Ulcerative Colitis

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    Jane L Edwards

    Lessons Learned in 10 Years of Living With Chronic Illness

    Ten long years. 10 years of hoping I will improve. 10 years of taking serious medications with serious side effects. 10 years and somehow, I don’t feel I have progressed physically. I haven’t gotten “better,” but I am better at managing my condition and my life. It all started with a toothache and a tiredness that sleep could not cure. The removal of all my wisdom teeth, three rounds of antibiotics, and numerous visits to the dentist later, and I heard the words that I will never forget: “Something is wrong, and you need to urgently see your doctor.” Thanks to my fab dentist (who I’m still with now), that is what I did. But getting a correct diagnosis is not always as simple as seeing your doctor for some tests. And so, several weeks of visiting my GP and having blood tests led to an emergency stay for two weeks in the hospital. Then countless doctors and endless tests later, and I received a diagnosis: microscopic polyangiitis, also known as Wegener’s vasculitis. It wasn’t the outcome I had expected, but what was happening to me was still not clear. When one doctor questioned my symptoms and another doctor proved me right, I learned valuable lessons. Ultimately, you must look out for yourself and find experts you can trust. I have learned a lot in 10 years, and maybe I have progressed more than I think. I have a team that I trust, I have some stability with my health, and I have family and friends who understand that sometimes, my illness is too much for me, and I need to hide away. But overall, I have a new life — one that wasn’t planned and one that is restricted in some ways. However, it is a life filled with love and respect. The new version of my life is quite lovely, so I think I will keep it — medications and all. It’s called “chronic illness” for a reason. After my diagnosis, I thought I could battle through. I thought I would win. I thought I was invincible. Unfortunately, I couldn’t win, and I was so far from invincible. 10 years on, I am still battling and visiting hospitals monthly, but I am also still hopeful. I did not understand the words “chronic illness.” When a colleague asked me how I was managing, and I said my illness was still dragging on, his response floored me. He simply said, “Well, it is chronic.” It was such a straightforward comment, but it really hit home. Did I think my illness would just go away? Had I not believed that it would stay with me for the rest of my life? Had I just ignored reality? Am I still ignoring it? I try to forget that I have a severe illness. I try to “prove it wrong,” almost as though if I keep going, somebody will soon tell me it was all a joke and that I am OK. The COVID-19 pandemic changed my life. The last few years have been tough for us all. The COVID-19 pandemic changed many things. For me, it felt like a strange clinical trial — I got to remove all the travel and interactions with people and see what happens to an immunosuppressed person with an autoimmune disease. The lack of infections allowed me to drop my medication dose. It also allowed me to work alongside colleagues as equals and not as the only one who was not physically in the room. The pandemic meant I had the energy to be with my family. The world became as restricted as I have been, and it leveled the playing field. Not anymore, though. As the world becomes “normal” again, I become “abnormal” again, and the pressure to join in returns. I have had a number of common infections, and so my medication dose went back up. The large “clinical trial” that has been my life during COVID-19 has given me resounding answers to some of my problems. But solving these problems is not financially straightforward in the real world. Thank you for all the support. The past 10 years have been tough — full of knockouts and disappointment. But they have also been full of laughter, love, and special people. My family has been amazing. Even if we do lots of shouting some days, when it matters, we are a tight unit, and we deal with everything together. My family members are my strength, and I wish I could repay all the support, love, and kindness they have shown me. To the friends who came to the hospital with me or looked after the girls for me when they were little, thank you. To those who have listened to me cry even if it did not make much sense, thank you. My online friends deserve a “thank you” too. Since writing the book, the support from Instagram, Facebook and Twitter has been critical. Online friends, you may understand me. You are often awake at the same time as I am when I cannot sleep, and you may also know how scary and uncertain this disease can be. Thank you. To my boss and colleagues, thank you for all the encouragement and support, positive words, and understanding when I just couldn’t be in the room. You have been the most fantastic company for the last 10 years. George, the black Labrador and Burt, the cocker spaniel have helped me too. George and Burt, you will never know how much you have kept me moving. The movement has helped me avoid diabetes, brittle bones, weight struggles, and depression. Our walks help me both physically and mentally. This is what the future holds. Unfortunately, the medication that has given me some stability has now caused the doctors to think it has brought on ulcerative colitis, another autoimmune disease. This disease affects my bowel and brings more inflammation, more new investigations, more new medications, and yet another thing to learn to live with every day. But I will manage. The past 10 years of medications have caused osteoporosis in my back and hip, medication dependency, and weight changes. The fatigue is constant, and when I get to the end of a working day, I am lucky if I can speak to my family. I keep going, though. I am proud of how my family and I have all dealt with this life-changing diagnosis. I am proud of our resilience and ability to fight. I am also proud of how my children view this world with kindness, and I know that they will make a real difference as they turn into extraordinary young ladies. Vasculitis forced me to step back, look at my world, and focus my energy on the things that really matter. For now, I celebrate being alive, and I thank everyone who has helped me stay that way. It was not so long ago that a diagnosis of vasculitis was an immediate death sentence. I am grateful for the clinical advances and the care I have been given. Now can someone please invent a cure?

    What Helps a Woman in Her Sixties With Colitis

    With our ongoing “What Helps Me” series, The Mighty is leaning into what sets us apart from other health sites: We aim to provide real health advice from real people who live it. In this spirit, we asked our community for the best insights and tips they’ve developed for managing their conditions. As always, they responded with their unique health stories and we are happy to pass along their well-tested resources to you. Responses have been lightly edited for clarity. Today, we meet Mighty member Peggy. She is 60 years old and lives with colitis. Peggy, what helps you? THE MIGHTY: What helps you most when your condition affects your physical health? PEGGY: I stay home and make sure that I am near the bathroom, drink something with electrolytes, wear loose clothing, and take naps when I’m able to. I also use caution when I’m eating so I do not eat too much fiber. What helps you most when your condition affects your mental health? Researching my illness, checking out The Mighty, and talking with my husband helps me most. I love that my husband does not try to “fix” me; he just listens. How do you cope when your normal self-care isn’t working? I just keep on putting one foot in front of the other. I also remind myself that my pain and the related symptoms will eventually pass. Thank you to Peggy for her contributions to our community. Did you find this helpful? Add your gratitude in the comments. If you want to tell us what helps you, you can complete our survey here .

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    One thing.

    <p>One thing.</p>
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    Scans on scans on scans.

    <p>Scans on scans on scans.</p>
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    Grieving and Missing My Old Body After an Ulcerative Colitis Ostomy

    by Hattie Gladwell I wished my ileostomy bag wasn’t real yesterday. I wished it wasn’t there. I wished it would go away. I knocked it while pulling down my shirt and just broke down. I’m not sure if I was overtired or embarrassed by the current situation. I’d blocked the toilet with baby wipes after cleaning up (apparently you’re not supposed to flush baby wipes) and my boyfriend was annoyed about it. He told me I shouldn’t be flushing baby wipes down the toilet, while I frantically got worked up and tried to explain that baby wipes were the only thing I could use! It was really early, like 3 a.m., and I hid under my duvet in bits while he sorted the bathroom out. I felt so bad, but he’d taken control of the situation and I felt too embarrassed to stay in a room with him! I felt really upset. I thought I’d annoyed him and I felt like it was all my ileostomy’s fault. Writing it now, the situation sounds so silly but last night it really got to me. I felt ashamed of myself, that I couldn’t even do a simple thing like using the toilet without causing a scene. Hiding in the darkness beneath the covers with my hands over my ears, I just sobbed and sobbed. I just wanted to feel my tummy the way it used to be. I cried harder as my hand moved down my stomach and as the bag rustled against my palm. I imagined my body a year ago. My stomach was neat and scar-free… bag-free. And I just missed it. I missed seeing the whole of my tummy in the mirror. I missed not hearing any rustling as I moved about in bed. I missed being able to shower without being cautious and I missed not having these baby wipe situations. Last night just bought back my whole experience in the hospital. The constant screaming for the nurses, being so high on pain relief I couldn’t even speak properly. Crying out in pain and being told I was a couple of hours from dying. I just couldn’t get it out of my head. I can’t describe the way these thoughts make me feel. I don’t think I’ve given myself time to deal with that experience. I find it too hard; it’s too emotionally draining going over and over it. But it’s something that creeps up when I’m feeling at my lowest, and I just can’t seem to shake away these memories. And that’s what makes it worse. They’re memories. They were real at one point. It’s not a bad dream that a cuddle can sort out. It’s not a bad thought you can shrug off. It was a reality once upon a time. And for me, it’s somewhat haunting. And I think I’ve come to realize that maybe I’ll never truly love my ostomy. The fact that a touch of my ileostomy or an embarrassing experience can bring back such torment at any one time scares me. I can accept it, and I can deal with it. And I can like it. I can appreciate the fact that it saved my life, and can deal with it visually. I can write about it publicly. I embrace it. But I’m just not sure I can love it, because it’s not something I’d ever have wished for, nor would I wish on anyone else. I feel guilty for feeling so negatively towards my ostomy. I know it saved my life and that without it, I wouldn’t be here. But I also just feel so angry about having IBD, specifically ulcerative colitis. It nearly took so much away from me. My job, my relationship… my life. And I’m allowed to be angry at that, aren’t I? I’m angry at the people that didn’t listen to me and could’ve saved me from surgery a long time ago. I don’t want anyone to feel disheartened by this post. Nor question my motives. I’m merely just having a bad couple of days. And I would never disregard the fact that I think my ostomy is a beautiful, life-saving thing. And I am so grateful that it has given me a second shot at life. And I’ve come to terms with the fact not everybody will accept the change in my body. I’ve accepted my body. And that’s OK. But sometimes, I can’t help but miss my old one. Maybe this is because I never appreciated it beforehand. This whole experience has made me reflect on all the time I spent pointing out the flaws I could see within myself. And now, as I look back on those moments, I regret them. I regret not realizing my body was fine the way it was. I hate the lengths I’d go to feel better about my body. And I guess I hate that I’ll never get a chance to accept my body the way it was… because no matter what I choose to do in the future, it’s never going to be the same. I feel nervous about posting something like this. I don’t want you to think I’m contradicting myself, or being hypocritical, but journaling this experience is my diary, my way of dealing. And it’s important for me to write every ounce of how I’m feeling so that I can reflect on it and move on from it. And this is why I’m writing today, to move on from last night. To accept that I am going to have nights like that. Nobody can be completely happy all the time… can they?

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    Need self-care? Try connecting with your Inner Kitten.

    <p>Need self-care? Try connecting with your Inner Kitten.</p>
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    Loving Running Shaped My Attitude Towards My Multiple Sclerosis

    Early on in high school, I developed a love for running. I was never the fastest, and I didn’t have “right” form, but it was mind-clearing and therapeutic. I ran for half an hour every day in the afternoon. I lived in an old agricultural labor camp in the Monterey Bay area, so I was surrounded by acres and acres of land that I would use as my personal running track — open for me to use whenever I wanted. I would get tired quickly. I would pant and trip but was oblivious because my focus was on the music blaring out of my noise-canceling headphones. The daily grind of going out every afternoon for my run gave me endurance, so by the time my sophomore year of high school began, I was ready for the track days in my physical education class. When we ran the mile the previous year, I usually was second-to-last, finishing with my best friend who happened to be asthmatic. In my freshman year, my mile times were around 12 or 13 minutes, but by sophomore year, I could run a mile in 8:40. I was happy to finish with that vastly improved time. I could not stop — when I finished my four laps, I had to continue to run until we were set to walk back to the school down the street. But there was a new sensation in my body that had started the summer before, and it was starting to dominate. I had weakness, numbness, and utter loss of control of my legs from the waist down. My knees could bend backward at any moment. When this happened, I had to take small steps until I regained some sort of feeling — any sense of control. This fragile state continued throughout my sophomore year of high school. I worried, but I also dismissed these sensations and attributed them to just being tired. At the beginning of my junior year of high school, I developed ​​diplopia — also known as double vision — for a short stint. My double vision got to the point where I would walk forward with my head facing to my right, and I would veer off to one side and bump into walls. This worried my mother, so she took me to the eye doctor, who redirected us to my primary care physician. My primary care doctor expressed concern and urged us to the emergency room, where I was put on an IV to deactivate the inflammation. I ended up in the back of an ambulance on my way to the Lucile Packard Children’s Hospital at Stanford. All of these doctor and hospital visits occurred in the span of a day. I was taken right out of class and after midnight, I was in a hospital bed. I was utterly confused, but like many other students, I was happy to be absent from school. Just as quickly as I was taken in to get diagnosed, though,  my life changed. I went through many tests and exams: MRIs, lumbar punctures, and multiple rounds of blood work. I was told I had multiple sclerosis (MS), which some people refer to as “the invisible disease.” MS is an incurable disease too. I felt fine as I lay in the hospital bed surrounded by doctors looking down at me and expecting some sort of reaction. Did they expect sadness or maybe anger? I had no idea what was in store for me. In the emergency room, I was immediately treated with an IV, but my medication had intense side effects. The day I got home, I felt like a vampire — light and food both made me feel nauseous. I lay on the floor for an entire week feeling sick. Once that wore off, I went back to school — but even though I was the same in many ways, I was different. After my first class, which was AP history, the teacher told me that he wanted to speak to me after class. He basically told me to leave AP history class. Upon moving into my new history class, I was greeted by one of the best friends I ever made — I just did not know it at the time. He waved me over to sit next to him, and he happened to be the cousin of one of my other friends. This new friend was always super supportive, and he didn’t act weird when I told him about my new diagnosis. I only told a handful of people because I did not want anyone to know. Even then, I can look back and appreciate his reaction because not everyone is so kind and understanding — even the adults in the room that I assumed would be understanding. Without realizing it, I let MS overtake my life. I kept myself busy to avoid facing this new opponent of mine head-on. I was in denial. I chose to hang out after school as much as I could. As class secretary, I was at every event trying to help my class fundraise, and I was always busy during homecoming week. It was the most fun I ever had. Although my MS was not active at this time, I had stopped running because I felt a pain in my calf within minutes of starting to run, and I did not want to provoke or trigger a multiple sclerosis flare-up. One day, I came seconds away from passing out on my way to the office to seek help. The darkness closed around me with every step I took, and that 50-foot-long walk was the most intense and daunting of my life. Looking back, these symptoms were present for most of my life. As a child, I went to the doctor a lot, and my medical file was so big that the doctor would joke about it. I went so often that they began telling my mother and I that I should only come in if my symptoms lasted over three days. Coincidentally, that is what an MS flare-up or relapse is. The numbness in my legs when running was due to MS, the diplopia was due to MS, and every other symptom I would dismiss was most likely connected to MS. My initial MRI showed a lot of lesions — way more than someone my age should have. Also, as a young Mexican man, I was not a stereotypical MS patient, but I still had multiple sclerosis. Thanks to the medication I was immediately put on, I was supposed to have fewer future attacks, but the side effects of that first treatment were not pleasant. I would often get pain in my stomach to the point where only the freshness of the floor against my skin brought me comfort. Hours later, I would get sick. I would be afraid and give up time and time again. It got so frequent that I sadly know to properly get sick and would not fight my nausea anymore. One of the last times this happened, I just let the pain do whatever it was going to do to my body and took a nap inches away from where I had gotten sick. I had a day when vertigo took over me too, and I just lay on the ground all day. I even needed my father to help me to the restroom. At times, I feel like I am unstoppable and invincible, but once my MS decides to rear its ugly head, I become submissive and afraid. I have no idea where my multiple sclerosis will go, but now on my third treatment, I have few to no side effects, and I am able to live a good life. My girlfriend is supportive and loving too. I told her about my multiple sclerosis soon after meeting her for the first time because I did not want to catch her off-guard in the future, and she was accepting and kind. She is always willing to help anyone, is super insightful and smart, and makes me feel as if my MS is not a thing. She makes me feel like my MS does not exist, and I love her for that. Thanks to her support and my family’s support too, I continue to pursue my higher education at UC Riverside, majoring in English and hoping to minor in education. I do not let multiple sclerosis dictate my life and put limits on me. As difficult as it may be, I will push myself to run again, willing myself to face any obstacles that come my way instead of cowering from them.

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    Fed up

    I am depressed and physically ill with ulcerative colitis. I have a deep, fundamental rage toward my employer and a high-stress project to work on where most of the team is not pulling their weight. I have had it and I have nowhere to vent my despair and nobody in my life who wants to give me even five minutes to interact, so I am dumping here. I don't even expect a response. I just figure this is a safer place than Facebook.

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    World IBD Day is next week!

    <p>World <a href="https://themighty.com/topic/inflammatory-bowel-disease-ibd/?label=IBD" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce8c00553f33fe9950a3" data-name="IBD" title="IBD" target="_blank">IBD</a> Day is next week!</p>
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