Ulcerative Colitis

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Ulcerative Colitis
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    Community Voices

    Tolerance for a Friday

    <p>Tolerance for a Friday</p>
    Community Voices

    My Life Was Changed by My Ulcerative Colitis Diagnosis

    <p>My Life Was Changed by My <a href="https://themighty.com/topic/ulcerative-colitis/?label=Ulcerative Colitis" class="tm-embed-link  tm-autolink health-map" data-id="5b23cec500553f33fe99edf0" data-name="Ulcerative Colitis" title="Ulcerative Colitis" target="_blank">Ulcerative Colitis</a> Diagnosis</p>
    2 people are talking about this

    Stop Changing Your Food Plans for Me

    When I first got sober in July 2020, I felt incredibly awkward going out to meet friends. Not because I was insecure with my choice at that time, but because they suddenly started acting like their own choice to drink was somehow offending me. They started altering their own plans based on my sobriety, and that made me feel strange. I made a choice to stop drinking; it doesn’t mean others need to do the same. I appreciated the sentiment of wanting me to feel comfortable, but it made things more awkward than anything else.   I feel the same way about food and ulcerative colitis. To all the people hosting a party, gathering, dinner, social hour – whatever – that includes people living with UC … please stop altering your food plans on my behalf. While I appreciate the effort to ensure everyone, including myself, have something to enjoy, I promise I’m OK “eating around” any restrictions.   I’ve spent 20 years of my life having to move around the limitations that UC has afforded me. I’ve adjusted exercise plans, travel plans, eating plans, friendships, relationships, and so many other things due to UC. I’ve had to research alternative places for dinner that have better restrooms. I’ve begged people on flights to switch with me so I can have an aisle. I’ve timed my exit to use the restroom around how much time I have until I really have to go. I’ve packed my own snacks and drinks. I’ve left parties early and arrived late. I’ve altered pretty much every aspect of my life at some point due to UC, and it’s pretty exhausting.   But I’ll tell you this: the last thing I want altered on my behalf are other peoples’ plans. Maybe 10 years ago I’d gladly answer all the questions about what I can eat; not today. Today I feel 100% confident in my skin when it comes to UC, which means I feel 100% comfortable managing my own restrictions without disturbing those around me. Call it the people-pleaser in me, or call it not wanting to draw attention to myself. I choose to call it “acceptance.”   Part of me accepting my UC every single day is taking responsibility for what I need because of UC. Sure, the medical system can afford to accommodate the chronic illness community a bit better. Sure, society in general needs to be better built for autoimmune disorders. And sure … it’s not necessarily fair that I was dealt this card. But for me, I don’t need or want the world to stop spinning because I can’t eat popcorn. I’ve built my life around UC accordingly, and that means confidently accepting invitations without an asterisk on my RSVP. This is what I do to respect myself, my disease, and my own self-esteem. It helps me with acceptance to also accept responsibility for my own needs.   But that’s just my story – if I’m a party guest, I want to be an easy one. How do you navigate your IBD needs around social gatherings?

    10 Things I Identify As That Aren’t UC-Related

    I get it. It’s easy for me to get sucked into the one, big, hairy truth of my life, which is that I live with ulcerative colitis. Outside of my family, it’s the longest thing I’ve ever known, spanning more than 20 years of my life on this Earth. And so much of what I do is due to UC – the speeches I give, the podcasts I go on, the articles I write for The Mighty. I’m so grateful for the opportunities that UC has given me, despite all of its hard parts. I love raising awareness and (hopefully) helping someone else feel less alone. However, sometimes I do need to take a step back and remind myself of all that I am that isn’t related to UC. I need to remember the things that I do and believe it and identify with that have nothing to do with my gut. Does UC maybe sometimes insert itself into those identities? Of course, but I’d have them regardless if it did or not. So let’s make this fun. Take out a piece of paper, and write down numbers one through 10 on one side. Then continue reading and make your own list along the way of 10 things that you are proud to be that aren’t IBD-related. Ready … set … go! I am a runner. I’ve always been a runner. Despite recent body changes, I still run/walk at least once a week. I’ve completed the Boston Marathon. I’ve run more than 20 half marathons. I have a 5:19 mile PR on the track from high school. I ran in the cross-country state meet as a sophomore. I am a runner. I am a mother. I gave birth to my son in March 2022, and being a mom has been the greatest joy and greatest challenge of my life. I’ve learned so much about myself in the last five months. To all the moms and mother figures out there, you’re doing an absolutely great job. I am a writer. I write about UC, yes, but I also write other marketing-related things for a wellness company. I write poetry on occasion. I journal. I edit. I proofread. I just read. I studied writing in college. I love to write. I am an empath. I feel deeply, and I feel your emotions deeply too. This is a lifelong journey for me to hold and honor boundaries while also respecting the superpower that is being an empath. I am a partner. My husband asked me about my UC on our first date, and by the second one he had researched all about it. But that’s not why I married him. I married him because of the 99 other ways he shows up for himself and for me. I am a sister and daughter. Family is everything to me, even when it’s hard. I’d do anything for my family. I’m a huge Peanuts comic strip fan. I grew up reading the original books that my mom gave me from her childhood. I went to the grand opening of the museum in Santa Rosa, CA, after Charles Schulz died. I have a signed piece of artwork of the Great Pumpkin from the original illustrator of the movies. Next to UC, this is probably the longest relationship I’ve ever had. I am a hiker. Since having my son, we’ve established Saturday mornings as my morning to just go do whatever I want by myself, and that usually means doing my favorite hike in the foothills. It’s my time to decompress … and ironically, treat the world as my bathroom if I need to. Kidding … sort of. I’m a big Chris Stapleton fan. One of my main missions in life is to get really good tickets to his overpriced concerts and also have good bathroom access. One can dream, right? I’m an enneagram 2. I study the enneagram to understand myself, my husband, my relationship with those around me, and people in general. I identify very much with this number and all of his lines and wings and intricacies. I was born an empath, a 2, a HSP, and all those things – and I believe that my UC is a tool to help me keep my boundaries in check because of those superpowers. So tell me … what’s on your list?

    Why Talk Therapy Matters with UC

    I remember my palms were sweating uncontrollably as I sat down on the couch, a camera and bright lights in front of me. I had signed up to record a “coaching session” with a renowned spiritual coach that was looking to build her YouTube library. It was basically the only time I’d get this opportunity without having to wait months to be heard. I was flaring at the time and feeling pretty emotionally run down from planning my wedding. I could tell she wasn’t in her prime either; I even overheard her telling her manager to never not schedule a lunch break in between sessions. Regardless, her worst is still better than most other therapists. So we started talking, and I started rambling on about how wedding planning was stressful, boundaries with my family were really hard, and all the other usual drama that comes with family. Then she asked me a question: “When do you feel like this lack of control started?” My flare was top of mind – my eyes kept darting over to the bathroom – and I replied, “2001, when I first got sick with my ulcerative colitis.” And that was it. The session immediately shifted to talking about my experience with UC. Because that was the real root of the reason I was feeling what I was feeling. It was the root of why I feel and felt so many things in my life, both as a teenager and as an adult. But there was one statement that I hold onto to this day from that session, and I’ll paraphrase it here. You’re so focused on having control of all the things in your life that your body literally gave you a flare of a disease that’s all about losing control of your body. It’s screaming to be listened to. Ever since that moment, I poured all my efforts into getting back into a regular talk therapy routine. I had taken my medications, done the exercise, done the research, ate the good things, made the network; what I hadn’t done was work on how this autoimmune disorder completely ruined my mental wellbeing. And it makes sense, too – we spend so much time focusing on external factors for literally everything. Then our bodies flare up with an internal condition and we still focus on just external factors. But what if being really sick is a signal that our brain needs some medicine, too? What if our bodies losing control of our bowels is a sign that we’re trying too hard to control other areas of our lives? What if talk therapy is the medicine we need to simmer the stress around living with a chronic condition in the first place? It is for me, and here are three reasons why: I have a place to say the scary things that I tell only myself at night. I get them up and out over and over and over. That’s less toxic energy going into my gut. I have a place to lose control in other ways so that my bowels don’t do it for me. I have a place to practice feeling really, really good about myself – taking back all that UC has taken from me since I was 14 years old. Do you incorporate talk therapy into your treatment plan?

    10 Sneaky Ways to Manage UC During a Social Gathering

    We’ve all been there. You’re at a party, the vibe is good, drinks and food are flowing, and suddenly it hits you: you gotta go. Like, really gotta go. But there’s a line, or the bathroom downstairs is right next to the social gathering, or the toilet paper is out, or the floors echo, or there isn’t a candle.   Believe me, I have been in all of these scenarios, and they can feel really awkward in that moment. But before we go any further, here’s one thing I’ve been told by countless friends who know I live with ulcerative colitis (UC) and host a lot of parties: Literally no one cares if you have to poop in their bathroom.   Still, it helps to have some strategic methods of getting in and out undetected. Here are some of my top party tricks:   Go before you go. I’d rather be late to the party than arrive and immediately have to rush to the bathroom. I know, I know – this is definitely easier said than done. But if you’re able to “plan” it at all, definitely flush before you rush. Scope out the bathrooms early. It doesn’t matter where I’m going; whether a house, restaurant, or something in between, I always locate the bathrooms when I first arrive. A quick mental note, if you will. Know what foods are off-limits. I love cheese, but I also know it will make me have to poop pretty quickly after. If I’m at a party where I know I won’t love leaving the table, I skip the cheese. Have a planned “out statement.” We’ve all been caught up in those conversations with someone who doesn’t give anyone a chance to speak. Those are literally my worst nightmare, because then the nerves of not being able to step away make the bathroom situation worse. Instead, have a planned statement. Mine is: I really want to continue this conversation, but I really need to use the bathroom. I’ll be right back. Sit by the opening. You’ll never catch me in the middle of a group. I’ll always hang out on the ends to be able to jump up at any time. Don’t be afraid to go upstairs. If it makes you feel more comfortable, blame the line. Ask the host if you can use the upstairs bathroom because the line is long, and you need to go. Make light of it. I’m really open about my UC, so I’ve definitely been the person who jokingly says, “Dang, I shouldn’t have eaten all that cheese!” LOL. Set an exit time. If you know staying past a certain amount of time or hour is bad for anxiety or bowel movements, pick a time to leave and stick to it. Step outside. I’ve stepped outside so many times to pass gas, or even to just get a breather from the social anxiety that can make everything else worse. No window? No problem. Light the candle, spray the poo-pourri, spritz the room freshener, take an extra two minutes to wash your hands with plenty of soap.   Again, everyone poops, and truly no one is going to mind (or even notice) if you have to take the kids to the pool during a party. And if they do, they aren’t really friends worth having, right?

    Community Voices

    Healing with Music, Art, and Writing

    <p>Healing with Music, Art, and Writing</p>
    Community Voices
    Community Voices

    I’m new here!

    Hi, my name is Maddy. I'm here because
    I am really struggling to understand how I can be normal when having Ulcerative Colitis flares all the time. I am on infliximab which has caused me drug induced lupus and have recently been diagnosed with POTS. When I was younger, I had all these dreams to participate in the sports I love (Netball), go to school, see friends and be able to drive a car and live independently. I’m really lost right now with how I can follow all my dreams when I can barely do the basics.
    #MightyTogether #Anxiety #Depression #ulcerativecolitis #pots #lupus #infusions #medications #life #help

    3 people are talking about this

    Yes, I Grieve My Life With Ulcerative Colitis and Here’s Why

    Grief is often associated with a loss of a loved one. Or maybe when you think of grief, the horrible news cycle comes to mind. It’s hard to ignore all the upsetting things happening around our world right now, and much of it does call for a grieving period for many people. After all, the very definition of the word grief is “ deep sorrow, especially that caused by someone’s death.” I don’t know about you, but I don’t know a single person that isn’t experiencing some form of sorrow these days. So why is it, when it comes to grieving life with a chronic condition like inflammatory bowel disease (IBD), we don’t really talk about it? Why does it constantly take my therapist reminding me that I need to grieve XYZ for me to actually remember to honor that emotion? Is it taboo? Does it feel too ‘dramatic’ to grieve something like a sickness? Some may argue yes; I know I used to. I didn’t know my ulcerative colitis (UC) was worthy of a grief period … er, an ongoing cycle of grief. In fact, I didn’t even consider it until a few years ago, when an encounter with a very wise life coach told me I was “spiritually bypassing” some emotions around my UC that needed to be addressed. Um, what? In short, I was ignoring the fact that “losing” my body to UC was something worth grieving. Not only was it worth grieving, but it was also necessary to grieve it. I was caught up in a lot of sadness and some anger, and in order for me to pass through it, I needed to grieve what I had lost and continued to lose over and over with each flare. Loss of bodily control, loss of freedom, loss of a worry-free life, loss of so many things. Once I let that sink in and allowed myself to slowly (very slowly!) grieve my pre-UC self, my emotional health started to … improve. I began to move more toward acceptance on a more frequent basis. I didn’t live with UC; I lived despite it. If you’re still scratching your head about how to grieve the hardest aspects of IBD, here are some tips: Recognize that there is a loss there, and that’s OK. Remember that it’s not ‘dramatic’ to feel any feeling that comes up. Work with a therapist to help process the emotional side of things. Write a letter to your self that was before IBD. Write a letter to your self that was after your diagnosis. Be patient with the process. For me, grief is ongoing and an everyday thing. Be gentle with yourself. Remember the stages are very real: denial, anger, bargaining, depression, acceptance. Feel them all. What would you add to the list?