Am I the Only One Getting Paranoid About My Ileostomy?

Hi everyone! I have had my ileostomy for about 4 years, and I am not sorry I did. Never had a problem with it being done, and I really am happy about no more pills, no more colonoscopies, and no more rectal bleeding. Yeah, no regrets at all. In the four years, I can honestly say that the worst part of having “Gabriella” is that a few times, I have experienced leakage, and when I did, it was always a doozy. But then again, when wouldn't it be? One time while I was traveling, I discovered when I went into the ladies' room, “poop” was coming out of the top of my jeans! Long line of women waiting for a stall, but when my turn came, I got lucky, and the one that was available was the handicapped stall, complete with a sink! I stripped down to nothing and took my time changing my clothes and getting myself back into order. I had learned from early on to ALWAYS have extra clothing and, of course, extra supplies. I would love to say that this only happened that one time, but if I did, I would be lying. I have sprung a leak in my doctor's office just before leaving (and sent my husband to grab my emergency bag), another time in a restaurant (now, that was fun!), and other times while sitting at home and discovering a warm feeling in my clothing that quickly became a mess. My bag actually popped one night in bed, with poop going all over the bed! Changed sheets and clothing, and dying of embarrassment followed, but my husband and I got over that. I have changed my ostomy companies a few times and now feel like I hit a product that does work for me. All in all, I know accidents do happen, but goodness gracious, you never know when it will be! I have found that lately, I am becoming more and more aware of what I need to think about with my “new normal.” The things that go through my mind seem really off the wall, or are they? I worry about long car rides that I might spring a leak while on the road. Again, I ALWAYS have supplies with me, but what if the road you are traveling on is long and goes on forever before you reach a bathroom? What if the bathroom DOESN'T have a sink within the stall, then what? I worry about going on cruises and getting off the ship on some island where bathrooms are few and far between. What if the ship goes down, and I am in a lifeboat? What if I spring a leak and go down in the ocean surrounded by poop? (Not really worried about that, but it does cross my mind!) I know life goes on with an ileostomy, but am I the only one who thinks about what can go wrong at any time of any day? Luckily, I am married to a wonderful man who does know what I am going through and understands my dilemma, so I don't worry about that. It is I who am getting paranoid about all the things that can happen when I am not at home, safe within, near a sink and toilet! Any suggestions???

Yep.. 🫵 should pull over and let the paranoia off at the curb. Even after 4 years, you are like this?.

I can see the first and second years, because that's an adjustment time.

Ileo 9 years here. I stopped worrying knowing I have a great appliance set-up. I'm so confident with this, I don't bother bringing any clothes or supplies with me anywhere within the tri-state area.

You should feel this way now that you have a decent appliance.

Worries will give you an ulcer. You got this. Realize it and live!

Respect for being honest about your feelings shows you're ready to take it on and overcome it. No, you're not the only one; it's more 'normal' than most people will admit for everything to catch up with you and hit you like a ton of bricks years later after surgery. I've seen it happen many times, even 20 to 30 years later when they think it's all over and done with. Who knows, it could hit me tomorrow; never say never. Talking is the best therapy, whether on here or to family and friends or both. As I always say, talk, talk, talk, and then talk some more; better to get it all out.

Yep, you're the only one. Why stress over things that 1) you have no control over or 2) that haven't even happened? All you're doing is stressing yourself out for no legitimate reason.

Yes, leaks happen, but I look at it this way: even those without an ostomy can get food poisoning or gastro and shit their pants. Do they let it limit their life? No, they just clean themselves up and move on like we do.

As for worrying about cruise ships, those things are just floating, bacteria-ridden petri dishes anyway. I have heard all the horror stories from non-working toilets, so all on board have to take a dump in plastic bags (hey, that sounds familiar!) to rampant gastro, pneumonia, Legionnaires' disease, and chest infections (not to mention that "flu" that was doing the rounds a few years ago - it's still alive and well in cruise ships' air-conditioning ducts).

I think if you sprung a leak on a cruise, that would be the least of your problems, and even if you decide to venture out on the high seas (as plenty of people still do), you will be in the same boat as your fellow passengers (bag or no bag makes no difference).

Worrying about shit that may or may not happen is a wasted life. "Feel the fear and do it anyway." Don't overthink it; just get out there and do whatever you want to do. Bon voyage! 😉🚣⚓🚢🥳

My Ostomy Journey: Bruce | Hollister

Listen to the Warrior - Don't overthink it and don't let it define you. Go and enjoy yourself 🍷

Thanks for your replies, and I truly do appreciate it. I guess I should just stop worrying, and hopefully one day I will. Sadly, this doesn't seem to be the day…..

G-Day BD,

I wrote this just the other day on another lady's problem.

It's a saying my father had, and it has stayed with me all my life.

"If you worry and nothing happens, then you have worried for nothing, but if something does happen, instead of worrying, just fix it."

In other words, stop worrying.

The craziest thing you can say is "What if."

Regards, IGGIE

First, I'm very sorry this is a struggle for you. Your decision to share an internal struggle takes real courage and might even mark when you decided to really address something that's getting in the way of you fully enjoying your life.

My husband has a colostomy, but I can speak from decades of experience where the mind lives in the future and gets into a loop of playing out worst-case scenarios.

I've come to understand that the mind is a powerful tool that operates so brilliantly that what we imagine actually feels real. A vivid dream is real while asleep.

Knowing this, playing out worst-case scenarios is tied to our survival mechanism. Driving slower in bad weather or avoiding high-risk activities is tied to our ability to imagine a worst-case scenario. So it's really a good thing, except when the mind gets ahead of itself and patterns into a loop that can become difficult to turn off.

Your husband sounds wonderful and understanding, and I'm sure he'd love to see you regain your peace of mind. There are resources that have the training and compassion to help us navigate our minds and may be a guide for you to regain your peace.

The photo in your bio projects pure joy and happiness. I hope your journey brings you even more of what you want and deserve. We all deserve this!🌻

Barbie

During my working years, a title I was once given on my business card was Analyst… sadly, it was an accurate title. Yep, I analyze EVERYTHING and then tend to go into worry mode. I understand it is called analysis paralysis. I don't think there is a cure. I guess we just have to put on those magic shoes and “just do it.”

Worrying is a complete waste of time and, unfortunately, a title and trait I have never been able to shed. Nowadays, I embrace this title as an ANAL-ist! and life goes on….🎶jb

P.S. you missed one of my worst fears…. what if the toilet won't flush😬

Interesting. Would you share the great appliance that has worked well for you? It might be valuable to give it a try. Thanks.

I will do that once home. I will furnish the brand name and part numbers involved to help you and others out, but keep in mind, there are great appliances out there under all the brands. This one happens to work for me. It's made by Coloplast. The Senura Mio Click. I use a barrier ring. I use a flange belt... Just click my profile. I posted my appliance there with part numbers.

The funniest part is if you are on a cruise ship that sinks and you are in a lifeboat in the middle of the Atlantic! Maybe the officer in charge will let you float alongside the boat in the water, properly secured and wearing a life jacket! Not to worry, many others saddled with this affliction probably suffer from similar fears; hopefully, they will never come true. Best wishes.

You just instilled fear into half the folks here who cruise yearly. Nice touch. Not about the sinking of the ship... no... but being tethered to a lifeboat. A life jacket. I like your thinking. 😉👍...

Hmm a day later.....

You know with Hollywood being so hard up for reruns and sequels, I can see a new thriller here. "JAWS MEETS THE TITANIC."

A friend sent me an email last week that said, "95% of the things I worry about never happen...so worrying works!" Blowouts happen, and at inconvenient times, and even more inconvenient places - we've all been there; you're in fine company! I'm just 6 months into my sentencing and have had complications and leaking issues, so I'm cautious, still sleeping on chuck pads. But for me, I say, "I've got my stoma; it doesn't got me." The first few weeks in the hospital post-op, I did feel a bit like a victim of my stoma...but that thinking doesn't improve anything - us ostomates are rough, tough, and resilient. As for being in a lifeboat, your bag could act as a flotation device! If you got lost on a snowy mountain while skiing, it would help keep your hands warm!

Hello everyone! I can't begin to tell you how happy I am to have found this site. When I started on my journey, I was so relieved to have found a place where everyone knows and understands what I am going through, and to know that I am not alone. I want to thank everyone for their responses, and I must say, I enjoyed reading each and every one. Some were serious, some were comical, but mostly the replies were honest and understanding. Thanks so much for taking the time to help calm down one of your fellow ostomates……

Hi Warrior. How goes the battle with our common enemy? The eight-member band on the Titanic kept playing on the forward deck till the very end. The losses among the crew were even greater than in third class. There were some very brave men then. Best wishes.

I'm not much of a worrier in general, and I attribute that to a) the 23 chromosomes I received from my father and b) my tendency to think, “What's the worst-case scenario?” when those thoughts do occur. I do what I can to anticipate and prepare, but I also trust that I'll just figure something out if need be. I don't mean to minimize your worry, as I know it's very real…I just hope you can spend less psychic energy on it and more on the opportunities you now have!

As an introvert, “talk, talk, talk, and then talk some more” kicked my limbic system into fight or flight! LOL Good thing we don't live together, Ben38!!

Hi from Yorkshire, England

I've had Fred for 58 years and always wear a stretchy 1-inch wide belt that hooks to either side of my bag.

It's got Velcro to tighten it, so I tend to pull it a bit tighter when I first do a change.

If I forget to put it on, it's usually not long

before it starts to leak. I've always used one, and now my sister sews them for me... saves a fortune!

Best Yorkshire wishes!

Karen

I'm 5 years post-ileostomy. I had problems the first year with Bertie busting loose, especially while sleeping. My health nurse and I were really puzzled. One day, I called the maker of my appliance and told the customer service lady what was happening. She had me measure from the center of Bertie to the hole that was once my navel. When I did, she told me I had the wrong barrier ring. She overnighted the new ring. It worked. I carry a package of supplies in my purse, and I've had to use it several times. I've taken several long trips. I wear assurance underwear when I travel. That way, if Bertie breaks loose, the disposable underwear will help. I also carry a water bottle in the purse to clean her out good when we stop. My family and friends are a great support system. I also walk a lot on our local greenway. Toilets are not always available. I carry doggy bags with me to use in case I need to empty her along the way, along with some wipes. I only had to use them once.

Yes! The fear about the toilet not flushing is my biggest fear. 🙀

Try the Hollister Soft Convex.

Since I changed from a flat wafer, I haven't had a leak.

I also found early on that the instructions dictate placing your hand over each area for at least fifty seconds when the adhesive backing is removed. This warms the adhesive and makes for a very good seal. You can also place the bag under your arm for a minute prior to the removal of backing strips, this directly from Hollister.

Hollister will send samples.

Finally, do not use any products on the area that the pouch adheres to.

Hi Karen, can you describe how the belt “hooks” to your bag? It sounds like something I'd like to try making for myself as well.

Barbie, I used to panic at the sign of any leak. Usually wrong! My best friend always told me "Shit Happens" Before my ileo, I was very weak. U/C Crohns w/ C-Dif. Diapoopis 15 times a day. Woke up floating in my poop. Staggered to the bathroom, leaving a trail behind me. Fell against the sink & tore my hip flesh open. Blood on the right, poop on the left.

"Clowns to the left of me

Jokers to the right

Here I am, stuck in the middle OF POOP!"

Showered, Taped a 4x4 on my hip, fresh flange & bag, Rolled up the icky linen, used it to wipe up the trail & tossed it in the tub. Fell back asleep. Rolled onto my medical alert pendant and the Fire Dept was banging on my door(3am). Oy veh!

I survived and SO CAN YOU!

You pour water in the tank and make it flush, lol.

terrisajdel

…dang….another thing. I need to carry it in my purse!