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Invisible Illness - Crohn's Disease!

Updated: Apr 17

My own story about Crohn's Disease! 💜

*Readers are warned that the content described in this story contains medical information and may be upsetting to some people. Please read with caution. The content has been supplied by a person living with Pernicious Anemia. We advise discretion and highly recommend you do not self-diagnose and seek advice from a medical professional.






Living with an invisible illness can be a challenging journey, as those who face these conditions often grapple with not only the physical symptoms but also the unseen struggles that come with it. Invisible illnesses are medical conditions that don't necessarily manifest obvious outward signs, making it challenging for others to understand the depth of the challenges those affected face. In this article, we'll explore the world of invisible illnesses, shed light on the experiences of those living with them, and discuss the importance of empathy and support.


Understanding the Unseen


Invisible illnesses encompass a broad range of conditions, including autoimmune disorders, chronic pain syndromes, and mental health disorders. What sets these conditions apart is the absence of visible indicators, making it difficult for others to comprehend the daily battles that individuals face. Conditions like fibromyalgia, lupus, and depression fall into this category, and their impact on one's life can be profound.


The Struggle Beyond Symptoms


One of the most significant challenges for those with invisible illnesses is the constant need to explain their condition to others. Since there are no external signs, individuals may find it hard to convey the extent of their pain, fatigue, or emotional distress. This can lead to feelings of isolation and frustration, as friends, family, and even healthcare providers may struggle to fully grasp the complexity of their experiences.


The Importance of Empathy


Empathy is crucial in bridging the gap between those with invisible illnesses and those around them. It involves actively listening, seeking to understand, and validating the experiences of those facing these conditions. Recognizing that someone may be battling an invisible illness is the first step in fostering empathy. It's about acknowledging the validity of their struggles, even when there are no visible cues.


Breaking the Stigma


Dispelling misconceptions surrounding invisible illnesses is essential for building a more compassionate society. The notion that "if you can't see it, it must not be real" perpetuates stigma and hinders understanding. Education and open conversations about invisible illnesses contribute to a more inclusive environment where individuals feel supported rather than judged.


Building a Supportive Community


Creating a supportive community is vital for individuals living with invisible illnesses. This involves not only understanding their challenges but actively offering support. Simple acts of kindness, such as being patient, offering a listening ear, or educating oneself about their condition, can make a significant difference. Empowering those with invisible illnesses to share their stories can also contribute to a more compassionate and informed community.


My Story -


I was diagnosed with Crohn's disease two months after my symptoms first start. I was dismissed from the Gold Coast hospital on numerous occasions being advised it was just period pain. A visit to a private specialist to see what was wrong. He couldn't lightly touch my abdomen without me flinching. This was after weeks of tests and drs visits. He wheeled me over to the hospital and demanded I be seen straight away. A day later I was told I had Crohn's disease. Given steroids and when I was 27 and underwent my first, major bowel resection a few months later. I was given a temporary ileostomy, this meant my stools emptied into a bag on the side of my tummy. I continued to carry on like most 27-year-olds. I was partying, eating what I liked, and neglecting myself. I was oblivious to my condition and the importance of looking after myself. My ileostomy was reversed a few months later with a wound infection complication which took a lot of time to heal. This was a confronting time for me as, after some time, it was up to me to look after my wound. Due to wound complications, I underwent a massive abdominal repair surgery a year later. I once again faced a wound infection. During this time I still carried on neglecting myself. I tried to go back to work but the areas that I had the most skills in were not prepared to take on someone like me. So I focused my attention on starting my own business - 4 Eyes Optical! Fast forward to 2015, my symptoms started to flare up. I developed fistulizing Crohn's and underwent multiple surgeries, tests, etc. My condition has been closely monitored since then with bi-annual endoscopies and or colonoscopies. I have had multiple admissions to the hospital due to strictures which is when the bowel thickens or tightens due to the prevalence of the disease, inflammation, or surgery. I had two problematic strictures. They were stretched open using a ballooning technique done during my scope tests.


In 2018 I pulled myself out of 5 years of depression! I turned my lifestyle around and started looking after myself for the better! My strictures behaved themselves from 2018 to 2020. A disgusting DV attack in 2020 and the sudden death of my Mum in 2021 saw my mental health go down a little. The stress was enormous and my symptoms came back and were worse than ever.






In September 2022, I made a deal with my Drs to restart a maintenance medication once I had my stricture removed. At first, it was only meant to be the removal of one, but I had two removed. The bowel leaked twice and now I am hosting another ileostomy which they intended to reverse. I have just found out that I have been battling Q-Fever for the past few months which affects immunosuppressed people like myself. It can mimic autoimmune diseases like Crohn's. Thankful to be getting on top of this virus also. 💜💪🏼





November 2023, It was discovered that I had diversion colitis, the outcome of a lack of flow through my large bowel and colon. My large bowel was suffering from a lack of nutrition. I saw my surgeon and my reversal was set for January 2024. I was overly disappointed as my loop ileostomy gave me the freedom to venture out without having to find a loo, and most importantly, it gave me the freedom to travel long distances without a driver due to the onset of pain in my tummy.


January 2024, After being sick for so long with Q-fever and diversion colitis and not reaching my goal of being able to prove that ostomates can do anything, I decided to do a little TKD training the night before surgery. I was unfit and out of practice, however, I think I proved we can hit as hard as anyone else.


On surgery day, all went well. I remember heading to the theatre and being awake while they inserted an arterial line into the artery in my wrist. It monitors what the heart is doing and gives accurate split-second information if anything goes wrong. It had to be done twice as the trainee antithesis did the first wrong. It was very uncomfortable and awkward. I was happy when it was over. A cannula was inserted, and then I was wheeled into the operating theatre, where I moved to the operating table. An oxygen mask was put on. I was given some anesthetic and asked to count to ten. The next thing I remember waking up in my room. I got up had a shower and felt one hundred times better.







Days 5 and 7 were a little worrying as my medical team thought I had another bowel leak, so they rushed me in for a CT scan and fortunately, my bowel was still in one piece.



My bowels were pretty upset initially. I was on the loo up to 27 times a day for the first 10 days. Once I worked up the courage to tell my medical team that I needed certain medication at certain times etc things improved. My wound looked great at this stage.


I was eating and drinking fine, up walking as much as possible but struggling with my low pressure from time to time, along with my frequent toileting and an issue with my wound starting made my stay in the hospital a long one.








The frequent toileting started a new and very painful throb in my colon. It took a few weeks for this to die down. I received salofalk enemas at this stage which didn't seem to do anything. A sigmoid scope gave me the all-clear for any issue in my large bowel.


I have just passed the 3-month mark since surgery and I have started moving more, my wound has almost healed for the second time after getting blisters and most importantly, my toileting has improved. I am back to having anxiety about needing to know where a toilet is at all times I am out. However, I am as healthy as possible and have so many great things happening, I really can't complain.




I miss my pouch and the freedom it gave me. If you know someone that has one understand that it is not always their choice to have one. But it can make all the difference to their health and quality of life. Be kind and seek to understand, not judge.


Conclusion


Living with an invisible illness presents unique challenges that extend beyond the physical symptoms. Fostering empathy, breaking down stigma, and building supportive communities are essential steps toward creating a more inclusive and understanding society. By embracing the unseen, we can work together to create a world where individuals with invisible illnesses feel heard, supported, and valued.


Love and Light! Leah xo 💜

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