I did my fair share of dating before I met Kevin and as I was sitting here thinking about that I decided to write a guide for dating someone with a chronic illness. The thought occurred to me since I’ve been in and out of the hospital the last two months and Kevin has been asking me what he could do to help. Bear with me as I attempt to tackle this best I can.
These are just tips I’ve put together based on my own experiences living with Crohn’s Disease these past 17 years.
Ask follow up questions. It was always a red flag when I told someone I had Crohn’s Disease and they didn’t have one follow up question. It usually meant they were planning their escape.
Learn the signs of an impending flare-up. My appetite changes and I start to sleep a lot more. As a flare-up is coming on I will sleep as much as I can. Before I was admitted to the hospital back in October I was coming home from work and going right to bed and waking up the next day and doing the exact same thing.
Know what can trigger an episode/flare-up. Since Crohn’s Disease is in the gut mostly there are foods I need to avoid. Kevin knows not to take me to a salad place, it’s going to end with me ordering a pizza.
Understand that sometimes we need to take it easy. Sometimes a night in just watching TV is all we can handle.
Learn what our comfort items. I have my “sick blanket” and a heating pad and I also love a carbonated beverage when my stomach hurts. Some people try to tell me that soda can make things worse, but whatever, somehow it helps, leave me be.
If things get serious try to know how open we are about discussing our illness. Some people don’t want to be known as the chick with the disease. It’s not your story to tell.
We aren’t fragile dolls. We have active sex lives, we can enjoy things, have fun, travel. Please don’t make us feel like we are contagious. Hug us, embrace us, don’t be afraid of us. The person you’re with will let you know their limits or when they need space.
Sometimes there’s not much you can do except be there and trust me, that’s doing a lot. Don’t feel helpless because letting us know we aren’t alone can get us through some of the worst times.
Living with a chronic illness always makes the simplest tasks a little bit more tedious. Getting out of bed is a struggle for everyone, I know. Mornings can be a real bitch when your body is at war with you.
As I’m writing this I am currently on Prednisone. One of the many side effects of this harsh medication is insomnia. Before I go to bed I usually take some Benadryl to help me fall asleep and more importantly STAY ASLEEP until my alarm goes off. I keep my Tervis Tumbler next to my bed filled with ice water. I sometimes wake up thirsty in the middle of the night. Also, the moment I wake up I’m incredibly parched.
Side note: I’ve had about half my colon removed, and 80% of your body’s water absorption takes place in the colon. I can easily become dehydrated, to try and prevent that I have gotten in the habit of carrying around ice water all the time. Living where the average temperature is 90 degrees it just makes good sense to stay hydrated.
Here’s my typical morning:
Alarm goes off, ugh. The first thing I do after I turn off my alarm is reach for my water, I wake up thirsty. It is very rare that I have to get up in the middle of the night to empty my ostomy bag, by the time I wake up it’s usually about 1/2 to 2/3rds full. Pre ostomy days my colon usually woke me up and I always ran to the toilet. I don’t have to rush to the toilet these days, but it’s the first thing I do. Empty my bag.
A quick shower will always help wake me up. I don’t drink coffee so I’ll take all the help I can get. I use my Quick Dry Pouch Cover from C&S Ostomy Covers to help dry my bag. I leave it on while I continue to get ready. I love this product and could not recommend it more.
If I skipped the morning shower I will wash my face and then begin to tackle the dark circles. It’s really important that I try and look like a functioning human being. I will first spray my face with Pearlessence Coconut Rose Hydrating Face Mist (found at TJ Maxx). I don’t know what the benefits are, it just smells pretty and I like how it makes my face feels. I follow up with applying body lotion to my legs and arms, etc. I usually use something from Bath and Body Works. I always pick up a new scent when they are on sale. Right now I am currently using Poolside Pop. I’m a sucker for flamingos.
I’m not a big makeup person, mainly because I’m lazy and don’t feel like applying so much. I apply Maybelline Dream BB Pure Skin Clearing Perfector all over my face followed by Neutrogena Healthy Skin Brightening Eye Perfector under my eyes to help my complexion and hide the dark circles. I follow up with some eye makeup and another spritz from the Pearlessence Coconut Rose Hydrating Face Mist to set my makeup.
If I washed my hair I will towel dry it and spray it with L’Oreal Air Dry It Wave Swept Spray. I love this product and it’s only $3.99. My curls will stay frizz free for most of the day, even in this Florida heat and humidity. Also, the fact that it takes seconds to apply is a major plus. Other days when I’m extremely lazy I will just pull my hair back into a messy bun and try to make it look somewhat presentable.
Once I look presentable I make myself some toast so I can take my Prednisone. You can’t take steroids on an empty stomach, I’ve tried it in the past, not fun. Now I can pretend I’m human and head out the door and try and get through the day.
Thanks for reading this one, I know this isn’t a groundbreaking post, but thought it would be fun to share morning routines and what goes through my mind as I prepare for a day.
There are some mornings where I will sleep in and only give myself 5 minutes to get ready because I just need every extra second in bed and rather just throw on anything and pull my hair back and deal with it. Those days are the worst. Every day is different and I never know what to expect, having the same morning routine helps brace me for whatever might come, especially the moment my body turns on me.
I wrote a post awhile back about what you can wear if you have an ostomy. Long story short, you can wear whatever you want. I thought that today I would dive back into this topic, more about tips on how to wear what you want.
I think the best way to show you is to give you a glimpse into my wardrobe and my day-to-day outfits. I’m no fashion blogger and also you’re about to see some high-quality bathroom mirror selfies because that’s how I roll. I really just want to give you a sense of the different styles you can wear and how your wardrobe doesn’t have to be dictated by your ostomy.
The first thing you need to know is that I wear ostomy wraps daily. I cannot live without them. They are amazing. You’re able to hide your bag and keep it tucked in and this allows you to wear just about anything. It also keeps the end of the bag from chaffing against my leg. Tip: maternity bags can also work as an ostomy wrap, they don’t have the pocket that the original ostomy wrap has, but you can fold it and it works pretty much the same.
Most of my clothes are from Old Navy, Target, and TJ Maxx. Occasionally I’ve found some cool items at consignment shops. I’m probably going to mention Old Navy A LOT, but I’m in no way affiliated with them, I just love their stuff and they always have a good sale.
Old Navy dress and Target shoes. This is the Fitted Crew-Neck Tee Dress and I have it in two patterns and will probably add more to my closet. This dress is super comfy, but be warned, it’s more form fitting, which means, when your ostomy bag fills up you can see the bulge. This doesn’t get in my way. If I’m sitting down at my desk no one knows but me and when it fills up I just go to the bathroom to empty it. A simple proper hand placement in front of me disguises the bulge, or I just carry my sweater in front of me.
Old Navy top, Old Navy white jeans, and Target shoes. These flowy tops are fantastic, super flattering and forgiving and perfect for hiding ostomy bags even when they are full. As you can see below you can view how I wear my wrap and how it makes it easy to wear with pants. The waist of my pants is not uncomfortable around my ostomy one bit.
Old Navy top, Old Navy pants, and Payless shoes. Someone once told me don’t tell people you got your shoes at Payless. I’m not a snob and I appreciate a good bargain. So yeah, I bought these shoes at Payless for $10. In case you missed that, I said Payless. Anyway, back to my outfit. Peplum tops are another forgiving style that is easy to dress up and dress down. The pants come up to my waist, and once again, not uncomfortable at all with my ostomy.
Old Navy dress, H&M cardigan, and Payless shoes. This is the Fit & Flare Cami dress and I have it in at least 10 different patterns and colors. This one is my favorite print, I call it my Florida dress. It reminds me of Blanche Devereaux’s bedroom. If you don’t know who Blanche Devereaux is, we can’t be friends. The fabric flares out above the ostomy which is a plus. Anyway, whenever they have this style on sale I usually snag another dress. I can dress them up for work or dress down for casual weekends.
Old Navy Jeggings, Old Navy tunic, and Target shoes. I’m ashamed to say that I have only recently discovered jeggings and let me tell you something, total game changer. I love wearing jeans, I find them so comfortable and easy. Jeggings? Even easier. The waistband is elastic, so the top is like leggings and the rest is just like a normal pair of jeans. Now I have this stretchy waist around my ostomy, which is FANTASTIC. Tunics are another favorite of mine, they are flattering and comfortable, two things I look for when buying clothes. I’m all for comfort.
Old Navy Top, Old Navy Jeggings, Target Shoes. I could have worn what I wore to work for date night, but my top was dirty, so I felt like changing. I love this top, and yes this is a tropical print on the first official day of Fall, but I live in Florida and we wear sandals year-round.
Old Navy Denim Shorts, Old Navy Top, Wal Mart button-down top. Living in Florida I wear shorts year round. The easiest thing to do is throw on a top and shorts. I bought the purple top pictured above at Wal Mart for my photo shoot two years ago. You can see it on the About Me page. I was lazy and didn’t change the wrap for this picture, normally I would wear one of my white ones when wearing something lighter.
Old Navy Top, Old Navy Jeggings, Target Shoes. Let’s be real, on Sunday I stayed in my pajamas until noon and only got dressed because we had plans to meet our friends for an afternoon of bowling and Thai food for dinner. Once I’m home, I go right back into my pajamas, even if I’m going out later. It only takes me two minutes to get dressed.
I hope you enjoyed this groundbreaking glimpse into my wardrobe. I really just wanted to showcase the different outfits you can wear without thinking about your ostomy. Let me know if you have any questions, I’m always happy to discuss.
Update: I enjoyed this one a little too much so I’ve added more outfits. Enjoy!
My entire life my mom has always been my health care surrogate. She is the one I turn to when I am sick. Late night/early morning ER visits, overnight hospital stays, bringing me food, helping me shower, etc. This isn’t surprising, I was 9 the first time I had a colonoscopy.
As you get older, the roles people play in your life changes, as they should. New people come in and out of your life. This is something that everyone goes through. However, this is the first time in my life that the caretaker role in my life has drastically shifted. My boyfriend and I recently moved in together. Exciting stuff, right? For me, it’s such a normal milestone, almost too normal. I missed out on a lot of normal milestones growing up, so now it’s time to celebrate the good stuff!
Over the course of our relationship, Kevin has been there for me when I’ve been sick or simply when I wanted to stay in and just watch TV. When I dealt with my ovarian cyst issue earlier this summer (I’m actually still dealing with it because the cysts are back!), I leaned on Kevin more than I had in the past. He dealt with Miami afternoon traffic to get me to the ER (which was way on the other side of town). He stayed with me until I was admitted to a room at 2:00 a.m., even though he had class the following morning at 8:00 a.m., and even though I kept telling him to leave.
Adding a significant other to your list of emergency contacts is a big freaking deal when you have a chronic illness. Listing someone as your health care surrogate is pretty much the highest level of trust. I’m basically saying, I trust you with making decisions regarding my care in case I cannot. It sounds intimidating but I explained to Kevin that if that ever happens the doctors will/should explain everything in a way where you will be able to make decisions for me.
Yes, I am very excited about this new chapter in my life, but at the same time, I was nervous. I wasn’t nervous about Kevin, it was more of a mental block for me. The past year and a half have been amazing, I didn’t want to taint it with the burden of my illness. That’s the best way I can put it in words. I understand the best relationships survive the good and the bad, it’s just easier said than done for me to completely let go of this part of my life and let someone else take control.
He’s been willing since day one to take on more but I wasn’t ready to put that on him yet. Over the past few months, I’ve definitely allowed him to take on more as my caretaker or health care surrogate. Well, one time he just showed up at the hospital even though I told him I was fine, but I was glad he didn’t listen to me and was there. He was right. Don’t tell him I said that.
I’ve had to learn to rely on my mother less and lean on my boyfriend more. You don’t just go cold turkey and completely switch over. It’s a gradual change. Let’s be real, my mom is still going to be there and involved. We’ve even scheduled some of our doctor’s appointments together, typical mother daughter day, right? Haha.
In the mean time, I’m not letting any of my mental blocks get in the way of this new exciting chapter in my life. Yes, my mom isn’t going to be the first person I call now when I need to go to the hospital, but she will still be there whenever I need her. Some things don’t change.
One important thing that MUST happen when your significant other takes on more responsibilities with your health care: you have to have the TALK. Every person who lives with a chronic illness knows what I’m talking about. In the event that you are unable to make decisions regarding your care, what are your wishes? We are talking worst case scenario here, but you need to make people in your lives aware of what you want.
Having an Advanced Directive is a big plus. I have it all written out and signed, it’s super official. Making sure your partner fully understands what you would want along with having it in writing is one of the best things you can do.
I’m still going through this transition so I’m still learning here. The best thing I can say is to just keep your partner in the know as much as possible and let them take on more when it comes to being your health care surrogate.
Right now you can find me trying to find every form that needs to be updated with my new address and emergency contact information.
Living in Miami, swimsuit season is year round. I know my family and friends up north just love it when I post bragging photos of our perfect weather while they are shoveling snow. I understand that for many of you, swimsuit season is only during the summer and since spring is here and summer is right around the corner lets talk about swimming with an ostomy.
Eric from Vegan Ostomy has some great product reviews on things you can purchase for your ostomy to use while swimming. Many ostomates swear by Hy-Tape. I’ve tried it, and it’s never really done anything for me when it comes to swimming. It always comes off. I have found that just going as is, with my bag on, works just fine. The trick is not putting a brand new bag on and then going right to the pool. If you need to change your bag, you should wait a few hours before going into the pool. The adhesive needs time to set for it to be effective.
I’ve purchased the swimming wrap from Ostomysecrets and used it once or twice. It was okay, I didn’t really feel it was necessary and I could only wear it under a one piece. It was very similar to my everyday wrap. Also, I felt like I had too much on in the pool. All that wet material wasn’t that comfortable. But it might work for you. Ostomysecrets also has special swim bottoms that might work for you, check them out.
When I’m swimming I kind of keep my eye on the bag from time to time. I make sure I empty it before going to the pool, no big deal. Between dips in the pool I glance at the wafer to make sure it is still sealed, just for my own piece of mind. This sounds like more work than it is, but you wouldn’t even notice me checking.
Typically, once I’m done at the pool I usually change my bag after I shower. A few times I’ve noticed that the bag didn’t need a change (the adhesive was still completely intact) so I kept on going, business as usual.
I freaking love the pool. Growing up in Miami every weekend we went to our local community center and I spent pretty much every day of summer there. After my first surgery, I had an open wound that became a fistula right under my belly button. Not pretty or fun. It took me over a year to go back to the pool and I was all covered up in a one piece. I missed swimming so much, and even though my doctors told me I could still swim, I felt like some freak that shouldn’t be out in public. Harsh, I know. I am my own worst enemy.
The first time I had a colostomy I did not let it stop me from going to the pool, but I did only wear one piece swimsuits. I never publicly displayed my colostomy and no pictures exist. I wasn’t ashamed, but I wasn’t ready to be so public about it.
Back in the summer of 2013, I went to the beach and wore a bikini for the first time since I had surgery. I didn’t have a colostomy at the time, just a massive scar. It was a big deal and my friends helped make it a lot of fun. Once I took my coverall off I realized most of my fears were just in my head. No one cared. I looked around and people were all keeping to themselves, being comfortable in their own skin, enjoying life. None of us were photo shopped models, we were real people with curves and scars. It was so liberating and I realized no one cared about my scars. That day was a big step for me.
I’ve worn your standard bikini showing my ostomy to the world, a standard one-piece when I’m not in the mood and most recently I’ve worn some fabulous high waisted bikinis that do a great job at hiding the bag. I did a search on Amazon and purchased a couple for a cruise I went on earlier this year. The high waisted bikini is super flattering on all figures and does a great job at keeping the bag hidden. My scar still shows, but I’m okay with that. It really is up to you and what you feel comfortable with.
I found the high waisted bikini pictured above on Amazon. It was only $25 and a great buy. The high waist keeps the bag completely covered, you don’t even know it’s there. Yes you can still see the top of my scar, but I’m okay with that. This cut comes in several different colors and patterns. I want them all.
This bikini has been a favorite among my friends. It’s got that retro vibe, and once again the cut is super flattering. This is another Amazon find and again only $25. It also comes in several different colors. This cut covers more of my scar than the previous bathing suit, just for the record my scar is pretty big. Notice how high up it goes. For many of you, this might completely cover your scar.
I also wear your standard bikini from time to time with my bag on full display. Not for everyone, and I’m not always in the mood, but sometimes I go for it. What the hell? I’ve never had an issue and no one has ever made me feel uncomfortable. FYI – all bikini’s you see below are from Old Navy, the white one was from Walmart.
You should be comfortable, beach and pool days are supposed to be fun. Get out of your head and enjoy yourself.
(Updated on August 29, 2017) In the market for a new swimsuit? Here are a few I’m currently eyeing:
Disclaimer: Some of the links in this post are affiliated links, meaning I might make a buck or two if you click the links. Help my pay for some of my medical bills and click away! This girl has got to eat.
When it comes to your personal struggles and battles with a chronic illness, when is it okay to share on social media?
I used to be very private with my battle with Crohn’s Disease. Pretty much the first 10 years I wasn’t very public about it. I was diagnosed pre social media (remember those days?) and every time I was in the hospital my mom would have to make the many many phone calls (including an international call to my father – long story, we used to keep him in the loop). That’s what we had to do and we dealt with it.
Even as Facebook began to overtake our lives, I didn’t really post about my health. I’ve found old Facebook statuses that have vague comments about not feeling well here and there. Remember when Facebook made us talk in third person?? At one point I had created lists among my Facebook friends and I used these lists to only update close friends and family when it came to my health. I loved this feature. I didn’t have to share personal information with every freaking person, just those I wanted to keep in the loop. (This feature might still exist).
Then in 2011 when I began blogging I discovered Twitter. On Twitter I found hundreds of others like myself and I felt more comfortable talking about very personal health issues. Odd, isn’t it? That I felt more comfortable talking about it with strangers than I did with my own friends and family? I think it has a lot to do with how embarrassing Crohn’s Disease can be. Talking about pooping my pants with people I know is difficult, talking about it with strangers from around the world who could relate is so much easier.
After I opened the floodgates via twitter and blogging I couldn’t stop sharing and I learned to post about my issues on my own personal Facebook page. I probably annoyed some of my friends, especially when I began fundraising with Team Challenge. Sorry for annoying you with posts about my disease and how I’m running a half-marathon to try and find a cure. Most people were supportive, but I heard some comments through the grapevine.
According to certain people, there are things that should be kept private. Here’s the thing. We are all completely different. I can tell you that I gained nothing by keeping it all in, in fact I probably only hurt myself in the long run. This disease makes you feel ashamed of yourself, and with shame comes the inability to open up. To the people who want to keep their struggles private, I am in no way trying to shame you. You do you. But to the people who THINK they know how we should handle our struggles (especially when they know nothing about it) I beg you to walk a mile in my shoes and then keep it to yourself. If you don’t like what I’m saying, you don’t have to listen. This isn’t forced upon you.
Don’t let anyone make you feel bad for sharing what you are going through. There are no set rules anywhere. Social media is still pretty new and is constantly changing. We get to decide how social media works for us, and that’s that.
I’ve been known to post ER selfies from time to time. While I may be in a sucky situation, at least I can use social media to keep people updated and show that I’m okay. I’ve even Snapchatted my way through a colonoscopy prep, which is a weird way of trying to entertain myself.
Trying to bring it back to my original point. When should you post about your battles and when should you not? I sometimes find myself holding back because I don’t want to worry family members who read my posts. Other times, I just can’t be bothered because then I will have to constantly update people on what’s going on. I have no set rules, I post what I want and when I feel like it. There are hospital stays that go without any mentions or ER selfies, and there are others where I’m live tweeting everything. I do as I please.
Over the last few years I have found a balance that works for me among the different social media platforms. I don’t use them all the same way. This is the formula that I feel comfortable with and have developed over the past few years.
Personal Facebook – I typically don’t post anything regarding my health on a typical day, unless it’s a major update regarding hospitalization or surgery. I also will post anything related to fundraising because I want that $$$.
Facebook Page – I created a Facebook page for The Sick Adventures of a Semi Colon Girl to have somewhere on Facebook just for my health related posts. I invited my personal contacts and they can choose to follow for my updates. This is also a great space to promote my blog. This way you are only “annoying” those that choose to want to hear about your updates and not really nagging your personal contacts that aren’t interested.
Twitter – Twitter is all Crohn’s all day long. I also post personal opinions about shows, movies, pop culture and politics. I’ve had some political comments take off (cough 600 retweets cough). Plus Twitter is a great platform to post multiple posts in a day. People on Twitter follow you because they like your posts, they want more of it. The more you post, the more followers you get. This is the platform for you if you have a lot to say about everything and anything. We all have that friend who posts a million times a day on Facebook and we roll our eyes. On Twitter, that kind of stuff is encouraged.
Instagram – Last year I made a big change to my Instagram. I made it private. Now, I thought about creating a personal one and keeping my Semicolongirl account public, but I thought that was a pain in the ass. I already have a work account I manage, I didn’t want to toggle between so many different accounts. I love pictures and in my personal life I like to share things with my close friends and family. I decided to keep my Crohn’s posts on twitter and my Facebook page and leave Instagram private. Sorry if I blocked you, it wasn’t personal. Although Instagram is such a great platform to connect with others, I opted to make my account private. I did receive more than one message from people asking why they were blocked. That’s the story.
Snapchat (username Semicolongirl) – I’m relatively knew to the Snapchat game, but I’ve grown to love it. It’s a lot of fun, especially when I’m bored waiting at the doctor’s. It’s a great way to post multiple pictures from the hospital and other Crohn’s related pics. I roll my eyes at those who post multiple Instagram pics, but multiple Snapchat photos? Yes please! I use this to post pictures of my cat and silly selfies, nothing ground breaking. I don’t use it everyday, so I may not be the best Snapchat user, but I do have fun with it from time to time.
Like I said before, you really have to find what works for you. You shouldn’t feel obligated to post, social media is supposed to be fun and supposed to connect you. You can use it as a tool to find a support group and more information about your illness, like I have. You shouldn’t feel the need to hold back because you’re worried about annoying someone. Honestly, if someone doesn’t want to hear about your posts they can unfollow you. No harm done. Don’t be offended if you find out someone has unfriended you or unfollowed you, more important things going on in your life than social media numbers.
Happy posting! Post what YOU want, when you want and forget about the rest. Your social media is about you and you get to decide what information you want to share, no one else gets to dictate that.
Not that I can read minds, but I know a lot of people are curious about how people with ostomies have sex. Well, short answer is: the same way you have sex without an ostomy. It’s not something that gets in the way, ostomates have sex (if they want).
Not that I want to divulge about my first time, it was before I had an ostomy, but I did have a nasty scar. I was worried about that and maybe was in my head too much, but quickly managed to get past that. Without going into details it didn’t stop us. I think I may have spent more time in my life keeping people at arm’s length because of my negative self body image. Thanks Crohn’s.
Fast forward to me with an ostomy because that’s what you’re here for. I get it, so prepare yourself for anatomy lesson. I’ve mentioned it before briefly, but I’ll try to expand on what I have previously said. For me, there is no difference. I still have my colon and rectum. Those who have had their entire colon and rectum removed sometimes have an adjustment when it comes to sex. Stephanie from The Stolen Colon did a great post explaining what it’s like. Anatomically speaking, the vagina is right next to the rectum, if you remove the rectum the vagina might shift. I can’t speak from experience on what that’s like, so please read Stephanie’s post.
Recovering from surgery is not easy and it’s not quick. Don’t expect to be back in the swing of things for at least 4-6 weeks. It varies from person to person. Just imagine if you are recovering from surgery with a major incision, you’re probably not going to want someone to touch you.
When it comes to sex with an ostomy, for me, I wear a wrap. I actually wear the wrap all the time, it keeps the bag from swinging around and bothering me. It’s comfy and that way I don’t have to worry about it. I have also gone without wearing a wrap and had no issue. It’s a personal preference. My boyfriend doesn’t care either way, he just wants me to be comfortable.
I do strongly suggest that you empty your bag before you have sex. It just makes sense. Anyway, you would do the same thing before any other kind of physical activity. It’s just habit for me to empty it when it fills up anyway, I don’t even think about it.
My boyfriend and I didn’t talk about it beforehand, we sort of just dove right in. However, we were friends for awhile, so he knew I had a colostomy and had seen pictures. He told me later that he did google it to see if there was anything he needed to know (adorable). I was going to ask him if he had any questions, but being my awkward self, I didn’t want to ruin the moment.
I think the main concern from our partners is our comfort and if there is anything they need to know. Sometimes we have to remind them that we aren’t frail china dolls and that we are functioning human beings with a natural sex drive. The best thing you can do is talk to your partner about your concerns and theirs as well. You’ll both be able to enjoy yourself.
Honestly, you’ve handled some awful situations already, sex is the fun stuff. Get out of your head and enjoy yourself. Live your life.
If you are facing a decision about surgery and getting an ostomy and are worried about sex and you want to talk to me about my experiences shoot me an email.
Don’t forget to practice safe sex. Same rules still apply.
I try to avoid this situation, but every once in awhile I have to change my entire ostomy bag while I’m out. For this reason I always carry extra supplies on me. Hollister and ConvoTech provided me with supply bags to use on the go when I first had surgery. I still use the ConvoTech one when I’m traveling and need to pack more supplies. I stumbled upon this cute R2-D2 cosmetic bag at Hot Topic over a year ago and decided to try and make it work, and it does.
I always carry enough supplies for two bags, and anytime I’ve had to use my supplies I must remind myself to restock my little bag next time I’m home. I would hate to be out and about and in need of supplies.
A leak out in public is rare, but it happens. When it happens I can typically feel it, like something isn’t right and I might smell it.
The handicap stall is always prime real estate for a public bag change. More space, most of the time there is a sink and you can also utilize the baby changing station if it is available. Other times you have to work with what you got, which may be a very tiny stall.
If you don’t have the luxury of the handicap stall I have found that the best thing to do is to change your bag while sitting on the toilet. This is also a better option just in case your stoma decides to have some output mid bag change, you won’t get your clothes dirty.
When I’m changing my bag in public I get everything ready before I remove the old bag. I need to move fast and not because I’m worried about hogging the bathroom, people waiting will have to chill. I want to get the bag on before I have output and a mess on my hands. If I’m home cleaning my stoma and there is output before I’ve put on the new skin wafer and bag, I have more leisure and cleaning supplies.
On the other hand, you have to be careful about rushing and being careless. If you don’t apply the bag correctly you will have a leak. So hurry up, but don’t hurry up. I’m no help, right? If you’re new to the bag life, you really do get the hang of it. I can change my bag in my sleep now.
Anytime I’ve tried to cheat and do a quick fix, and by quick fix I mean using some paste or a piece of a barrier ring to try and fix a leak, I end up regretting it. Just start with a new bag and new wafer. It will take a few more minutes, but will save you in the long run.
I purchase air freshener from Bath and Body Works. They have so many scents and the bottles are travel size and fit perfectly in my bag. I always wait for sales and purchase multiple at a time. In my opinion $7.50 for a little bottle of air freshener is overpriced, but they last and the size is convenient.
Being out in public when you first have a stoma can be nerve wracking. You are worried that others might notice your bag (they won’t), you are worried about leaks (it could happen, but not as much as you think), you are worried that you will never go out in public again. Take a deep breath. It’s an adjustment, but you will get there. Trust me, I’ve done it twice now.
You will really get to know how long a bag will last without needing a bag change and that way you can change your bag and clean your stoma at home, before a leak happens. My skin is very sensitive, if I leave my bag on for more than three days sometimes the skin will get irritated, so I always try to change it on the three day mark. This prevents skin irritation and public leaks. However, life is messy and not perfect, sometimes shit happens.
If this is the first thing you are reading about me, let me save you some time, I have Crohn’s Disease and I currently have a colostomy, or ostomy as I sometimes refer to it. Colostomy specifies what kind of ostomy, I don’t want to confuse anyone. The United Ostomy Association of America (UOAA) has put together some great information and resources about ostomies. So if the UOAA has all this info, then what am I writing about? These are just random things that you may not find on WebMD or Wikipedia. Things you learn by acutally living with a colostomy.
I’ve had my current colostomy for about two and half years. I say “current” because a few years ago I had a temporary colostomy for about a year. Here are a few things you may not know about ostomates:
Ostomies can be temporary. A surgeon can reverse it in what is commonly referred to as a “take-down surgery.”
The opening that is placed above the skin is called a stoma. The stoma is part of your intestines, so I get to see my guts all the time. Feces exits through the stoma into a bag.
We have no control over the stoma, I can not clench and try to hold anything in, including farts.
Yes, we fart. No, you won’t smell it because the bag is sealed. You may hear it depending on the volume and your proximity. Typically my stoma likes to “talk” when everyone is quiet.
We are warned to avoid certain foods, things that may cause blockages and such. Popcorn, seeds, roughage, etc.
Hydration is important, especially for those with ileostomies, because if you don’t have a colon, you are missing out on a lot of water absorption. It is very easy for ostomates to become dehydrated.
Ostomies are not a recent development and go back to the late 1700s. In fact, the first ostomy collection system was basically a sponge pushed against the stoma to absorb any fecal matter. Gross. Thanks to doctors who are constantly trying to improve the lives of their patients, the sponge system didn’t last. There were leather pouches, glass bottles and rubber bags and finally the supplies we have today.
There are different pouch systems. Some are a one piece and others are two-piece, meaning there is a wafer that adheres to the skin around the stoma and a bag is attached to the wafer. It’s the patient’s preference, both are available and work well.
I prefer a two piece system, and usually change it every 3-4 days. I have sensitive skin and it can be irritated if I leave it on longer. Some people leave their appliances on for up to seven days.
Hospitals tend to use clear bags so nurses and doctors can see your stoma and output. I don’t wear the clear bags unless I am in the hospital.
You can shower with it on or off. A stoma can be exposed in the shower, soap and water will not harm it. In fact, you are encouraged to expose your stoma in the shower to get the skin nice and clean.
It doesn’t hurt when I touch my stoma, there are no nerve endings. It takes some getting used to when cleaning, at first you proceed with caution.
Swimming is allowed. I will change my bag once I am done swimming because the adhesive probably has weakened and I don’t want to encounter a leak later on in the day.
I can sleep through the night without having to empty the bag, however if I do wake up and notice that my bag has some output, I will get up to empty it so I’m free to roll around. It’s just more comfortable.
We can wear whatever we want. I wear ostomy wraps, which help keep the bag in place so it doesn’t rub against my skin and irritate me. It’s basically a comfort thing. Maternity bands do the trick as well. You can read my post about Ostomy Fashion.
Ostomates can have sex. I typically keep my wrap on, it’s a comfort thing, but have gone without and had no issues. I do make sure to empty the bag before any intimate moments. When I have a chance, I would very much like to tackle writing a post that delves more into intimacy.
People of all ages have ostomies, including infants. It’s not just for old people.
You can’t smell it, the seal around the stoma keeps everything, including odor, in the pouch.
There are no restrictions for travel. You will go through an extra pat down at security check points. You can read my travel tips here.
Typically there isn’t a diet restriction, but it varies from person to person.
Women can have healthy pregnancies with an ostomy. Stephanie from The Stolen Colon blogged about her journey as a pregnant ostomate. I haven’t experienced that (yet), I encourage you to read her blog if you haven’t already.
Another great source of information is Eric of Veganostomy.ca. He publishes great content for ostomates, including product reviews.
My ostomy is permanent. There are no plans for a take-down and I’m happy with that. I no longer worry about running to the bathroom and missing out on so much. It truly is a life saver.