Online Dating with a Chronic Illness

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.

1. How do you tell someone about your ostomy/ health condition? 
2. Does your health seem to matter? 
3. Why are you still single? 
4. 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. 

Loneliness

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.

Just because I have wonderful people in my life doesn’t mean they will miss an opportunity to be goofy.

Social media

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 (partiallyunstuffed@gmail.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.

Photo credits: @n8haddy and @theobessiveeye

Love and Body Image with an Ostomy

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.

Brightening a Hospital Stay

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.

The most festive bed in the hospital.

Looking around at the tinsel made my whole atmosphere feel less medical.

Fuzzy slippers with treads on the soles.

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.

Next best thing to a fireplace.

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.

Goodies!

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.

The bats are my favorite part. They’re from Target and their eyes are so goofy.

Any time of year, you can probably find some excuse for creativity.

On the Fourth of July, everyone got in on the action! I think everything came from Walmart or Target.

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.

I love sparkly stuff so much.

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.

Good toilet paper and some tinsel make life so much better.

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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.

What are some of your coping mechanisms?

World Ostomy Day 2018

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!

Happy World Ostomy Day!

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 (partiallyunstuffed@gmail.com). 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

Archery

Door County, WI

IBD friends gathering!

Before a free dance session in Grant Park. Photo credit: Brian Matti

Enjoying Chicago

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.

CCFA Illinois Education Symposium 2014

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 12 at 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 (partiallyunstuffed@gmail.com) if you’d like to grab a bite to eat with me afterward!

Conference Information

Illinois Carol Fisher Chapter

Last year I made a video!

Product Review: OstoSolutions

I met the OstoSolutions team at the 2013 United Ostomy Associations of America (UOAA) conference, and I am sufficiently intrigued by their Ostomy Pouch Disposal Seals to share their information with you. Please watch the videos and read the excerpts from the company’s website before you read my personal opinions, or this will make no sense and you might think I’m crazy.

On their main website, you can find information and testimonials about their company and product. Their YouTube channel shows you how the seals can be used, and I admit that I reacted strongly the first time I saw these. The idea behind these is almost unbelievable, but it makes sense when you think about it. I’ll provide the basics here, just in case you’re not feeling ambitious.

OstoSolutions Ostomy Pouch Disposal Seal is an odor-control product that seals closed-end and drainable ostomy pouches. The seal is inserted into the coupling opening of any used two-piece closed-end ostomy pouch or used drainable (with Velcro® clipless technology) ostomy pouch so you can dispose of the used pouch in a 100% odor-proof manner.

The OstoSolutions™ Ostomy Pouch Disposal Seal, patent pending, is the only method on the market today that seals the contents of used ostomy pouches in a 100% odor-proof manner. No other method is designed specifically for this purpose, and none of the makeshift methods (black zipper bags, food storage bags) enable airtight, odorless disposal. A shorter change time means less odor: the Disposal Seal is designed to allow users to change and seal the used pouch for disposal in less than twenty seconds. A toilet is not needed for changing the pouch, and by enabling an odor-free disposal, the Disposal Seal ensures discretion no matter where the change is made.

He’s serious about changing your pouch anywhere. He lives in Florida and successfully changes his pouch in his car. Even in the heat, evidently the seal works.

Right up front, I should mention that their Ostomy Pouch Disposal Seal seems most useful for colostomates who use disposable pouches on a daily basis. I have an ileostomy, so my use for this product is more limited. I used it when I went out hunting, and I hope to eventually use it when I go canoeing or kayaking. When I was hunting, I used one of these when my pouch was suddenly very full thanks to too much coffee. I didn’t want to scare the deer away, and they’re pretty sensitive to smell. I used a seal and stuffed the used bag in my pocket because I am brave and I trusted Johnnie’s testimony. I didn’t tell anybody in my hunting party, and the seal stayed intact and kept me odor-free until I could stash it in a trash bag. Now I want to use these seals when I eventually go out on boats or camping because they’re discrete and I really don’t want to empty my pouch and risk any mess at all. I struggle with odor issues all the time, but when I’m at home I always have deodorizer drops accessible. When I’m out trying to be adventurous, I like the idea of  an odor control/disposal solution that enables me to be a bit lazy and sneaky. I’ve heard a few people concerned about disposing of closed-end pouches at work or school and they can’t find any discreet way to handle their ostomy. I’m going to refer them to OstoSolutions whenever I can. There is nothing like these seals, and I’m impressed.

If you’re interested in learning more, getting samples, or seeing updates, here are some ways you can find OstoSolutions:
Main Website (http://www.ostosolutions.com/default.asp), YouTube (http://www.youtube.com/user/OstoSolutions), Facebook (https://www.facebook.com/Ostosolutions), and Twitter (@OstoSolutions).

I encourage you to read Johnnie’s story here, even though this is a long blog entry. He enjoys so many activities and his confidence is contagious! 

OstoSolutions was founded in 2012, on the inspiration of Johnnie Cason to improve the quality of life for ostomy patients. In recognizing the need for a more convenient, discreet means of disposal of used ostomy pouches, Cason designed and developed a 100% odor-proof solution, making life more full and enjoyable for those living with ostomy.

 

In 1980, Johnnie Cason was a healthy 21 year old college student at Florida State University, a junior pursuing an accounting degree. He started having abdominal pain, and was quickly diagnosed with a grapefruit-sized pelvic tumor, deemed inoperable. After months of chemotherapy and two weeks of radiation to his pelvic area, a blockage was discovered in his small bowel, related to the tumor. As soon as he healed from the surgery, the blockage needed to be removed. Radiation was restarted, resulting in 40 percent more radiation than is typically used. At the same time, a new regimen of chemotherapy was utilized since the first combination of drugs was not effective.Now eight months into his treatment, Johnnie was told by his doctors that the treatments had failed and that he had only three months to live. Despite this prognosis, Johnnie never gave up hope and continued on with chemotherapy. Finally, after a year of chemotherapy, Johnnie received the first positive news since being diagnosed. All that remained of the tumor was scar tissue. The recovery from treatment was slow, the road back to health was hard, but Johnnie was alive and determined to pick back up where he left off. He graduated FSU with an accounting degree and began his CPA career; he married, and despite having been told he wouldn’t be able to have children, had two daughters. Johnnie did things physically to push his body, including pursuing racquetball aggressively at the amateur level; 18 months after having been told he had 90 days to live, he came in second in Florida’s State Racquetball Championship.

Shortly after ending treatment, Johnnie became involved with the American Cancer Society counseling cancer patients, and as a camp counselor at ROCK (Reach Out to Cancer Kids) Camp in Florida. Inspired by the courage and determination of these children, he created childhood cancer programs for them in between the summer camps and assisted in fundraising efforts. In 1990 he was awarded the State of Florida’s highest award for a cancer survivor, the Courage Award.

However, the treatment that saved his life had taken its toll, including some bladder and bowel function challenges. In 2002, he developed a condition related to the high doses of radiation he had received. A colo-rectal reconstructive surgery was performed that resulted in an ileostomy, designed to be temporary during the healing process. After eight months with the temporary ileostomy, reversal surgery was performed. Due to the pelvic damage caused by the radiation, the surgery had failed. In 2003, another surgery was performed resulting in a permanent transverse colostomy

When Johnnie left the hospital, he was introduced to closed-end pouches. He began using both drainable and closed-end pouches, but moved to closed-end full-time as he felt doing so improved his quality of life. Still, there was the challenge of disposing of the pouches – there was no truly odor-proof means of doing so, which was a dilemma for a person like Johnnie, leading an active life

Johnnie continued to work, to pursue recreational activities such as golf and fishing, and kept trying to think of a solution. At last, he came up with the idea for a sealing mechanism for used pouches, devised and developed it himself and started experimenting. Finally the day came when he knew he had found it, a simple solution to a challenge faced by anyone with an ostomy. He founded OstoSolutions in order to share his discovery with the ostomy community, believing that everyone should have access to a better quality of life, free from the odor concerns that prevent so many from fully pursuing activities that they love.

Just so we’re clear, you should know that I am not paid to publicize this product. I just think you might want to check it out.