considering how new I am to UC and stoma life, I’m pretty proud of myself. I have an amazing support network of friends and family, but I know my mum in particular was worried I might crumble after having my surgery. I haven’t – okay, don’t get me wrong, I’ve cried many days – but I’m not about to let this disease or new world I’m faced with destroy me. No way.
Well writing an entry into Kirbys blog had never really crossed my mind until this morning, but I know just how much Kirby will enjoy reading this and I have already promised not to embarrass her too much. Firstly, I would like to say just how proud I am of Kirby doing this blog and I have took real enjoyment from reading it, whenever a new entry is posted, but not only that I have learned things myself so thank you! Secondly, I would like to apologise for the abundance of grammatical errors and the inevitable spelling mistakes I am about make but here goes!
Me and Kirby have known each other all of our lives and in some ways grew up together, our parents have been good friends for years and years meaning we often spent time together at family and friends parties. Although we were not always close Kirby was always someone I looked out for and someone I always enjoyed seeing and catching up with. It was at one of these family parties that we actually got together, my cousin Amy’s 21st birthday. I turned up late after having one or two many beers beforehand but in no time I was sat with my 2 cousins and kirby, We were just chatting away as we always do but my other cousin Zoe messaged me to say ‘could you be flirting with Kirby any more’ I hadn’t actually realised at the time and it wasn’t my plan but apparently it worked. Before we knew it we were off hand in hand round the town and threw in a few pub snogs for good measure and we were more than friends!
Up to then I hadn’t really any idea what Kirby had already been through or even that she was poorly in any way, I knew she hadn’t been too well before the party but never realised to what extent! Anyway, our first date I suggested the next day to get out for a walk round a local water and grab some food after at a nice pub to cure the hangovers. Sounded great to me but I can’t imagine how difficult it must of been for Kirby, a longish drive in my car, no toilets around and then to eat before the drive home. Luckily it went great and Kirby somehow managed, although I’m sure she will have been plagued with worry all day. To me nothing would of mattered as nothing could of stopped me feeling the way I did about her. Things moved really fast with us as we didn’t have to get to know each other really, so we skipped all the nervous small talk and were really close right from the off after a week or so there was nothing worth knowing about Kirby that I didn’t already know, and nothing at all had put me off! That’s one thing with us both we shared everything and I feel like we went through things together.
What I remember of when Kirby was suffering with her colitis she never really had good days and bad they were all pretty much the same to me, she was tired a lot, in a lot of pain and using the bathroom a lot! None of this stopped us from doing anything however as Kirby really powered through but she will be the first to admit that some things we did were compromised. The compromise was never a bad thing by the way just something we had to do to be able to enjoy it! Some of this was Kirby not eating at certain times or at all to get through not being able to use the bathroom or, after a nice meal getting right back to the room so she felt comfortable! No matter where we were in the world or what we were doing nothing to me was ever effected because I was doing what I loved, travelling, with the person I loved, Kirby.
The next thing I wanted to talk about was surgery, A huge operation for someone so young to go through and although it scared the shit out of me from day 1 it was something I was so behind! From the first time it was mentioned I knew it would change Kirbys life for the better. This was going to eliminate 90% of her problems and allows her to get her life back and live it to the full. The downside was having to go through surgery which if anyone has had to endure this themselves or like me see someone they love go through it then they will understand just how hard this can be. For me I worried about Kirby everyday already but the day of the surgery I have never been as scared about anything in my life. By far the longest day and the longest 6/7/8 hours ever, I remember like yesterday trying to keep my mind off it but no matter what we did or how hard I tried I couldn’t get that sick sinking feeling out of my chest. Even after seeing Kirby 1 hour post op high as a kite and purple with bruising i never felt like it was over and that feeling of fear never left until after Kirby was home. One thing I would say is I would never change any of it and it was all okay but it is hard to explain just how difficult it was knowing what was happening!
Kirbys operation gave her an illeostomy meaning she now has a bag, this is something I haven’t mentioned yet as I almost forget that she even has one, to me now it’s the most normal thing in the world and actually such an amazingly simple thing that allows Kirby to do all the things she wants in life, I know a lot of people and especially young women would of hated having there bodies changed this much but for us and I hope Kirby doesn’t mind me speaking for her I think it’s a small price to pay to get her life back and the things that it has allowed us to do far exceed the negatives, and as I said earlier it is now normal and Kirby embraced it better than I ever thought she would and I think the fact that I am completely accepting and normal about it really helped her.
Travelling is our passion and something we dream of every day and night so when comparing before and after surgery it seems only right to use the times we enjoy the most. Since Kirby has gotten her digestive system rework there has been absolutely zero times I can remember her complaining about it, it has done nothing but improve her standard of living and both of our lives. Something that has changed Kirbys body so much has given her a normal life again and made travelling so much easier. There is no using aeroplane toilets mid take off or running up the Spanish steps to the nearest bathroom, there is no skipping breakfast or not drinking alcohol and never once has wearing a bikini been a problem!
I have so much more I could write so maybe I will get a second go at this as I know it’s all over the place but this is a start. I do want to end on saying just how amazing Kirby has always been and how modest she is about it all, she has been through some pile of ups and downs and is the strongest person I’ve ever met. Thank you for indulging me
Whilst in lock down I have used some of my time productively and finished some scrapbooks! I love looking through old photos and memorabilia and hope one day I can sit down with my children and show them all our adventures. Not only does my scrapbooks show me all my adventures it also shows me how far I have come from when I was first diagnosed with Ulcerative Colitis, and some very embarrassing moments.
I LOVE travelling, exploring different cities, lying on a beach and trying different things and I have never let my Colitis ruin this for me. Though times it has been hard and interfered a lot, but I am so grateful now with my stoma I can actually enjoy going on holiday again.
Travelling with Colitis is the most stressful thing ever, from the journey to the airport with 10 toilet stops, to the flight, foreign food, excursion days, museums. I could never really relax. Sometimes trips went well and my Colitis backed off a bit luckily, but others have been a nightmare. My first holiday with Connor was to Rome, and I must admit my Colitis was on its best behavior all weekend, the only thing that bothered me was fatigue that weekend, but we pushed through and it was worth it!
The next holiday we went on was a little bit different. The day before we were due to fly out to Krakow for the Christmas markets, I had an appointment with my Gastroenterologist, who wanted to admit me, but I really wanted to go on holiday.. so off I went with my extra case full of new medication. I spent the whole weekend searching for toilets, tired, and all in all really not very well. We tried to say we wouldn’t let it spoil the weekend, so we still managed to go to explore the salt mines, and even managed to make it to Auschwitz, after a very rough bus journey. We were the first people on the bus, and we had a couple more pick-ups along the way. Our driver wasn’t the most accommodating and wouldn’t let me get off to use the toilet, but after some sort of miracle I actually held it in till we got there. We enjoyed some excellent food, but often headed right back to the hotel after so didn’t explore the nightlife. Krakow, was then on our list to head back to when I was feeling well.
Early on in my Colitis life my family and I spent Christmas in New York, followed by a weeks cruise around the Bahamas. Paradise. I can remember New York being absolutely amazing, especially through Christmas as it was so magical, but it was a nightmare for public toilets! I spent the majority of the holiday running in to restaurants and hotels and half of the Christmas Rockette show in the toilet. One of the most frustrating things I can remember was breakfast time, I never ate breakfast in hope that I wouldn’t need the toilet through the day, so my family always used to have some amazing looking bagels from a little cafe by our hotel and I never got to experience one. I promised myself I would go back one day to experience the whole city again, and try to find that bagel shop.
So, in 2019 I took Connor as a surprise Christmas present (spoiler: I never found the bagel shop).
When Connor and I went to New York, we didn’t know it at the time but when we got home it was only two weeks before I had to be admitted for my ileostomy surgery. This highlights the fact I was in a massive flare up. So my second time in the city that never sleeps and I was suffering with massive fatigue, going to the toilet around 15 times a day, blood loss and just generally unwell. Great.
New York with a major Colitis flare up was an experience. I am a massive foodie, and New York has so much to offer, I knew once I ate I would need the toilet, so this made it hard and I did miss out. For breakfasts (just like the first trip) I wouldn’t eat that much so it didn’t ruin the day, I hardly ate at dinner whilst we were out and about, and after tea we would have to sit and wait until the initial ‘rush’ passed. By initial rush I actually mean about 5 shits. I had to sit out of half the Broadway show, whilst Connor sat and watched Pretty Woman on his own, and there was definitely one point where I wasn’t sure if I would make it across Brooklyn Bridge without having to squat and probably get arrested by one of the little bridge police cars. (If you’ve been you will know what i’m going on about, if not, google it).
The worst thing about travelling with Colitis is airports and flights. After being to some absolutely awful airport toilets (Egypt), to long airport security lines its then time for the hour (at least) long boarding and taxiing which without fail every time had me in a lather of sweat crying to Connor telling him I can’t hold it in any longer and i’m going to shit myself just before take-off. Just to clarify, I never actually did, but it is the worst feeling in the world. Thankfully now i’m just crying and sweating because I hate flying and it’s got nothing to do with me needing the toilet. I thankfully never had an accident whilst on a plane, only came close.
Handy tip for anyone travelling with an invisible illness is to go to the information desk and ask for an invisible illness lanyard! They are brilliant, a simple lanyard you wear round your neck (it’s got sunflowers on it too so it doesn’t look hideous) which highlights to airport staff you may need to go through the priority security or have a bit of extra help. I found out about this lanyard after once getting to the front of the security queue, about to get searched and the sudden urgency hit me like a brick. I had to run to a member of staff and explain quickly, I needed the toilet urgently, and I mean urgently or else.. and he kindly escorted me to a quick access toilet. After this debacle I never travel without my lanyard, it even helped us get through a three hour immigration queue at JFK airport and is really handy now with my stoma as it highlights I will be carrying medication and medical supplies.
New York was my last holiday with active colitis and no ileostomy, and looking back I honestly don’t know how I dealt with it and how I did everything I did. People always say to me how much of a fighter I am and can’t believe how much I have had to deal with, I never actually realise how much I went through and how much it affected my life until I look back on everything. I just look forward to my future plans, and i’m extremely grateful that our next trip, which is travelling India, is occurring now I have a stoma and not active Colitis. I couldn’t even bear to imagine Delhi Belly mixed with Colitis, at least now I won’t have to worry about what hand I’m eating with and using some dodgy toilets, or should I just say a hole in the ground, and with that image i’ll leave you.
Having only had my stoma for just over a year travelling with it is still a new experience so I am still learning. So if anyone has any other useful tips please let me know!
I LOVE travelling, seeing the world, relaxing next to a pool enjoying the sun, exploring new cities and eating new food. All of this was difficult when I had my active Ulcerative Colitis. I knew that once I had the operation this would all change and go back to enjoying my life, and it has!
My first holiday abroad with a stoma was a big one, September 2019. Two of our friends were getting married a week apart across the other side of the world, and we just could not say no. We arranged to go to Cancun, Mexico for 10 nights for wedding number one, then fly to Paphos, Cyprus for 7 nights for wedding number two. It worked brilliant and we had an amazing time. I knew I had to prepare myself for nearly 3 weeks away, long flights and different climate with my stoma!
leading up to the holiday and flight I was getting worried about being prepared with bags and equipment, we were away 17 nights in total so I knew I needed a lot of supplies. I accounted for 3 bag changes a day (just in case to be on the safe side!) – My handy stoma travel list:
1) Enough supplies for 3 changes a day – you don’t want to get caught out with no spare! If a flight get cancelled or delayed and stuck somewhere for an extra few nights with out bags? Not even worth thinking about!
2) A stash full of dioralyte! Absolute god send after a day in the sun or a night out on the drink! Even if you think you are drinking plenty it is so easy to get dehydrated with an ileostomy!
3) A little beach bag which is comfortable to carry around! A little beach bag that can go to the pool/ beach with you or when you’re out exploring with an emergency supply kit! You don’t want to be getting caught with a leak or anything away from the room! I had never had a leak at all until I went abroad, right in the middle of the sea on a boat trip, lovely.
4) Cute swimwear, show that bag off! I am proud of my bag and it did not stop me wearing bikinis or anything, wear what you want and feel comfortable in, but don’t hide your bag. Your bag is part of you and what you’ve been through, show it off!
One of my main worries was the whole airport experience! It’s bad enough on its own with stressing about being late, getting through the security queue then realising you’ve got three hours spare so have to spend a fortune on drinks whilst waiting!
Then it’s even worse with active colitis.. but that’s stories for a different time. I was worried about the whole airport security, irrational thoughts that they wouldn’t believe I had a stoma and was trying to smuggle drugs and they would take all my supplies and I would be left with only the one I was wearing for the next 17 days, but thankfully it was fine!
The airport staff were amazing, a few weeks before I flew I contacted the airlines and they each gave me an extra hand luggage to carry medical supplies (Which meant Connor now had four cases of mine to carry for me). I just added a letter from the hospital to put in the case just in case there was any questions but it all went perfect! I explained at security I had a stoma so they took me to a little side room and asked if they could check my bag with the swab, sorted. The worrying was all for nothing. I could go enjoy the lounge now and get drunk before the flight!
Flying with a stoma was 1000% better than travelling with active colitis, even on my long flight I think I emptied my bag once but I didn’t mind at all. So much better than having to go on the plane toilet 20+ times throughout the flight, having to get special permission to go when the seat belt signs were on because I couldn’t hold it or standing in the long queue down the aisle thinking I wasn’t going to make it. I could even have a drink or two.. or quite a few actually without worrying, this was going to be the best holiday ever.
Once we were in Mexico my stoma and bag really showed me how much I had been missing with my Colitis. I enjoyed some amazing food, drinks and could go in the pool all day and join in the pool party without having to get out for the toilet or worrying. I rarely had problems (apart from a big leakage in the middle of the sea on a boat trip, but even that was fine. I had a bag with spares packed and just went to the toilet, cleaned up, changed and back out to enjoy myself!) The only problems was I forgot to pack a spare bikini so the remainder of the boat trip had me wearing only my denim shorts, luckily it was on the way home anyways.
Always pack an extra swimwear in emergency bag!
Luckily for me having a bag really doesn’t bother me, I don’t mind how it looks and if people look at me or not, I have it for a reason and it makes my life 100X better. I didn’t care about having it out around the pool or on the beach, and throughout the whole holiday I actually forgot I had a bag half the time. I think it actually made me more confident in a way, shows what I had been through and I was proud of it. Going on holiday and wearing a bikini and having it out on show made me realise how grateful of it I am, and how much I love it.
Since then I have also been abroad for a city break, celebrating bringing in 2020 in Krakow. Having been to Krakow before in one of my worst times, where I couldn’t eat hardly anything, drink or be able to properly enjoy myself (Although I did manage to the bus journey to Auschwitz without shitting myself which was a huge acheivement) I really wanted to visit again to enjoy everything I had missed, and it did not dissapoint. My bag really has changed my life.
I cannot wait to carry on exploring the world again with my stoma. I would like to revisit some of the places I couldn’t enjoy properly with my Colitis (New York definitely being one as I could hardly eat ANYTHING and missed half of the broadway show due to being stuck on the toilet so I need to experience that again) but I also want to travel so many more new places. November 2020 we were supposed to be travelling India, hopefully we will get there next year! Looking forward to experiencing Delhi Belly with a stoma! (If anyone’s got any tips with that please share, I would be very grateful!)
Firstly, a bit of clarity, I have an ileostomy which is where my small bowel has been brought through my abdomen and the waste which come out of this gets collected by a bag.
Ileo – comes from the word ileum, which is the end of the small intestine which has been brought out.
Ostomy – is the posh word for the opening, my stoma.
Because i’ve had my large bowel removed, and the purpose of the large bowel is to absorb water into the body, I have to be really careful with my fluid intake as I can dehydrate really easy. With my body not taking in fluids like the normal persons body, my output from my stoma into my bag is very loose, this means I can have a drainable bag… so when the bag gets full and I need to empty I can just drain it.. easy as!
I had done so much research about everything before my operation (even got sent a fake stick on stoma to practice putting a bag on) but nothing could actually really prepare me for the fact I was going to shit from my stomach and have to wear a bag attached to me for the rest of my life!
The day before my surgery the lovely stoma nurses at the RVI came to mark me up – they put two big marker pen dots on my abdomen to make sure the surgeons knew where to go, reassuring. But the real fact is that everyones body is different, some stomas sit high, some sit low so we experimented with different clothing/underwear/how I sat to make sure the end position of my stoma was going to be in the right place and comfortable for me. This photo below is the last photo I have of my body with no stoma, it’s so weird to see now! The photo was also our whatsapps group icon for about 6 months after.. not sure why!
The nurses stated that even though I was marked up, during surgery if there were complications or when they got in there, those positions weren’t possible my stoma might not be exactly in the planned position, so this worried me a little bit for when I woke up what if it had gone wrong and it wasn’t going to be comfortable and I would never be able to wear jeans again, but when I woke up from surgery I honestly couldn’t have bothered any less. Drugged right up and didn’t even realise I had a stoma till the doctor came round to check.
Before I go off topic I also wanted to show you how a stoma is actually formed in surgery, I find it so interesting! The photo below shows it alot better than any description I could do, so I’ll let that do the talking, but I can’t believe that’s how my little stoma was formed! Im proud! Right after surgery it was so bruised and swollen but you’re reassured that honestly it will get better, the stoma will retract and hopefully if you’re lucky go in a nice circular shape so its 100% easier to cut bags.. and mine did just that, im so happy with it, it’s just cute and little! Photos are below.. so if you don’t want to see a real life stoma do not scroll down!!
And there we have it, how my stoma was formed, what my stoma actually is and a lovely photo of it! I hope if you didn’t know about stomas you have learned a little bit, and if you did already know about them.. I hope I got my facts right!
The amount of times i’ve spent in hospitals and being admitted is ridiculous. i used to brag a few years ago that I had never been in hospital; never broke a bone, never been poorly, well guess who’s not laughing now.
The first time I was admitted in hospital was an eye opener. Sunday 19th March 2017, I had been diagnosed around 5 months and never really had a good day, but for me I just got on with it, thought it was something that I just had to deal with now!
I went into A&E through night with the worst pain i’ve ever been in, Dr Valentine (honestly) assessed me with the usual questions “how many bowel movements a day?” “what are your bowel movements like?” “Have you noticed any blood in the stools?” To which I replied, of course, I go around 10 times on a good day and there is always blood… but thats just normal for me.
“You call that normal?”
Trust me, now I know, that’s not just normal and it was always etched into me. It is not normal.
I spent my first week in on a max dose of the usual prednisolne and because I’d been losing that much blood a good old iron and potassium infusion! Luckily I was in my own little room with my own toilet, where my Mam could visit whenever she wanted and bring me nice snacks and company! Sounds like a holiday camp, I knew I was going to have to get used to this, it certainly wasn’t going to be my last time.
I’ve since been in multiple times, to different hospitals. Whitehaven, Carlisle and Newcastle RVI, it’s nice to try different hospitals, different scenery but each time a new set of friends made.
I could go on all day about the people I’ve met whilst being on different wards. I liked being in my own room, and sometimes that was essential (like when I had to have a commode as I was going on toilet about 30 times a day, and I was not comfortable with 5 others watching me do that) but I like being on a ward for the conversations and it stops it being so lonely.
It goes from the lovely Lillian who kept waking me up through night as she believed there was a dog licking her hand (definitely dreaming), to the wails of Frank who managed to wake up at 8pm every night and then fall asleep at 7am the next morning, Bernadette and her carers who put me and Connor on to our favourite Thai Van in Carlisle Viaduct carpark (Shoutout to the Pad Thai strEAT food).
In my last visit to the RVI for my sub-total colectomy, I was in for 15 nights, made bearable by every single person on the ward, I will never forget any of you! (Apart from the woman opposite who complained she couldn’t get any sleep when they discovered through night I fell ill with an infection and had to keep coming in to monitor me and whizz me off for emergency CT scans, honestly I would much rather have been getting some sleep too.)
This is me, Kirby Johnston, 23 from Whitehaven, Cumbria.
Jesus it’s like a CV isn’t it, honestly it’s not all going to be as boring as that, but formalities first!
Not really sure about this, but here goes! I will (hopefully) be bringing you an insight and some stories about living life with Ulcerative Colitis and and ileostomy!
My goal is to spread awareness of the disease and break the taboo. We all use the toilet, some more than others, but nobody seems to want to talk about it! It’s embarassing to talk about, but it really shouldn’t be. I remember the first time I really noticed something was wrong, it was just after I came home from a family meal, May 2016. My Dad actually suffers with bowel problems, Crohns, and when I was 16 he suffered a perforated bowel leaving him with a colostomy. Since then he has had it reversed but as a family we were all aware of the disease. Therefore, when I went on toilet that night after the meal and noticed some blood in the toilet, I knew right away something was wrong and after telling my parents a doctors appointment was booked for the next day.
Alot of people have problems getting the doctor to take them seriously and it’s awful to say it but believing just how bad it is. When I went to the doctors that next day I went through my symptoms, told them about the blood and it just felt like they were going to chase me off, but as soon as my Mam mentioned my Dads history, something just switched on. I had to take bloods and stool tests and then I am pretty sure when they came back I was referred to a gastroenterologist for more tests (the dreaded camera). I had my official diagnosis of Ulcerative Colitis in October 2016, when I was 20 years old.
So there we have it, thats my story… ha, I wish, thats just the very start of my story and let me tell you there is so much more to go!
It’s hard to explain Inflammatory Bowel Disease (IBD) unless you actually live with it 24/7, actually I would say it is unexplainable. Unpreparable too, nothing could ever prepare you for living the rest of your life with an incurable disease, but everyones cards get dealt and sometimes you don’t get the hand you want.
I have got so many ideas I want to write about in this blog, I want to tell my story, every single detail. But, there is so much to go through so i’m going to need some help.. I need to know what people are interested in, what people want to actually know, there is so much to tell… well 4.5 years worth of living with a chronic illness to be exact!
The dreaded steroids
Working with IBD
Relationships with IBD
So please tell me if you like what i’m talking about, share it around, get my story out there! I just want to help, even just one person feel like they aren’t alone in what the are going through 💕