Soph | IBD/POTS/STOMA& co🦓 (@cep_soph)

Welcome to the 105 Chronic Diaries 💞🎀✨ Tomorrow, I’m having pretty life-changing surgery, and honestly, I have no idea what the next 105 days are going to look like. 🥹 I’ve always loved the idea of committing to something like 75 Hard or 75 Soft, but living with multiple chronic health conditions has taught me that my body doesn’t always follow the plans I make for it. Some days I can move, exercise and feel like myself. Other days, simply getting through the day is an achievement. 🤍 So, welcome to my version: 105 Chronic. ✨ 105 days from surgery to January 2027 ✨ This isn’t about pushing through pain, forcing productivity or meeting unrealistic expectations. It’s about learning to be kinder to myself, rebuilding my physical fitness gently and nurturing my mental health, whilst accepting that progress won’t always be linear. With my background as a Clinical Exercise Physiologist, I’ll be using my knowledge to help my body move and rebuild strength in a way that works alongside my chronic conditions, not against them. With continued therapy, I’ll also be working on my relationship with myself, learning to rest without guilt and finding ways to care for my mental health through everything this journey brings. I’ll be documenting the good, the bad, the setbacks, the small wins, the tears and everything in between. 🎀 Because I want to prove to myself that even though my body has changed and life looks so different from what I imagined, there is still hope for a better quality of life. This isn’t about becoming a completely different person. It’s about learning to love, support and nurture the person I already am. 🫶🏻 Here’s to 105 days of healing, growth, movement, self-compassion and finding little pieces of myself again. 💗 Let’s see where this journey takes me. 🦋 #105Chronic #ChronicIllness #ChronicIllnessJourney #PostSurgeryRecovery #POTS

Day 1- op was a success, thank you everyone so much for all the lovely kind messages. I will get back to you all soon 💖 #stoma #ileostomy #stomabag #105chronic #hospital

Day 34🫣

Experiencing the magnetic insertion of my NJ tube, now twice in two days🧲 This was filmed before my tube completely kinked and blocked yesterday, meaning another trip back to hospital for it to be reinserted and replaced. Along the way, I learnt some fascinating things about my anatomy. Apparently, my small bowel sits higher up into my chest than my stomach! Thanks, hEDS, for keeping things interesting. 😂 It also meant I got to experience the CORTRAK 2 Enteral Access System, which my hospital has recently started using. It uses real-time electromagnetic tracking to guide NJ tube placement at the bedside. As someone who has needed tube placement, seeing this technology in action was genuinely fascinating. From a patient perspective, having a guided bedside placement option is a really interesting alternative to needing an endoscopy for tube insertion. Chronic illness really does mean learning about your own anatomy in ways you never expected! 💜 #Gastroparesis #NJTube #FeedingTube #EDS #crohns

Yep back to the hospital…. Tube blocked 🫣 #ngtube #njtube #hosptial #feedingtube

Why I’ve gone from an NG tube to an NJ tube 🤍 Gastroparesis means my stomach struggles to empty food and fluids into my small bowel at a normal rate. For me, this has meant struggling to tolerate food, sickness and relying on tube feeding to help meet my nutritional needs. An NG tube delivers nutrition directly into my stomach, but when your stomach isn’t emptying properly, feeding into it can worsen symptoms and become difficult to tolerate. An NJ tube bypasses the stomach completely, delivering nutrition directly into the jejunum, part of the small bowel. This means my feeds can bypass my stomach and hopefully be better tolerated. It’s another adjustment to life with chronic illness, but the aim is to give my body the nutrition it needs while managing my gastroparesis and wider gastrointestinal dysmotility. It’s not a cure, but hopefully it’s another step towards getting the nutrition my body needs. 🤍 #Gastroparesis #NJTUBE #NGTube #TubeFeeding #ChronicIllness

My Disclaimer & Approach to Collaborations💖 I’m passionate about working with brands, businesses and services that I genuinely believe in and feel align with my values and lived experience. I’m also the first person to decline a collaboration if I don’t feel a product or service is right for me, or if I don’t believe I’m the right person to represent it. As someone living with multiple chronic conditions and working within the NHS, I understand how overwhelming it can be to navigate health information, products and services, particularly when you’re already vulnerable and searching for something that might help. I’m naturally sceptical of health and wellness claims, and I want my community to know that I take what I share seriously. Where I discuss a product or service, I aim to: 1. Research its suitability and relevance to my own conditions and circumstances. 2. Share my genuine experience and honest opinions, including when something hasn’t worked for me. 3. Be transparent about any gifted products, paid partnerships, affiliate links or other commercial relationships. 4. Keep my personal content and any collaborations entirely separate from my NHS employment. My content does not represent, endorse or constitute advice from my NHS employer. Important: My content is based on my personal experience and research, alongside my professional background where relevant. It is for general information and awareness only, not individual medical advice, diagnosis or treatment recommendations. Everyone’s circumstances are different, and something that helps me may not be suitable for someone else. Any views expressed are my own and do not reflect the views of my NHS employer. My NHS role, professional responsibilities and employer policies remain separate from my personal social media activity. I cannot guarantee that a product or service will be effective, safe or suitable for others, and sharing my experience should not be interpreted as a guarantee of outcomes or a substitute for advice from an appropriately qualified healthcare professional. I aim to comply with applicable advertising, consumer protection and professional requirements, and I will clearly disclose relevant commercial relationships. My priority will always be honesty, transparency and the trust of the people who follow my journey 💖#CapCut

Is this something you get used to when you still have a rectum? I forgot to post this last week I’m actually 5 weeks post surgery tomorrow 🤯 #stoma #ileostomy #loopileostomy #colostomy #bowels

🩸 POTS & PERIODS 💗 Why do symptoms get worse for some of us? If your POTS flares before or during your period, you’re not imagining it! Hormonal fluctuations can influence blood vessel function and fluid regulation, potentially making it harder to maintain blood flow when upright. Add period pain, fatigue, headaches and blood loss, and symptoms like tachycardia, blood pooling, dizziness and presyncope can feel even worse. 🫠 📚 The research: • Peggs et al. (2012) found light-headedness in women with POTS was greatest during menstruation. • Boris et al. (2025) found 72.4% of surveyed young women with POTS reported worsening symptoms before or during their period. 🔗 Studies: https://pubmed.ncbi.nlm.nih.gov/22721633/ https://pmc.ncbi.nlm.nih.gov/articles/PMC12283190/ Every body is different, and researchers are still investigating exactly why symptoms fluctuate. Heavy periods can also contribute to iron deficiency, so don’t dismiss significant changes as “just POTS”. 💗 Does your POTS get worse before your period, during it, or both? #POTS #Dysautonomia #POTSAwareness #PeriodHealth #ChronicIllness

Dizziness + high stoma output made today’s bag change a whole lot harder than it needed to be 🫠 I tried doing it sitting down to manage the dizziness, but everything that could go wrong, did. Ran out of adhesive remover spray at the worst possible moment, lots of bleeding, and then constant stoma output making an already difficult change even harder. 😭 Somehow, I managed to get a 15-minute bag change down to 50 second video! I’m also checking the size of my stoma again as my stomach has shrunk even more, so making sure the bag still fits properly is really important. The reality of stoma life is that even the simplest tasks can be exhausting, unpredictable and messy. Learning to adapt, figuring out what works for my body and taking things one change at a time. 💗 #StomaLife #IleostomyRecovery #ChronicIllness #POTS #105ChronicDiaries

1. Looking fine doesn’t mean feeling fine. You can’t always see the dizziness, pain, nausea, exhaustion or symptoms I’m fighting just to get through the day. 2. My good days don’t mean I’m better. I can go out, smile, spend time with family and enjoy myself, but that doesn’t mean I’m not chronically ill. You don’t see what it takes to get there or the recovery afterwards. 3. Rest isn’t a choice I make because I’m lazy. Sometimes my body simply won’t let me do more. Pushing through can make my symptoms worse, and learning to rest without guilt has been a journey in itself. 4. I grieve the life I thought I’d have. Living with multiple chronic illnesses means constantly adapting, missing out and letting go of things I once took for granted. I can be grateful for what I have and still struggle with what I’ve lost. 5. Believe me, even when you can’t see my symptoms. Not every symptom shows up on a blood test, scan or in the way I look. I shouldn’t have to prove how unwell I am to be believed. Invisible doesn’t mean imaginary, and being dismissed can hurt just as much as the illness itself. Living with POTS, Crohn’s disease, hypermobile EDS, gastroparesis and now recovering from stoma surgery has taught me that you never truly know what someone is going through behind closed doors. Please be kind. Believe people when they tell you they’re struggling, even when you can’t see it. 🤍 #InvisibleIllness #ChronicIllness #POTS #CrohnsDisease #hEDS

Day 33/105 🤍 | NG tube out, NJ tube procedure day on 21st October Today was all about removing my NG tube ready for my NJ tube procedure. Another step in the ongoing journey of managing my gastroparesis and getting the nutrition my body needs. Recovery is full of little steps that might not seem like much to other people, but mean everything when you’re living with chronic illness. One day at a time, one hurdle at a time. 🫶🏼 #105ChronicDiaries #Gastroparesis #FeedingTubeJourney #ChronicIllness #SurgeryRecovery

Day 32/105 🤍 Managed a walk around Chasewater today! 🚶🏼‍♀️ After around 10 minutes, my symptoms started kicking in, so we sat down to let them settle before slowly making our way back to the car. Afterwards, I was really shaky, dizzy and felt faint, so I got some sugar, put my feed on and ended up sleeping for hours. It’s a reminder that as my physical activity increases, so does my need for rest and recovery. Progress isn’t just about doing more; it’s also about recognising when your body needs you to slow down and giving it the time it needs to recover. Little by little, at my own pace. 🤍 #105ChronicDiaries #ChronicIllness #POTS #EDS #StomaRecovery

Sleep or empty 💩 bag 🫣

Yep I sent t back in a lilys kitchen box 🤣 they still claimed an item that clearly had the label on was used too so wouldn’t refund. (I know I should support fast fashion so it’s my own fault) 🙃 #shein #return #temu #fastfashion

I’ve had a few DMs asking about this test, so I thought I’d reshare what a proctogram is and what it involves. 💗 Mine was an X-ray proctogram, which is an investigation that looks at how your rectum and pelvic floor work when you’re trying to empty your bowels. I’ll share a little more about my experience to help explain what the test involves, why it’s done and what doctors can learn from it. The more we talk about these investigations, the less daunting they can feel for someone who might be waiting to have one themselves. 💕 #Proctogram #PelvicFloorDysfunction #RectalProlapse #BowelHealth #ChronicIllnessAwareness

A whole month of my stoma Polly 💖 #stoma #surgery

THIS IS NOT AN AD… just advice as I’ve had so many DMs about the difference in size of these two open bags 🫶 #stomabag #stoma #coloplast #salts #ileostomy

🩸 Why do hEDS and POTS cause blood pooling so quickly, even when you’re hydrated? With hEDS, changes in connective tissue may mean your veins stretch more easily, allowing blood to collect in your hands, feet and legs. With POTS, your autonomic nervous system may struggle to constrict blood vessels effectively and maintain blood flow back to your heart when you’re upright. Add warmth into the mix and things can get worse! 🥵 Heat causes blood vessels to widen to help your body cool down, which can increase pooling and trigger a racing heart, dizziness and presyncope. 💧 Being hydrated helps, but it doesn’t automatically fix problems with blood vessel constriction, gravity or autonomic regulation. This is why I can be drinking plenty and still experience blood pooling so quickly. It’s not always as simple as just drinking more water! #POTS #hEDS #EhlersDanlosSyndrome #Dysautonomia #BloodPooling

Day 29/105 🤍 Please can we remove the stigma around disabled toilets? ♿️ Yesterday, whilst enjoying an hour out with my mum and auntie, I walked out of a disabled toilet to a look that honestly made me feel horrible. Being judged for using a toilet you genuinely need is something nobody should have to experience. I was emptying my stoma bag, and having access to a toilet with a sink inside the cubicle and enough space to manage everything hygienically is so important. It isn’t just about having somewhere to go to the toilet. It’s about being able to manage your disability, medical needs and personal care safely and with dignity. Not every disability is visible. You cannot tell someone’s medical history, symptoms or needs just by looking at them. You also don’t know what someone has to do to manage their condition behind a closed toilet door. Disabled toilets exist for people who need them. You shouldn’t have to look visibly disabled, explain your medical history or justify yourself to strangers to use a facility that helps you manage your health. Please be kind. You never know what someone is dealing with, and nobody should be made to feel ashamed for meeting their own basic needs. 🤍 #Day29 #105ChronicDiaries #InvisibleDisability #DisabilityAwareness #StomaAwareness

🤍 Mental health matters. Talking matters. And asking for help is a strength, not a weakness. @The Wren Project Living with an autoimmune condition can take a huge toll on your mental health, too. The uncertainty, the physical symptoms, the impact on your everyday life and the feeling that your body is constantly fighting against you can be a lot to process. Getting support alongside your physical healthcare can make such a difference. It doesn’t mean your physical symptoms are “all in your head”. It means your mental wellbeing deserves care and support, too. 🫶🏼 If you’re struggling to find support, please look into The Wren Project. 🤍 They offer free, volunteer-led emotional support for people living with autoimmune conditions. You don’t have to wait until you reach breaking point to talk to someone, and you don’t have to navigate everything alone. As someone living with multiple chronic health conditions, I’m learning that looking after my mental health is part of looking after my overall health, too. 💗 Please share this with someone who might need to hear it today. #MentalHealthMatters #TheWrenProject #AutoimmuneDisease #ChronicIllness #InvisibleIllness

Day 28 💖 #105chronic #recovery #recoverytiktok #recoveryjourney

This isn’t medical advice, just sharing my personal experience of recovery after surgery. 💛 I have two degrees in exercise science and work as a Clinical Exercise Physiologist in cardiac rehabilitation, so I have the knowledge and experience to understand which exercises are appropriate for me. But I can’t speak for everyone, even if we share the same conditions. Our bodies, symptoms and recovery journeys are all different, and what works for me might not be right for someone else. I’m simply sharing my journey to hopefully inspire someone else not to give up on themselves because of their conditions. 💪🏻 Progress doesn’t have to be perfect, and it certainly doesn’t mean pushing through when your body needs rest. It’s about finding what works for YOU, celebrating the little wins and remembering that you’re still capable of making progress, even when life looks different to how you imagined. ❤️ #ChronicIllness #SurgeryRecovery #ExerciseRehabilitation #POTS #CrohnsDisease

First stoma supplies order…feels like a present with a new size bag to try. Do you prefer midi or maxi size bags? #stoma #coloplast #salts #ileostomy #unbox

Why wasn’t my grade V rectal prolapse repaired during surgery? 💗 These are the reasons my surgical team decided not to repair my prolapse during my recent surgery. With my hypermobile EDS (hEDS), there is a concern about the risk of the prolapse recurring because of the connective tissue problems affecting the support around my pelvic organs. Repairing the prolapse also wouldn’t have: 💗 Fixed my faecal incontinence. 💗 Resolved the pelvic floor problems that pelvic floor physiotherapy hadn’t been able to fix. 💗 Addressed my severe constipation and widespread gastrointestinal dysmotility. My bowel problems are much more complex than just the prolapse, and repairing one issue wouldn’t necessarily have resolved the others. Instead, my surgery was focused on managing my symptoms with a stoma, while recognising that the prolapse itself hasn’t been definitively dealt with. Eventually, the plan is for me to have a full proctectomy, removing my rectum, leaving me with what’s affectionately known as a ‘Barbie butt’. 💗 It’s a lot to process, especially at just 30, but understanding why decisions are made is an important part of navigating life with multiple chronic illnesses. Sometimes the treatment you need isn’t a straightforward fix, and sometimes surgery happens in stages. Sharing my experience to raise awareness of rectal prolapse, hEDS and the difficult decisions that come with complex gastrointestinal conditions. 🫶🏻 #RectalProlapse #HypermobileEDS #hEDS #CrohnsDisease #StomaLife

Day 27/105 🩷 Recovery isn’t one-size-fits-all! I’ve started walking on my walking pad at home! 🏃🏼‍♀️ I’ve set it up in front of a table so I have something stable to hold onto because of the dizziness I experience. Safety has to come first, especially with POTS. As a Clinical Exercise Physiologist working in cardiac rehabilitation, I always encourage my patients, when clinically appropriate, to get outside for their daily walk after heart surgery. But right now, my own recovery looks a little different. With the unpredictability of my symptoms, walking at home means I can have supervision, hold on for stability and stop immediately when I need to. I can also break movement into a few minutes at a time throughout the day rather than pushing myself to complete one longer walk. Little and often makes movement feel safer, more manageable and more realistic for me right now. 🩷 Recovery isn’t about comparing yourself to others or forcing yourself to meet someone else’s expectations. It’s about finding what works for YOUR body, adapting when you need to and celebrating the small wins along the way. Progress is progress, even if it looks different to what you imagined. ✨ Sharing my personal experience, not medical advice. Exercise after surgery should be appropriate for your individual circumstances and recovery plan. #105ChronicDiaries #SurgeryRecovery #POTS #Dysautonomia #ChronicIllness

Has anyone tried the JB extensions ones?? Think I’ve converted to a wig girl whilst I try and sort my natural hair out! #wig #hairloss #wighair #hairgrowth

Day 26/105 💗 Yesterday was a dizziness and presyncope kind of day, so instead of pushing through my exercises, I focused on filming an educational video about why lying on the floor with your feet elevated can help manage POTS symptoms. Recovery isn’t linear, and sometimes showing up for yourself means adapting your plans and listening to your body. 🫶🏼 Disclaimer: This isn’t medical advice, just an educational visual to help explain what happens in the body. I know the human body is far more complex than a water bottle, but it’s a simple way to visualise how gravity and blood pooling can affect circulation. #POTS #POTSAwareness #Dysautonomia #ChronicIllness #105DaysOfRecovery

We talk a lot about the bad experiences people have in hospital, but we don’t talk enough about the amazing staff who genuinely make a difference. 🥹🤍 I had some incredible staff looking after me during my admission and surgery, and I’ll never forget the kindness, compassion and support they showed me during one of the hardest times of my life. When you’re facing major surgery, navigating multiple chronic illnesses and trying to find your way through recovery, the way you’re treated matters SO much. The little things, the reassurance, the patience, being listened to and feeling safe when your body feels completely out of your control. They might be part of someone’s working day, but they can mean absolutely everything to the person on the receiving end. 🫶🏼 Healthcare staff work under so much pressure, and I know the NHS has its challenges, but I think it’s just as important to publicly recognise the people who go above and beyond as it is to speak up when things go wrong. To the staff who looked after me during my admission and surgery, thank you. You made a really difficult experience that little bit easier, and I hope you know how much that meant to me. 🤍 Let’s talk about the good experiences, too. Because the people behind the care deserve to be recognised. Have you ever had a healthcare professional who made a difficult time a little easier? Tell me about them below. 🥹👇🏼 #NHS #NHSStaff #HealthcareHeroes #PatientExperience #ChronicIllness

I was so unwell when this episode with nath of @Beyond Barriers Sick-fluencer that I never shared about it. But talking about my diagnosis of OCD and how this lead to burnout physically and mentally (on more than one occasion) #ocd #burnout #healthscare #podcast