My wonderful friends hosted a great talk about a tough topic and everyone needs to see this! Thank you to all of our wonderful hosts.
NEW VIDEO: Sex, Intimacy and Relationships with an Ostomy! We hosted a very special 11 Health Gutsy Gathering virtual meeting with guest speakers Neilanjan Nandi, MD, Lora Yeater- founder of the Simply Beautiful and Dana Garber RN. Join us as we take a deep dive into this extremely personal and important topic!
This goes out to all of you who are still terrified of interacting with humanity. You are not alone, and you’re not being paranoid; you are keeping yourself safe. As more people are resuming their normal lives, social media is a constant painful reminder that I need to be extremely careful and remain in lockdown due to my immune issues. Last time I did something social was a wonderful party on Valentine’s Day and now it’s September. So much has happened during that time that has definitely led to a decline in my mental state.
I try to put on a good face for people and lift them up during these chaotic months, but that gets extremely exhausting very quickly. I can only hope people will forgive me for forgetting to send them a letter or respond to a text in a timely manner. If all else fails I can share an online dating story and we can have a laugh. I’m stuck at home, so most people just ghost when they find out, but I’ve had a few FaceTime chats. I try to make a good impression by doing things like brushing my hair and putting a bra on. Sometimes even a little makeup! We are living in crazy times.
The reality is that I am not coping well. I am not taking care of myself like I should and I don’t know why I do things like skip vitamins, stay in my food comfort zone, and go into couch potato mode instead of working out. I don’t even do my breathing and mindfulness exercises as much as I should. I’m getting increasingly restless, and I think it’s affecting my physical health. I didn’t need a global pandemic in the midst of a Crohn’s flare. I have had seven hospital stays in 2020 so far and the fear of going back is strong.
I have PTSD as a result of some medical experiences, so during the pandemic I have two fears: getting COVID, and just anything that will put me in the hospital. My bag stays mostly packed. Being in the hospital alone is hard, and it’s something I’ve already endured so much. I don’t typically have visitors except my parents when the hospital is less dangerous. I’m seeing some great mental health professionals, but it isn’t like they are going to be able to magically help me in one session. When I am putting effort into taking care of myself, it’s so difficult to focus. Meditation is not going well, but I know if I keep at it things will get better.
I don’t know if I can be much help, but I’ve learned a lot during this pandemic. I’m two types of immunocompromised and I live with my parents, so they are also being ultra cautious for my sake. Sadness and restlessness set in pretty quickly at the beginning of all this. We were in the same boat as everyone else for a bit, but now we’re not on the same page about the risks of the pandemic. Missing family events hurts. It hurts because my family is important to me. It hurts seeing them have a great time while I sit at home wishing I was there.
Those of us who are still entirely or partly under lockdown are likely feeling frustrated and bitter toward people who can confidently go about their lives. We’re also probably scared because we have higher risk factors for complications than the average person.
I see a therapist and a psychiatrist, but here are some other aspects of taking care of my mental health.
One of the most helpful coping mechanisms for me is laughter, so I call or FaceTime people when I need a boost. There used to be plans for a big group of ostomy friends to get together over the summer or early fall, but then everything went bad. And I won’t see them next year either. Long distance friendship is a challenge. But I’m deeply grateful to have people to call when I’m down or when I have the energy to be social.
Taking some time each day to do something creative helps a lot. I have been sending watercolor cards to friends, practicing brush lettering, and conquering an intricate paint by number.
Seeing a functional medicine nutritionist because she has helped me reduce my pain, which really worsens my mental health.
Breathing exercises and meditation can help with anxiety. If you get annoyed with the first one you find on the internet, don’t lose hope. There’s probably something that will suit you better. I find this practice to help with low level issues but not with full meltdown mode.
Journaling is great for keeping track of what’s going on with you, but you can also use it for self care sometimes. If you look up “positive journal prompts” you’ll find a lot of them. I mix the two in the same journal but you could even use two different journals.
Limiting exposure to social media might be a good call. Comparing yourself to others can have real consequences, and there’s not much chance it’ll actually improve your mood right now.
I don’t claim to have all the answers; these are just things I’ve picked up that I hope you will find useful too. My family has been so patient and caring with my breakdowns, and for that I’ll be forever grateful. I’d especially like to give a shoutout to my mom, who is with me every step of my mental and physical struggles.
If you’re struggling with loneliness, anger, and grief, you are not alone.
We all get overwhelmed sometimes. During this pandemic, I haven’t seen friends yet so I’ve had to lean on these things to help get me through. I hope you can find something helpful!
Mindless television/movies. Comedy is great for some stress relief. I often choose comedies because I feel like I already have too much adrenaline in my body and I don’t need any more. Revisiting old favorites also works because you know everything that happens.
Write letters. This isn’t everyone’s thing, but I send a lot of these. I find it relaxing, and in order to write a letter you have to be fully present in that moment so anxiety has to take a backseat. Besides, everyone loves getting snail mail.
Participate in online communities. Especially right now, you may be able to access virtual support groups from around the country. It helps a lot to talk to people who understand my struggles.
Ask your friends for music, book, or movie recommendations. Sometimes they might know of something that will become your new favorite.
Read books you find relaxing. My whole family read the whole Twilight series because the reading difficulty was so low. That’s the kind of book you’re looking for.
Sometimes I wish my brain had an “off” switch. I get caught up in cycles of anxiety and frustration that worsen my physical symptoms. Distractions can help redirect my thoughts and allow me to step back from my crises. These five things require minimum involvement with others and no physical activity! I hope you’ll pick one and give it a try. Stay safe out there, people. I know social distancing is rough.
I am writing through tears because I need this man to be remembered. Not just for his business, but for his heart.
Time and again, I’d find his kind words helpful to me along my difficult journey with Crohn’s disease. He was always there to boost me up and follow through with his talk of treating members of the company as family. I believe he truly meant that.
Both of us bonded over our shared list of projects we wanted to take on and our passion for the ostomy community. Michael was an unforgettable man, and he could be a bit of a shock. How can someone who suffers so much and honestly needs some rest be so enthusiastic for every moment in life? How can he be so contagiously joyful? How can he be such an outrageously persistent visionary? How can he be such a brilliant source of light for those around him? I’ll never understand. I’ll never forget either.
I told Michael frequently how happy I was at his company and whatever happens, I know I will have been a part of something important.
I never told him that I believe he saved my life by hiring me. But I can tell people now and try to honor his legacy. I don’t know how to express my profound gratitude. Nothing is enough. Nothing is special or eloquent or heartfelt enough. He simply had so much heart that I felt humbled by him and inspired to be kinder and more enthusiastic with people.
I owe him more than he will ever know. But he set me on a path toward better care for people like us, so thanks to his vision and planning, I have hope I can stay on that path and help achieve some of his goals.
He was enthusiastic about living. He inspires me to try to take a better attitude because I handle life with a lot more frustration and profanity. Thankfully he was no stranger to obscenity so I could freely express myself around him. Because of him, I feel like I have value. I believe I can help patients now. I didn’t believe I could make a real difference before Michael. He believed in me when I needed it so badly. Because of him, I see the world and my possibilities differently. Because of him, there are patients who found comfort and relief. Because of him I will never stop trying to change healthcare. I know he’s touched many lives and I’m proud to have had his friendship.
We got to know each other better at a ostomy conference hotel party. Thankfully a few of us left when the crowd started getting rowdy. A few of us went out to dinner and his business partner had some very smooth pickup lines and Michael kept saying, “Bloody hell.” We shared a lot of laughs and the world is darker without him. Just thinking about my precious little time with him makes me smile.
Cheers to you, my dear friend. Thank you for sharing your life with people who needed you.
I would also like to share a story that makes me laugh every time, with the warning that there’s some crass language.
One of my favorite memories with Michael was when we were playing an improv game that required some volunteers from the audience. He and our youngest Patient Coach at 13 years old were among them. Nathan Seres, Michael’s son got the opportunity to ask the volunteer panel a question and he went with “Why is the sky blue?” I think he was just trying to mess with his dad. So the answer, thanks to Michael, was “Because, you twat.” And then our 13 year old asked what twat meant.
Lessons from Michael:
Don’t let a little health crisis deter you from important work. We both worked more than we probably should have during bouts of severe health issues and hospital stays. When doctors and nurses would ask about it, I would tell them how Iucky I am to have such a fulfilling job that I love so much.
Express appreciation for your time with those around you. He made everyone feel special, and he was quick with compliments for a job well done or well wishes. Because of him, I will treasure time with people a bit more, and I’ll make more effort to express that.
Don’t let anyone tell you something is impossible. I don’t know much about the massive amount of effort that went into developing a new company and starting to change healthcare. I’m sure people have doubted along the way, but Michael fought so hard and so persistently that he created an amazing, unique company.
Adaptability and creativity are vital. Life threw him so many obstacles. He managed to adapt, carry on, and inspire people no matter what.
Put others first. He was not the best at self care because he was so passionate about making life better for other patients. He put the needs of the ostomy community over his own so constantly, and even when he was down he continued to encourage all of us who were blessed enough to work with him.
Online dating is already a nightmare parade where decency goes to die, but it’s even more frustrating and potentially humiliating if you have a medical device or a chronic illness. It’s still worthwhile because there are some wonderful people using apps to find companionship, but online dating is wild. Everyone is already working against expectations about appearance and the culture of treating people as disposable, and chronic illness throws more chaos and angst in to the mix.
I’d like to share a bit about my experiences, so hopefully it’ll be useful to someone. I hope you’re able to feel less alone if you are also having mixed luck with dating. I get asked about my dating life often, so I’ll address a few of the most common questions first.
How do you tell someone about your ostomy/ health condition?
Does your health seem to matter?
Why are you still single?
For the love of all that is holy, why?
How do you tell someone? When you tell someone new about your ostomy, I have found it helpful to frame it in a positive context which allows the person to feel comfortable asking questions. Talking about what you’re excited to do with your second chance at life can be a fun discussion, and humor helps too. I also like bringing up the fun things I get to do with ostomy friends. You will not always get positive responses when you tell people about your ostomy, but that’s okay. It just means you need to move on to better people. I’m so glad I started making better choices and stopped accepting being treated differently because of my health issues. I’ve gotten some very sweet responses about how dates see me as brave and strong, which relieves a great deal of anxiety for me.
Does your ostomy seem to matter?
In my experience my ostomy absolutely seems to matter to some people. Rejection out of ignorance is a risk I choose to take with every new person, romantic or otherwise. It doesn’t matter much to most people, at least that’s what they tell me. Just because you might get a few bad reactions doesn’t mean you should stop putting yourself out there. There are so many lovely, kind people to balance out anybody who reacts negatively to your physical condition. I’ve been asked about my reproductive abilities on a first date, but I’ve also been serenaded, so there’s quite a spectrum.
Why are you single?
Right now I’m single because I have a bad combination of low tolerance for bullshit, a certain intelligence level, a weird face, and a whole lot of trouble with medical issues. I’m currently unable to see my friends, so dating is on the back burner. It just can’t be first priority when I’m exhausted, ill, and trying to fight for adequate medical treatment.
For the love of all that is holy, why?
I put myself through the ridiculous ordeal that is online dating because I enjoy companionship so much and there are some genuinely amazing people who are using apps for the same reason as me. A bunch of us just aren’t up for trolling bars to meet people and our friends don’t have anybody to set us up with. The time I spent with some of my online dates was sweet and joyful and thrilling, even when it didn’t work out long term.
Obstacles Since my health isn’t great I can’t keep up with healthy people, which I think causes tension in a lot of relationships. I get angry at myself when I have to cancel plans, and I worry about resentment building up over time the more I have to stay home and just take care of myself. I believe honest communication can fix a lot of problems so I encourage people with chronic illnesses to admit when they’re struggling. Instead of quietly trying to push through the pain all the time, try communicating and being straightforward. Pain can be misinterpreted as anger or other negative emotions.
Sometimes loneliness gets the better of me and I make poor choices. I’m getting better over time as I learn from my mistakes, but loneliness is hard. It can be tempting to settle with someone who isn’t good for you just because companionship feels good even if there are issues with the relationship. Loneliness seems to physically hurt sometimes. When that happens, I reach out to my long distance IBD and ostomy friends.
I have such wonderful men in my life who remind me to hold out hope for a decent man who makes me happy. They remind me of what I should expect from a good relationship. Satisfying the need for companionship in other ways helps me stay away from questionable choices. Valuing closeness with friends and family is vital, especially when you face the challenges of chronic illness.
Another challenge I face these days is when to allow people access to my social media. My Instagram feed shows the every side of hospital stays, me in my pajamas with messy hair, and clues about my current struggle. It’s going to reveal my videos from the hospital, the ugliness of illness, and flaunting medical appliances. Allowing access to social media before an in-person meeting is not a great plan in my opinion, but that’s just me. Allowing access to my social media can also be used to jump start great conversations and test someone’s resolve and maturity. When I do choose to share, I only share with a disclaimer that if it’s too much for them, to just let me know and we’ll part ways. Sometimes that happens.
If being open on social media about my adventures with Crohn’s disease hurts my chances with a lot of me, it might not seem worthwhile. For me, though, being authentic and getting to know people who can relate to me are worth more than a romantic relationship partially based on deception. Allowing people access to some very un-sexy photos and hoping for the best is just how it has to be for me sometimes. I love the amazingly sweet reactions I get most of the time. Sometimes they tell me they admire my strength, sometimes they reassure me even if it means making more flexible plans. You never know what will happen.
Moral of this Story
It’s easy to become frustrated with dating in general, let alone the baggage that comes from illness and surgery. Plenty of people in your shoes have wonderful relationships that enrich their lives. The best things in life don’t come easily, but I hope now you feel validated and hopeful. If you have any questions or tips you would like to share, please email me (email@example.com).
Someone once told me I have no business being so picky about dating because I have a chronic illness and I would like to remind all of you how false that statement is. You deserve to be loved, and some people can’t handle being with someone who has physical issues. I hope you’ll remember you are worthy of love and there are wonderful people who truly don’t mind physical flaws or let them get in the way of having a good time.
Everyone deserves to feel beautiful and loved. Ostomy surgery can get in the way of that by damaging our self confidence and scaring some people away. This post is for everyone who feels like their surgery has made them less worthy in some way. Keep being your amazing self and don’t settle for a less than fabulous relationship out of fear of being alone. You can still feel sexy and confident; it may just take some time.
I’ve had people in my life who believe I should settle for anyone who will accept me with my illness. I have an ex who believes I had no business breaking up with him because of my bad health and lack of college degree. I have people I care about who would prefer to see me in any relationship over being discerning about who gets my (limited) time and energy. People have told me they love many things about me but can’t handle my ostomy and Crohn’s disease. And yet, I still hold out hope.
Being expressive about affection for friends and spending time building real personal connections helps with loneliness, and so does being open with your close friends about body confidence and relationship issues. Acceptance of body image takes time and I’m not there yet at all. That said, I’m photogenic sometimes and I am so excited about some pictures from Matthew Hollis (@theobsessiveeye, http://theobsessiveeye.com/) that make me feel sexy and fabulous. Kind words help balance everything out.
I want you all to feel loved and fabulous, so I encourage you to get involved in support groups online or in person so you can meet people who understand what you’re going through and can build you up. My ostomy friends are so encouraging about my body image issues, and I am grateful for all of them.
I’d like to share a few ideas for making hospital stays more pleasant. Let me know if you have any ideas to add!
My brilliant mom comes up with all sorts of goodies to make things less gloomy, and we hope you’ll be able to find some inspiration.
Looking around at the tinsel made my whole atmosphere feel less medical.
My feet get very itchy and cold, so good footwear makes me happy. The slipper/sock hybrid shown here are fuzzy inside and out, and treads on the bottom reduce fall risk. Here’s the link, but keep in mind it’s a seasonal item. Try looking up “fuzzy slippers,” and consider whether or not you want to have your ankles covered. There are plenty of options either way.
A giant gift bag featuring a lovely Christmas scene was a great addition to my little table against the wall. I stored cards and presents above my fireplace.
I’m a little stunned every time a visitor stops by, and displaying their gestures of support helps me refocus my thoughts away from the frustration of my situation. I am blessed by good people in my life.
Any time of year, you can probably find some excuse for creativity.
Decorating a hospital room might sound silly, but it really does help during dark times. It’s a reminder that there is still a reason to smile.
My hospital stays are so challenging and so draining, so taking a moment to be goofy and appreciative of festivity is an active choice.
I always feel better when sparkly stuff is involved, and my parents are so sweet and considerate by bringing me things like this. My mom doesn’t know what a difference she makes.
Being stuck in the hospital recently was especially challenging for me during our big family Christmas party. I was so frustrated and sad that I couldn’t make it, because I genuinely enjoy spending time with this pack of relatives.
Decorating and wearing silly headbands is one of my coping mechanisms for being stuck away from what I love.
The theme for World Ostomy Day this year is “Speaking Out Changes Lives,” and I’m here to tell you that is definitely true. Even though I’m in the hospital and unable to attend any events or celebrate as I intended, I want you to know I’m around to chat and I would love to help you connect with the beautiful ostomy community that has changed my life. I speak out so I can bring some light and empathy to people who share common struggles.
The more I share about my journey with my ostomy, the more I see that I am capable of improving lives. My self doubt erodes a tiny bit every time I know I have inspired or guided someone, even when the rest of my life still might feel chaotic and frustrating. Choosing to be vulnerable about health issues can be difficult, but if you make that choice you may be able to help people through their own struggles in ways you cannot fully anticipate.
I’ve discovered that advocating and supporting people like me is fulfilling and rewarding despite my fears and social anxiety. I’ve always been driven by a desire to brighten people’s days if I can, and then a friend coached me through life-changing surgery and set me on a path toward ostomy advocacy. I had already been involved in the Crohn’s and Colitis Foundation (CCF), but surgery was another beast entirely. My gratitude for the thoughtful visits, emails, and letters that helped me transition to my “new normal” will never be forgotten, and now I hope I can guide and inspire others to grow and adapt as I did: with the help of a powerful community.
Generally speaking, I’m self-conscious about my physical flaws and clear evidence that I’m slowly becoming a cyborg. Celebrating my post surgery life is important to me to refocus on the positive aspects of my new life instead of wallowing in self pity or idly wishing for better health. When things go wrong, I have all sorts of wonderful people to whom I can turn for help and comfort. Getting all worked up every time I have a leak or a dress looks odd and starts catching on my bag is not doing me any good.
Kunde Winery Mountaintop Tour
I celebrate my ostomy surgery every time I get out and explore the world. My surgery certainly comes with challenges, but it represents a chance for me to build my strength and create a new life out of suffering. Even on my ostomy malfunction days, I would never go back to my prior condition. Now I can be carefree and run around in the mountains, relax on beaches, and stroll through forests regardless without the heavy burden of always requiring immediate restroom access.
I’ve done so many things since my ostomy surgery that I couldn’t have imagined when I had my full set of diseased organs. I’ve eaten so much good food and enjoyed exploring so many beautiful places! Now adventures are much less stressful, more accessible, and the likelihood I can actually follow through on plans is much greater.
Speaking out about my ostomy has been an important part of my challenging journey toward self-acceptance. I still struggle with trust and vulnerability issues, but now I have empathetic people who are only a phone call away. As an ostomy advocate, I learned early on that we are much stronger together than we are apart. It’s lovely that so many people want to share stories and advice on their own platforms, but the impact of a supportive group is much more powerful. If you’re not sure where to get started or if you have not had good support group experiences in the past, feel free to reach out and let’s get to know each other!
It’s world ostomy day! My ostomy gives me freedom, but I know my surgery is looked down upon by many. Life is not over after surgery; it’s just beginning. I hope some of these photos are able to compensate for my lack of words today. I am worn out and mentally sluggish, but I hope I am still able to inspire people to get out and enjoy life without allowing their ostomy to be a primary obstacle holding them back. If you have questions about anything you see here, please ask by commenting at the end of the post or email me (firstname.lastname@example.org). Your questions help me decide which topics to tackle! As always, feel free to ask me absolutely anything.
A word of caution: These photos show my best days while ignoring everything in between. I plan to address that issue through writing over time. If you’re feeling discouraged because of your ostomy, it’s okay, and you are not alone. Let’s talk.
Outdoor concert in Chicago
Warren Dunes. Photo credit: Brian Matti
Warren Dunes. Photo credit: Brian Matti
Ziplining. Photo credit: Brian Matti
Relaxing on a raft in MI. Photo credit: Brian Matti
Exploring a lighthouse in MI. Photo credit: Brian Matti
Door County, WI
IBD friends gathering!
Before a free dance session in Grant Park. Photo credit: Brian Matti
Starved Rock State Park, IL. Photo credit: Brian Matti
P.S. My apologies to any readers who know me well enough to worry about me. I appreciate your concern and support.
Even though I have been to IBD education events before, I still keep coming back to this one. The Crohn’s and Colitis Foundation of America (CCFA)’s Illinois Carol Fisher Chapter has a wonderful patient and family educational symposium. This year it’s on Saturday, April 12at 2200 E. Devon Avenue (Lower Level), Des Plaines, IL 60018. Registration starts at 8:15 a.m. and the actual programming starts at 9:00.
With all my research and years of experience, I look forward to this consistently. I like talking to the vendors, hearing updates on medications and scientific understanding of IBD, and chatting with fellow patients. I’ll admit that I’m biased toward a few of the University of Chicago speakers because they care for me personally, but that’s all the more reason for you to come meet them if you’re anywhere nearby! These special people care deeply for their patients, and that passion is especially evident when the address conference attendees. The speakers plan to equip us with the knowledge and variety of tools they need to take charge of their health. I currently need a knowledge boost, because my disease flared unexpectedly this year and I need to make healthier life choices.
Dr. Rubin is giving a few sessions that sound interesting, and Michele Rubin is co-moderating a patient panel about surgery. I also had to include this photo because we look fabulous.
The most important page you should check out to see if this could help you is the agenda for the patient workshops. I’m particularly interested in the talks regarding new therapies, nutrition, and coping with IBD. I’m also a little envious of the awesome programs for kids, because their sessions sound fun and I know those presenters will do a great job. Whatever is going on with your current health, I’m confident you’ll find something useful here. If you’re doing well, I encourage you to come for medical updates and to find out how you can become more involved in the IBD community. Life is better when we look out for each other.
Fellow activists at a past symposium
This symposium is a relief for newcomers and a boost for veterans. I hope to see you there, and feel free to email me (email@example.com) if you’d like to grab a bite to eat with me afterward!
Reflections on the Mental, Emotional, Physical, and Spiritual aspects of Living with Chronic Conditions and Pain. Specifically, this blog explores the effects of Autoimmune Diseases, Inflammatory Bowel Disease (IBD), Interstitial Cystitis (IC), Epilepsy, Seizures, and Migraines on Finding Happiness, Humor, and Balance in Life. Pictures, videos, and links to resources and inspiration are included.