Hi! My name is Julia (friends and family call me Joules), I am 28 years old, live in Munich, Germany with my boyfriend and cat, and I have ulcerative colitis.
My symptoms started back in 2013 with a horrible anal fissure that put me straight into hospital (yep, no sugar coating here from the beginning…). As a 20-year-old college student, who was all about partying at the time, this whole experience (e.g., literally needing my mom to help me go to the toilet) was very traumatic and affected not only my physical but also my mental health greatly thereafter. I got very insecure about going out with friends and became a more and more introverted and private person, especially since I felt I couldn’t tell anyone about my struggles (it seemed too embarrassing at the time).
I suffered from severe diarrhea and/or constipation in the following years, got tested for all sorts of food intolerances and tried various diets, got told I was having an eating disorder, that I should “just eat more”, or that it was “just the stress”, that it would become better after my bachelor’s thesis (and then after my master’s thesis…), got sent into therapy for an anxiety disorder, and was ultimately diagnosed with IBS.
Around Christmas of 2018 I started bleeding quite heavily (having ignored there being mucus for a while before) and was scared that it could be another anal fissure. I reluctantly went to the doctor after the holidays and the inflammation was so severe by then that I pretty much got diagnosed with ulcerative colitis right there on the spot (my calprotectin being at 7,000 at this point). “Finally,” I thought, not knowing what that actually meant, just happy about having a diagnosis that felt real to me. As the inflammation was so severe, we thankfully started with infliximab pretty soon thereafter (summer of 2019), which did help me a lot in the beginning but also came with a whole bunch of side effects. I caught infection after infection and lost my very first “real” job after college due to too many sick days and “being a risk to the company” (as my boss nicely put it…). Being an honors student with high aspirations, I was devastated and my mental health deteriorated. Luckily, I could seamlessly start working as a content marketing manager at my dad’s company where I experience a lot more understanding for my condition.
As infliximab stopped working for me after 1.5 years, we tried Entyvio next (end of 2020). However, my symptoms got worse and worse in the past months, my calprotectin was back at 2,000, I got put on prednisone, and the last colonoscopy showed severe inflammation/ulcers in my rectum. This is pretty much where I’m at right now (summer of 2021), waiting for my loading dose of Stelara in August, hoping for it to work!
As the last months were particularly hard on me, I also started an Instagram account @colitisandmorefun dedicated to my daily ups and downs with ulcerative colitis, which helped me connect with a lot of fellow “spoonies”/chronic illness warriors and finally made me feel less alone with my struggles. 🙂
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.
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