Disaster and It Had to Happen Away from Home

Well, I'm 5 weeks post-op from my ileostomy and thought I'd nip into the office at work. I've had a week from hell as all around my stoma has become sore, bleeding, and irritated from my stool, so it wasn't a great start. So, I put on my brave face and went into work just to get a few things I needed to continue working from home. My boss was chatting to me, and we were having a brew as he is the only one who knows the full story, and confident me said, "Yeah, things are OK, and I'm getting there," when disaster struck! For the first time ever, I've had an appliance malfunction, and with my output being watery, boom! It leaked and leaked fast. I was devastated and just grabbed my keys and said, "I have to go," and fled. How can I go back to work and face them all?

Will I ever get it right and be normal?

So sorry this happened to you. I had the same issue 3-4 weeks after my surgery when I went back to work. I only had 40 hours left of FMLA. I decided to file for intermittent FMLA so that I can use an hour here and there. I suggest you take a day or two off from work and clean your skin around your stoma well. Then apply organic honey. Stay in bed with no bag. Collect the waste with a paper towel and dispose of it in the trash. Have some banana and peanut butter, rice, and boiled veggies. If the output is consistent, it is easy to be collected with the paper towel. When you put your bag back on for the night's sleep, make sure you apply the powder fructose around the stoma and place your stoma seal rings as close to your stoma as possible, and use a warm damp towel to press and make sure it seals the skin around it. Clean again in the morning and apply honey again and let it open with no bag. What you eat (the acidity) and how you install the bag are the most important issues you need to pay attention to. I use a 2-piece Tupperware that way I can see the seal around my stoma. Good luck to you. You made a big decision to have this surgery done. You are active and motivated. I am sure you will overcome any issue in your life related to this stoma.

Many thanks for your message and tips (honey, etc.). I've been given another week off work to get myself sorted, so I will try what you have said and hopefully see some improvement. To be without the bag would be great, even for a little while, but my output is so watery. I'm trying to get that thicker, so it's like a vicious circle, but I will definitely try.

Hi Taz. Here in Canada, we have gels and tablets to thicken our output. Do you have anything like that where you are? Just wanted to let you know that. Things have to start to get better. Please take care, and we can chat soon if you want. Pammer

There are 2 more things I forgot to mention:
1) If you use moisturizing soap or shower gel, make sure you clean the skin area just before where you place the seal and the patch, with the small alcohol cleaning pads. If there is any residue from the oils in the soap on your skin, your seal will leak.
2) Try to use solid honey that is like peanut butter; it is easier to apply and mold.
And I have a question. Have you changed your diet before this outpour of watery waste happened?

Living with Your Ostomy | Hollister

Buy SMELLEZE on here; just type that in. I too have an ileostomy and suffered terribly with leaks until I found this stuff. It's great.

Vasile, no, my diet is the same. It's awkward as I'm a veggie, but nothing different. Thanks, Pammer, I ended up in the hospital overnight for fluids (dehydrated), but now I have tablets to thicken my output and to try to slow my gut, and I go back to my surgeon in 2 weeks.

I am very sorry to hear this . I hope you will recover soon. Just let us know what was the issue if you find out. Take good care of yourself and I hope to chat you about fun things.

I had problems with leaks when I first got my ileo as well. I kept the Stomahesive powder under my wafer and would use the blow dryer to make sure I got a good seal. But, it would still leak on and off. It went on like that for about 6 months. But now, I don't get leaks. I don't know, maybe the skin got used to the wafer. Maybe I was producing too much oil in my skin. I just don't know, but it stopped. Hang in there though. It gets better, and always remember that your stoma saved your life. It's an inconvenient little cuss, but I'm alive.

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Hi Taz, I'm ten and I was out playing at the park when mine was watery and it exploded everywhere!!! My mum, the quick thinker, grabbed a glove and stuck it over my stoma and tied it on with paper tape. LOL, funny now but not then. Things to thicken my watery poo were: marshmallows, mum writing now, ok. Medicine called Loperamide Hydrochloride USP 2mg. When they say drink 2000mls, don't drink just water because it becomes like a flush and you get a gush straight away afterwards. Try milk drinks, electrolytes have lots of sodium to counter the output! Ensure is like an extra milk drink food you can get (complain, ensure). You are surprised to have a teaspoon of salt a day for the fast output of an ileostomy! Do not leave your stoma uncovered as we did, thinking it was good when burnt because it has so much acid that burns under the stoma (the piece we can't see on the outside under flaps of it). Use powder that stoma nurse can give you or rings and cover the burnt piece over top with ring then apply a warm to hotish bag; this will then stick. When we had trouble with Griffin's bags sticking, we warmed them under a hot water bottle so when he was ready to get out of the shower it was ready to go and preheated, works wonders!! If you are wondering why so much info, we have had this for the last 5 years!!! We are nearly pros at it now! I don't want to be rude, honey is good for some but then to shower to take off, it takes the skin with it, so back to square one if you know what I mean!!! Pineapple is real acid, worse than oranges as we have found out. His stoma was burnt so bad it was hospital time, looks like third-degree burns!! I will never forget that! I hope that helps Taz. Take care and any questions just ask!! Griffin loves your bike, massive fan!!! LOL
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Hiya, many thanks for the advice, Dragon and Dragon's Mum. I got straight on it and now take loperamide three times a day, and it's made a huge difference. It's still a learning stage and there are traumas that I'm sure I will laugh at eventually. I've also changed to the convex appliance and I've gained a bit more confidence. I even went out on my toy—I mean bike, lol. I took things easy and loved the feeling of old times.

Oh yeah, accidents happen! I now have to laugh because it's normal now after 5 years. I will tell you a funny story: Griffin sometimes sleeps on my tummy, which stops the poo from coming into the bag. Then usually his bag comes off or explodes everywhere in the bed. He is a very deep sleeper! Anyway, he was in the shower before breakfast. He was about to get out, and he sneezed, and poo from the stoma flew up my legs and all over me. What could I do but laugh? This is life that only ostomates would understand. My thought at the time was, thank goodness I wasn't kneeling to help put his bag on! Taz, the best thing to warm the bag before you get in the shower is a hot water bottle. Then it's ready and sticky hot, so it doesn't need to be held on too much either! With all the liquid you have, try milk, smoothie, electrolytes are the best, okay? They have so much sodium, which is what you need for lots of output! Cheers, Julie. How are your children with the bag?

I'm surprised I can relate to you because you have children too. One other thing I was going to recommend is these rings that are about the length from index finger to around your thumb, and that's the shape to stick to the outside of the wafer. We call them half moons because of the shape! They are Coloplast -- Elastic Tape -- Brava! I was wondering, do you have to pay for all your appliances that you get? Cheers, Julie

I know a place that if you do not have health insurance, you can get accessories and all types of ostomy supplies for very little money. It's called Osto Group, and their web address is www.ostogroup.org or Facebook is https://www.facebook.com/www.ostomysuppliestotheuninsured.org

I also use a convex ileo bag, plus spray adhesive, rings, and paste. I use stoma powder when skin is burned or irritated... works in 24 hours. Ileos are usually liquid... I've had mine since 2010... and yes, I have leaked when trying to go back to work... think about a chick in a skirt, heels/hose, and having to walk out in a fur jacket without my pantyhose... everyone at work (at least the ones that count) knew of my surgery, etc... feel free to ask for more info.

Thanks for all the great advice. Things are settling down lately and (touch wood) going forward.

Smelleze is a powder you put in your appliance. It is like Metamucil. It is made by Imtec and, as far as I'm concerned, it's the best thing I have tried. If you type in Smelleze, you will get the website.

Eat marshmallows, potato, pumpkin, white bread to soak up watery poo before it comes out. A peanut butter and banana sandwich is a real heavy energy hit for low sugar and sodium around 4 PM every day! Milk or anything but water makes it runny because you are just pushing the poo through by drinking water, but keep up fluids! If more poo is coming out of the bag than what you are drinking, then measure this for 3 days. If more poo than water, then you need a doctor because that's not good, okay! Sometimes things like this are not told! Get a special measure jug with measurements, then do a diary if you are worried! This is how you tell at the start of an ileostomy, too runny for the body or is it the right amount of everything! Hope this helps, I'm stuck in a chair just had surgery on my feet. Cheers, Julie

Hi Taz. I just read your post about 'output' and wanted to throw my 'two cents' in! I have had an ileostomy since 2000 and although I had a bit of fiddling with internal pouches and corrective ops (that didn't work!), I am a regular guy with a bag. All things considered, I get on pretty well. Just wanted to mention a couple of points which may help. Fluids are critical to you and need to be kept up. The risk is that by avoiding a big dehydration issue, we think everything is fine when in fact we are probably constantly below par because we aren't taking in enough water. I notice this on hot days when I force myself to take electrolytes. All of a sudden I am superhuman! The difference is amazing, so please make it part of your routine. The other thing I wanted to mention was food that reduces output and gives high levels of prolonged energy. Try butternut squash in any form, be it soup or as an alternative to potato. The other one that helps me is making a stew with plenty of pulses in it. I am no veggie, but have come to love all manner of beans and lentils. Hope this helps! Keep flying the flag for the single bagging bikers...we need all the support we can get! X