Okay, so some people may say it’s not proper camping if it’s in a van but here we go! After the wonderful Covid-19 reached us last year and myself and Connor realised going on holidays abroad wouldn’t be achievable for a while, we went and bought a van! Our first adventure was to Bellingham in Northumberland for two nights where we explored the local two pubs and spent the wettest day of the year (which in the North means it’s very wet indeed) walking down Hadrians Wall (we aren’t the greatest at planning around the weather). As we live in the Lake District for the next few months in local lockdown we were lucky enough to visit some local places and sights we had never seen, despite living here for 24 years.
Last weekend we expanded our horizons and visited the North-East for 4 nights! We travelled to Bambrough, Berwick-upon-Tweed and Alnwick finishing the trip with a visit to Ikea. At the minute due to the restrictions campsites aren’t allowed to open their facilities, toilets included, and you must be self-sufficient. So off we went with our fancy shower (a plastic bag to hang off the back of the van) and a nice porta-potty! I was very thankful for the bag this weekend, I don’t mind the odd nature wee but I’ve done enough nature poos to last me a lifetime.
Some tips for camping with a stoma (especially when no toilets):
pack PLENTY of supplies! We were away for 4 nights, so I packed 10 bags (two per day and a couple extra in case of emergencies). Some may say that is over the top as I generally change my bag once every 2/3 days, but it’s always better to be prepared and they take up no room.
Air freshener! My bag smells like any normal persons poo (although Connor disagrees and says it’s worse) and even though I wasn’t emptying it in the van, I do change my bag in there which doesn’t actually smell as bad.
Black bags!! These are vital! with no toilets, and definitely no number twos allowed in the porta-potty I empty my bag into a black bag, tie it shut, bin it and no-one needs to know.
Headtorches! As a few points above, I don’t empty my bag in the van and I do empty it in to a black bag which can get quite messy at night! I keep a head torch handy for through night so I can keep both hands free for bag emptying!
Use public/pub toilets at any chance. Out for food or drinks, even if your bag is only partially filled, you might as well empty it while you have the luxury of a toilet!
Thankfully my stoma behaved massively, the weekend was a success! I ended up changing my bag every day in the morning, and this also just helped me not have to think about emptying. we walked for miles and not once was my stoma an issue. Two years ago the thought of going away camping without a toilet would have killed me, I just physically could not have done it.
Ok, so Barbie Bum isn’t the correct medical term, it’s the outcome of Protectomy surgery (removal of the rectum and anus) and it’s commonly called this as when these are removed the site is closed up surgically! This would be my next step if I was to have a permanent stoma.
However, there is another option, the J-Pouch (or more commonly known as A proctocolectomy with ileal pouch-anal anastomosis) which involves constructing a ‘pouch’ using the small intestine in my case, which will attach to my rectum which is still intact and perform as a working bowel. With this option my stoma would be reversed and I would use the toilet as normal again.
So there’s my two options for my future, but it’s not as easy as just picking to get to get rid of my bag. Both options have their pro’s and con’s and it’s each individuals person preference!
For example, the J-Pouch, due to invasive surgery in the lower abdomen has a risk of fertility issues, increased number of stools a day, urgency, diarrhoea. These risks for me are not worth it and my stoma has became a part of me, currently my decision would be to make my stoma permanent and have my rectum and anus removed, but this may not be the case for all.
The lovely Nicola and Donna have both shared with me their stories about the path they went down to give me some support for my future and spread awareness to others who may also need help in their decision.
Nicola – Hello everyone, my name is Nicola Rowson and I have Ulcerative Colitis. I am a single mum to my 9 year old daughter who has fought battles with anxiety since my diagnosis and hospitalizations. I unfortunately had to leave my previous employment due to the amount of time off that was needed due to my surgeries. I enjoy going to the gym when able to, baking too, also building the local support network is a big passion for me. I was first given the diagnosis of Ulcerative Colitis in 2013.
Donna – My name is Donna Cusack. I’m am a 41 year old veterinary care assistant from Belfast. In 2016 I was admitted to hospital and diagnosed with sudden onset ulcerative colitis and a couple of weeks later when medication didn’t work I had a total colectomy with a temporary ileostomy.
What operations did you go through to get to where you are now?
Nicola – On my journey, I have had a total of 4 surgeries. My first one was a laproscopic subtotal colectomy in which my large intestine was removed, the end of my small bowel brought through my abdomen to create my stoma, and at this point my rectal stump was left in tact. Due to complications arising from this surgery I then had to have incision and drainage of a peristomal collection with refashioning of the stoma. Some time after, I started experiencing issues with my stoma and my rectal stump was causing issues at this point too. I transfered care to Newcastle for my last surgery and had a completion proctectomy with revision of ileostomy to the left and hernia repair. My barbie butt was formed.
Donna – (Post Ileostomy Surgery) Over the next 3 years I had a further 2 surgeries to create and takedown my j pouch.
What was your operation recovery like or are you still recovering?
Nicola – Recovery from the completion protectomy wasn’t half as bad as what I was expecting to be totally honest with you, I was out of hospital in a week. It was uncomfortable more than actually being painful. Taking it slow and steady was the main priority and slowly easing myself into sitting down onto a soft padded cushion and a few extras for the height. Overall recovery probably took me about 6-8 weeks and by this point I could sit down comfortably, move around easily and I was all healed up nicely.
Donna – I thought my 1st surgery was bad because I was so ill prior and was in hospital for 5 weeks after with complications and sepsis and had 8 months off work but step 2 was way worse! I was in hospital for several weeks with complications and 5 months off work.
Do you have any symptoms now?
Nicola – I sometimes experience phantom rectum pain where I feel like I need to sit on the toilet, but this usually passes pretty quickly and doesn’t happen very often. My main symptoms to date are still from UC in general with bad fatigue and occasional stomach cramps. I have also experienced the occasional blockage of my stoma, but thankfully these have eventually passed at home.
Donna – I suffer with inflammation in my pouch if I eat foods that don’t agree with me and night time incontinence is a factor. I can’t eat all the foods I could with my ileostomy but overall I have no regrets and would never want the bag back for me personally.
How is your life now with a barbie bum/ J-Pouch compared to before?
Nicola – Life at present is so much better than my life had been previously. I finally have the freedom to enjoy myself without constant worry, and be the parent I couldn’t be beforehand.
Donna – J pouch life is a whole new set of problems than when I had my bag. I despised my bag mentally and it gave me lots of body confidence issues and skin issues which is why I opted for j pouch surgery over a bag for life. But I felt physically healthier with my bag than I do with my j pouch.
What is your biggest advice for someone who goes down either a J-Pouch or a Barbie Bum route?
Nicola – My biggest piece of advice to anyone facing barbie butt surgery is,that yes it can take an emotional toll on you and can make you feel a little self conscious (I mean how do you tell someone you have no real bum) but your health is your number one priority so you do what you’ve got to do for you and recovery is only temporary. It will pass and life will carry on.
Donna – My biggest piece of advice for anyone wanting to make the transition from stoma to j pouch is to be prepared for a bumpy road. No two j pouches are the same and you have to find what works for you. You need to have a lot of patience and make a lot of sacrifices physically and with regards to diet. In my opinion if you are 100% happy with a bag and have no issues then I wouldn’t put yourself through getting a j pouch as it can be unpredictable and there are no guarantees with it.
You can follow both Nicola and Donnas stories on their instagram pages linked below!
One of the many misconceptions regarding IBD is that surgery is the cure. Of course it helps tremendously and may seem like it eradicates the disease but unfortunately it is not a cure, there is no cure for IBD, yet.
IBD is an autoimmune disease meaning the immune system, which is needed to attack any foreign cells in your body fighting infections and viruses, actually doesn’t function properly and attacks all my healthy cells instead. Great.
Due to IBD being an autoimmune disease, even though my immune system attacks my large bowel, it also affects other parts of my body too as a whole. As my body is constantly fighting itself, a huge part of my disease is fatigue. Now this isn’t just feeling tired or having a lazy day, it’s being physically exhausted to the point where you cannot stand up or do anything.
There are many forms of IBD but the two most common are Ulcerative Colitis (UC) and Crohns disease, I suffer with UC. These two diseases are very similar but differ in location. Crohns disease can affect the whole digestive system, from mouth to anus, in patches, whereas UC only occurs in the large bowel.
IBD can cause many other symptoms other than the typical toilet problems. For example, due to loss of blood in stools I have suffered with anaemia in the past, and a big problem is from side effects from medication. The most common medication given to anyone with an IBD flare up is steroids. For anyone who’s ever been on long term steroids will know that they are the devil. How can a small little pill cause so much damage to the human body?! Steroids cause hair-loss, fatigue, weight gain, mood swings and can reduce bone density if on long term. For me my bone density reduced and caused mild osteoporosis. So, not only do you have to deal with the IBD all these other things just come along for the ride.
These side effects from drugs can be troublesome for years, causing wider problems. Just another thing for us to deal with.
So, I still have my rectum intact. The removal of this is often done in a separate surgery to the removal of the large intestine, due to a factor of reasons. One is that it would be a massive surgery if so, another being the fact that removing the rectum can cause a higher risk of infertility due to the location, therefore the doctors and surgeons like to perform this next step at a later date.
I still have UC in my rectum, of course it’s no where near as bad as when I had my large bowel but I still sometimes suffer. I still pass mucus and blood from my rectum, and still need to sit on the toilet to relieve this, and especially after having alcohol I can feel my rectum becoming more irritated. When I do get my rectum removed, if I end up going down that route, I will still feel the effects of UC without having the bowel problems. I will still have a dodgy immune system, theres no way to remove that, but it’s a hell of a lot better without all the toilet troubles.
So sometimes I still do have bad days, but it’s rare, unlike when I still had my large bowel it was the good days which were rare. But I will never be cured, but that’s fine, i’ve learned to live with it and will continue to learn and understand that this disease is a part of me and nothing can change that.
Surgery hasn’t cured me but it’s made me a hell of a lot stronger.
This is a hard post for me to share to the world; it is quite disgusting in places and i’ve tried to make it light hearted, but it’s also very real, and that’s why I think I need to share this story.
March 2019 – I had tried every single medication possible for colitis, I had my appointment with my gastroenterologist where we discussed my next step, surgery. I was prepared, I knew it was coming and thats what I wanted, I felt like I had give every medication my best shot and now it was time. I left with a fake stick on stoma, bags to practice using and a tonne of information, knowing sometime in the next few months I would be called in to have my bowel removed.
One night a few weeks after this appointment, I just fell suddenly unwell, I was vomiting and had the worst diarrhoea I had ever had, which is saying something because I hadn’t had a formed stool in 3 years. I was in so much pain it was honestly excruciating. My Mam and Dad had been on holiday and luckily they had just arrived back that night, we called 111 and got asked to go into A&E.
I had been in hospital a few times prior to this, always either going in via A&E or going to a routine appointment with the consultant and being kept in, so therefore I always had a hospital bag packed. My little bag which I could grab quickly packed for a couple of nights admission. I can remember thinking I wonder if this is it, will I need the operation today?
This night was also the night when I realised my boyfriend, Connor, was the real deal. I mean, I already knew this but after being together for less than a year watching him clean my shit up from my Mam and Dads landing when I could barely stand up and make my way to the toilet any more, I thought to myself i’ve got a good’en. That was it, my last ever poo at home, on the upstairs landing.
I somehow made it to the hospital with no accidents, to be greeted by the usual tests and nurses and doctors and a million questions. I was really grateful for the anti-sickness tablets but that didn’t stop the diarrhoea. I jumped out of my own little room and ran into the centre pod where all the nurses and doctors were sat, desperate for the toilet, and at that moment my bowel just gave up. I was stood frozen solid, Connor had come up behind me and I just stood there. The doctor came over and said ‘Do you need the bathroom, do you feel sick?’ I just looked round at Connor and then down at the floor. The puddle of diarrhoea around my feet was growing and I couldn’t physically stop. The doctor looked and the moment of realisation hit and he just went ‘Ohh diarrhoea’. It’s one of those moments we laugh about hysterically now, but at the time I was mortified. I was going to be known as the girl who shit herself in the middle of A&E.
That was it, my last poo in Cumbria, on the floor of A&E.
I got given the diagnosis of Gastroenteritis that night, a measly bug which had left me feeling dead, and from there I left my local hospital and was transferred to my Gastroenterologist and surgical team at the RVI, 96 miles away.
Due to being branded with Gastroenteritis, which was basically like the plague in hospital, I was given my own little room and luckily a commode at the RVI and I spent 6 nights recovering from the bug before I was wheeled in for surgery. They couldn’t operate whilst I was poorly as my body would be too weak and also as I wasn’t classed as an emergency I had to wait and take each day as it came and wait for a surgical slot to come free. Each morning I would be nil-by-mouth incase I was on the list that day, and after 6 days the morning came! That was it, my last poo ever and it was on a commode.
I can remember that morning my Mam, Dad, Connor and brother Harvey came to wish me luck and I was wheeled off at around 11.30am. I opened my eyes again around 7.30pm in the High Dependancy Unit, pumped full of morphine and just coming round from anaesthetic I can’t really remember that much. I didn’t even think about my operation and it was a good few hours until I actually remembered why I was there and checked to see if everything had gone to plan. I wasn’t phased at all when I looked down at my stoma, i’m not sure if thats just because I was high as a kite or because I had done so much research and knew exactly what to prepare myself for when this time came. I was ready for a whole new adventure and life with my ileostomy and my first night of not having to worry about needing a poo.
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.