How do you handle public accidents?

Hello everyone! I welcome all feedback as I am new here and have been dealing with my ileostomy solo since Dec 2013. My surgeon dismissed me after 1 follow-up visit and I have never received WCON care. I was admitted to inpatient care Oct 2013 for gastrointestinal bleeding and after 20 plus units of blood, 8 procedures to stop the bleeding, and more invasive tests than I could keep count of...finally, after telling me to have my family arrange for my impending death, a colorectal surgeon was finally brought in to save me.

Of course, there is much more to my story, but let's consider this my condensed introduction.

What I want to know is how do you handle accidents? Mentally, I don't care about other people and their reaction...this is due to the arrogant attitudes displayed by my fellow Americans. (One woman even had the audacity to say I shouldn't be allowed out in public.) I mean, what actions do you take?

I once had my seatbelt rip off my clamp. When I stood up, waste was splattering on my feet. It was everywhere. I just wiped off as quickly as possible, put a towel in my seat, and drove straight home. I felt terrible leaving my waste on the parking lot.

My frequently occurring issue is when seeds, perhaps from tomatoes, cause small punctures in my bag causing it to slowly leak. This happens several times a week. I eat a lot of fruit and vegetables.

I look forward to reading your responses.

Hi little I, I've had my ileo for 30 years. And I have had a couple incidents in that time, usually due to the clip breaking and the contents running down my leg. I usually just go in the nearest bathroom and clean up best I can and then go home and shower.

Hello, I received my ileostomy in June 2013. I've only had one episode away from home where poop ended up running down my leg. I was out rock climbing with a couple of guys at a nearby site. As we were heading back to our vehicles, I was carrying my rope in such a way that it pried the closure clip off the bottom of my bag. I walked ahead faster when I felt the moisture on my leg. Luckily I had driven to the site by myself. When I got to my truck, I went around to the side and pretended to pee, yelling out my goodbyes. Now, no matter where I'm going, I've been taking a small bag containing baby wipes and a fresh appliance. Maybe I should include sweatpants or something.

I haven't had any problems with punctures. I do occasionally have problems with particular edges of the appliance base separating from my skin. I use a bit of Gorilla Tape to keep it from getting worse. Works great! Maybe you could use it to cover the puncture holes.

My biggest problem is having to "burp" my bag when in public. Having to find a downwind, out of sight place can be difficult.

Scott

Hi Littleskinnymini71,

My thoughts are just to be as prepared as you can with supplies to get yourself back together. I never had a puncture, and changed to Velcro years ago, but I have had my share of blow-outs or slow leaks at the flange.

I have in the past year started using Sure Seal rings which can hold back the accident for a bit to give you time to get somewhere and change if you have a leak at the flange.

Here is a link to the product, http://www.alpglobal.com/Sure-Seal-TM-Rings.html

I don't know what actions I would take if someone was that rude to me but I hope I would bite my tongue and say a prayer for them, because we never know what we will have to deal with in the future.

Hello LSM71, hope you're well.

I've had my colostomy for 5 months and am forever having accidents, getting used to it I suppose but hey, shit happens.... I'm not going to let ANYTHING get me down.... Been through too much to be upset by a little bit of poo......

Hi Skinny,

As the norm, you got a lot of good help. But you said you didn't have a WOCN or get any other professional help so I'm adding what I was told. Do not eat anything with skins or seeds; they don't digest and can cause problems. I never thought they'd be able to poke holes in the bag but you learn something new every day. That's what I was told and I don't eat any of those things, but I sure do miss them. Maybe you can limit your tomato intake to one time a week and prepare yourself for the problem because you know it happens? Unless there is such a thing as seedless tomato?

Welcome to the site and hope you find something that works.

Z

Hi Skinny,

Luckily I haven't had any real issues as far as public accidents, not saying that I won't, but haven't as of yet and it has been coming up 5 years of having my Ileostomy. Now I did have a temporary Colostomy before my permanent Ileo and right after I was able to go back to work, I did have an accident with poo. I had it everywhere trailing to the bathroom at the work site. My co-workers were very accommodating and offering to help me clean up. As I thanked them, I told them not to worry and continue to work, I'll clean my mess. As far as with my Ileostomy, I've had only one accident and it was after dinner with my wife. I didn't have the appliance formed too well to the stoma. Lesson learned on that one. Told my wife to pay for dinner as I went outside to the car. Luckily, all the poo built up under the flange and into my underwear and pants, so it was a relief as it didn't make it out into the public view. Now I also eat just about everything I want to. I use the mantra of chew, chew, chew and drink plenty of fluids. I use a one-piece appliance. Never have thought of anything piercing the bag, Hmmmm, I eat nuts all the time, even had an apple peeled of course. Grapes I just take the skin off of them. Oranges, I've tried one or two and only after I stripped the outer skin off the edge itself. I do love my salad, the only thing I try not to indulge in is onions which I do love but they don't sit well at all with me, lots of gas afterwards. I have had my pouch be so tight from gas it's almost a snare drum.

First, stop eating tomatoes and things with seeds and watch carefully what you do eat. I was told after my ileostomy I could eat anything, and no way would I chance eating things that used to cause me so much pain.

Second of all, get an appliance that is a good one that seals well (place your hand on the seal after putting it on which helps it stay). I use a one-piece Hollister 8246 (premium bag), and it is a great one. I also, whenever we go out, put on a Depend just in case! For the longest time before I healed, I had a Kohl's bag with undies, gauze, bag, pants, etc.--just in case).

Go to the ostomy site and do as much reading as you can, and call your local hospital to have them send you a pamphlet and any printed material to help you care for yourself to prevent accidents. Also, empty your bag when it gets relatively full to avoid an accident.

I hope this helps, and feel free to check out this site for other pointers. And if you are working, I would wear a Depend just in case. Better to be safe than sorry.

Good luck!

The first year is the toughest time with an ostomy because you are adjusting to having one and you do not really know how others view you. Most people you meet do not know you have an ostomy. I have had an ileostomy for 37 years and I remember being told about diet. My E.T. (before WOCNs) explained diet to me in great detail - basically I eat everything with some things in moderation.

If you are sure seeds caused your pouch to puncture then I would look for another ostomy appliance. You have many choices in the US: Hollister, ConvaTec, Coloplast, Nu-Hope, Cymed, Marlen, and a few others.

You really need to be seen by a WOCN. I assume there was a WOCN in the hospital where you had surgery and she/he taught you how to manage your appliance.

Suggest you find the nearest ostomy support group and attend their meetings. They usually have at least one WOCN at the meetings and the WOCNs frequently speak at the support group meetings. Click on Support Groups after going to www.ostomy.org and find the support group nearest to where you live.

It is a learning process. Control your ostomy and do not let it control you.

Hello Skinny,

As you said, it was an accident - not a planned or programmed one! One can only be prepared to avoid it. There are many good info given by others.

Well, it is indeed very embarrassing when the bag opens and spills the content of your stoma bag - I felt ashamed when this happened in a departmental store; luckily I had just checked out and there weren't anyone around to notice it. Besides, me having urostomy, it was only the poo.. still very embarrassing..

Some people are understanding; yet some are very rude and crude too.

I had experienced worse situations in the US for my being as Indian; a single mother flirting with other guys in the bus almost screamed at me for trying to hold her small kid who was about to fall! I shuddered - so much for human consideration.

Burnt out cannot be burnt by fire again! Only you can know what you've been through.. Learn to live devoid of others' help and consideration.

David - India

Hello,

When I first got back to work during a sales meeting with 30 people in a circle of chairs, when I stood up, my ostomy bag fell off. I just sat down and was trying to just keep myself from screaming. It was a lesson in humility. What I learned is that most people are compassionate and understanding. The hardest part is learning that it doesn't define you. You just have to do your best to prevent it from happening and get as much as you can from people who have dealt with it for longer periods.

My suggestion is to find a support group in your area and call a hospital that has an ET Nurse to talk to or make an appointment. Also, you can call your medical supply company and explain your concerns. They can send you samples.

I plan on joining once I get back to work full time. We tend to forget that we are harder on ourselves. Most good men and women really don't care about our obstacles that we have to deal with. If there is a good-natured person, they're going to focus on you as a person and not your illness. If they can't do that, they're missing out on somebody who has a lot to offer. It's taking me awhile to get my confidence back, but I happen to believe that I'm going to be myself. I enjoy living, giving, laughing, and having fun. And learning how to get past the disappointing days and focus on the good days. All the best to you. It really doesn't matter in a hundred years who's going to care. Live your life, enjoy what you have. Find the way to overcome the obstacles. It's not easy, it takes a strong person. For 17 years, I'm still learning to overcome the bad days. One day, I'll find the right person that understands that I can be myself with.

I

Hello,

When I first got back to work during a sales meeting with 30 people in a circle of chairs, when I stood up, my ostomy bag fell off. I just sat down and was trying to just keep myself from screaming. It was a lesson in humility. What I learned is that most people are compassionate and understanding. The hardest part is learning that it doesn't define you. You just have to do your best to prevent it from happening and get as much as you can from people who have dealt with it for longer periods.

My suggestion is to find a support group in your area and call a hospital that has an ET Nurse to talk to or make an appointment. Also, you can call your medical supply company and explain your concerns. They can send you samples.

I plan on joining once I get back to work full time. We tend to forget that we are harder on ourselves. Most good men and women really don't care about our obstacles that we have to deal with. If there is a good-natured person, they're going to focus on you as a person and not your illness. If they can't do that, they're missing out on somebody who has a lot to offer. It's taking me awhile to get my confidence back, but I happen to believe that I'm going to be myself. I enjoy living, giving, laughing, and having fun. And learning how to get past the disappointing days and focus on the good days. All the best to you. It really doesn't matter in a hundred years who's going to care. Live your life, enjoy what you have. Find the way to overcome the obstacles. It's not easy, it takes a strong person. For 17 years, I'm still learning to overcome the bad days. One day, I'll find the right person that understands that I can be myself and understand that we have the desire to live life to the fullest. And if we have a bag break, we deal with it and move on. It's not easy...but you can get upset and stay home. Or plan ahead and be the person who has dreams and goals. Best of luck....

I

Hello,

When I first got back to work during a sales meeting with 30 people in a circle of chairs, when I stood up, my ostomy bag broke. After that, I learned that I had more people being supportive and that having an ileostomy doesn't defy who I am. I still have goals and dreams. And I hope one day I meet a person that I can share my life with and be supportive of her needs. Most people are very understanding. We tend to be harder on ourselves. In time, you will learn that you're able to handle the bad days and focus on the good days and the people around you that love you. Being from Chicago, most people live out of state. For some reason, we feel more comfortable being with somebody who shares our problems. It really shouldn't matter, but we have to realize it takes time to get her confidence back. But you will get it back, but you have to work at it. All the best,

Fredric

Thank you everyone! I truly appreciate the feedback. I guess I'm extremely hard on myself. I cannot work for approximately 3 more years due to other health issues as well...lovely lupus.

I don't have access to a doctor or WCON nurse...not even inpatient after surgery. I was simply given a few supplies and sent home 8 days later. Mind you, I had been there 3 months bleeding out. My husband walked out on me due to mounting medical bills which he said he did not sign up for. This, along with my bag, has caused significant self-esteem problems. I'm actually a very loving, caring, loyal, and multifaceted person with a lot to offer.

I'm also raising my special needs grandson. He is the only reason I keep going these days. He is a pure delight to behold. So much character and happiness in a child who should be angry but he isn't. I got custody when he was 8 weeks old...he is now 7.

Anyway, I'm panicked because I keep having accidents way too often and the public can catch me off guard and crush my gentle spirit at times. I'm afraid if I develop a callous to these people I will become like them. So I trudge on.

I keep an active eye on my bag contents and seeds always come through undigested as do most foods due to poor motility and malabsorption problems...runs in my family. The seeds do poke tiny holes, usually grape-sized tomatoes, but I am craving them because of my malabsorption.

I've pretty much become a recluse. I get out a lot to go to the beach but I don't have many chances to socialize except at the store.

I greatly admire each of you for sharing and being strong.

Thank you for the willingness to share.

Love, LSM

Hi LittleSkinnymini71, you came to the right place to post, look for suggestions, and gather information. Some people can be very cold with their responses and looks. I've experienced it myself, and I use their rudeness as a life lesson for me. I do my best to be understanding and gentle on myself and other people. Kindness goes a long way, and I don't want to be like the rude ones. I was thinking about the seed problem puncturing your pouch. I also crave tomatoes often. I drink V8 juice or tomato juice when the craving begins. It really helps me. I also take out the seeds in most of the veggies and fruits I eat to avoid problems. The winter tomatoes are harder for me to peel - summer veggies and fruits work much better. I also do not eat hard apple skins, cooked potato skins, or acorn/butternut squash skins. Softer cooked veggie skins I will eat, but I chew them very well. Also, I use a pouch with Velcro, not a clip. I have heard many stories about the clip coming undone or loose. Again, I do not know about the comfort of the clip or using it, but maybe a Velcro or snap pouch would be a positive. I am counting the days until the warmer weather. Winter is not my favorite... too cold. Take care and have a nice weekend. LH

Went turkey hunting the other day. First time I've been in the woods since I spent 72 days at Shands Hospital and eight weeks in physical rehab to learn how to walk again. Well, I came home and my wife asked, "Did I get anything?" I said, "I got a nice turkey and a pants full of poop." I do not know if there are any hunters on this forum, but when you are hunting and you hear a turkey gobble, you cannot just leave. I immediately realized that I was there for the count. And I felt the sensation of poop coming out of my side. I stuck it out and got the turkey. Went back to the truck and stuffed paper towel there to keep everything in place. Besides the poop, it was a great day.

Many people do not know this, but turkeys are very smart and a challenge to catch. Congratulations! ;LH