Guest Blog by Connor Hodgson

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

Connor

Holiday Blues

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).

Night after watching Pretty Woman on Broadway, after Con found me at the end hid in the toilets we went back to the room and relaxed with donuts, chips and candy!

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.