Lessons from a Long-Time Ostomate

Back in the early 1980s when I was a new ostomate, I didn't have the benefit of the internet and Meet an Ostomate to learn and share ideas and concerns. But we did have a small group who met in Manhattan occasionally, and I remember meeting a man who told me that he had his ileostomy for 30 years. I was amazed not only that he had it that long, but that he was still around to talk about it. I had no idea you could live that long with such a thing. Who knew? It's now 32 years later and, much to my surprise and delight, I'm still here! I've learned a lot by trial and error and more recently from the wonderful people on this site. Here's a list of some of the things I've learned. Hopefully, you will find some of these ideas helpful and perhaps you can add a few of your own.

1) First and foremost, if you eat like a horse, you sh** like a horse!

2) Keep an extra clip in your wallet or pocketbook in case you lose yours or it breaks. In an emergency, a binder clip that you use to hold papers together will work just as well.

3) Restaurants usually don't like you to use their bathrooms unless you're eating there. I've found that hotel lobbies and bookstores are usually good places to find a clean bathroom in NYC.

4) It's your scheduled day to change your appliance, but you're a little tired or just not in the mood to change it today. "I can get another day out of it. I'll change it tomorrow," you say to yourself. Not a good idea. In my experience, I usually regret that choice.

5) Make sure not to let your supplies run too low because you can't always count on a quick delivery or your supplier may not have everything in stock. Also, double-check your delivery when it arrives. 1 3/4" flanges + 2" pouches = Big Problem.

6) Lighting a match or two and then blowing it out right away is a pretty effective and easy way to cover the odor after you've emptied your appliance when you're out. At home, a scented candle in the bathroom works great.

7) It's 3:30 in the morning and you think you might have to go to the bathroom to empty your appliance. My advice is to just get up and do it and don't think about it. If you start trying to evaluate whether or not you can make it until morning, you'll never get back to sleep. I also keep a night light in the bathroom so I don't have to turn on the really bright overhead lights.


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Unless you want the walls of your bathroom to look like a Jackson Pollock painting, never, under any circumstances, attempt to change your appliance immediately after drinking two cups of coffee and eating a slice of cheesecake.

9) If you think you might be getting some blockage or are already blocked, a few gulps of mineral oil may help the blockage slide through. Fortunately, I can't remember the last time I became blocked, knock wood. (You'll have to take my word on this. I'm knocking a piece of wood as I type this).

10) I think that after blockage, the next worst problem we might have to deal with is a stomach virus. It's happened to me a few times and the fluids just poured out of my body and into my appliance like an open faucet. It's important to replenish fluids and electrolytes, and my favorite drink for this is Gatorade. Also, my brother, who is a physician, recommended some easy-to-digest foods that will help to thicken the output once you're ready to eat again. He calls it the BRAT Diet, which makes it easy to remember...bananas, rice, applesauce, and toast. The applesauce should be plain with no cinnamon or sugar.

11) No, I'm not dying from internal bleeding. That's just the glass of Hawaiian Punch I drank with my lunch two hours ago, which is now filling up my appliance with red liquid and scaring the hell out of me. I don't know if Hawaiian Punch is an international drink, but it's popular here in the U.S. It's a bright red fruit drink that seems to come out the same color it went in.

12) I don't use a belt, but I keep one in my desk drawer, and it's proven to be helpful more than once, particularly on hot, humid days when my appliance became unexpectedly loose. It will hold the appliance well enough to get home safely to change it.

13) When it comes to having sex with a new partner (as I recall - I'm married now (LOL)), you will probably make a bigger deal about it than your partner. Confidence, a positive attitude, and a sense of humor go a long way.

14) And finally, always remember that we don't have our ostomies because we chose it. It was (definitely) not elective surgery, but it did save our lives. Rather than sit there and say, "Why me?," we should say, "Thank you for another chance," and live our lives to the fullest. It's not how many times you get knocked down that's important. It's how many times you get up.

Cheers for the advice, PJT, still laughing at number 1, couldn't figure out why I was putting on weight! Ha ha.

great read....funny too, thanks!

I too used to sit and boo-hoo until I found this site and learned so much and saw that I was just a drip in the bucket and really did not have anything to wallow about.

Thanks everyone. I'm glad you enjoyed it and I hope it was not only helpful, but that it made you laugh as well. I forgot to include one item however, and that his how I've learned to appreciate the little things in life. A nice day, a child's laugh, home made tomato sauce and pasta on Sunday. These are the little things that truly make me happy and which I will never tire of.



Paul

Words of Encouragement from Ostomy Advocates I Hollister

thank you so much! loved it!

Interesting read, PJT.
Very informative and very funny... Point number 11 reminded me of when I eat beetroot!
Tastes really nice but is pretty scary when it emerges out the other end
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Bless you—you speak the truths we always try to speak when we come across a newbie. This was like losing a leg or a breast—it wasn't something we elected to do to ourselves and it's nothing to be ashamed of. I'm alive and that's a wonder I really appreciate. I'm in considerably less pain than I was before the ostomies and medication does keep it under control. I was housebound for close to two years and I'm not now. The main things I tell those dealing with new ostomies is it does get better and keep it dry.

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I have not used a bag with a clamp in the past 5 years. They make great bags now that are Velcro and work great. I walk 30 miles per week and lift weights 3 days a week and have never had one fail me yet. I have used Convatec and now use Sensura 2-piece by Coloplast. Both companies make very good bags in my opinion. Coloplast works best for me.

Oh, before moving to Stockton, CA, I lived in Manhattan, NYC for 10 years. I did not have an ostomy at that time, but I have one now and travel to New York for pizza, bagels, and to see my Yanks. For those traveling to New York in the Times Square area, the following places have clean restrooms: Times Sq Tourist Information Booth, Broadway 45 St close to the old Virgin Record store and McDonald's. Port Authority Bus Terminal, this one surprised me, very clean, but use the handicap stall for more room. Also, Macy's department store on 34 St, very clean, use the bigger stall. I hope this helps people traveling to the greatest city in the world. If not for my 4 beautiful grandchildren in Stockton, I would still be living there. One closing thought, there is a company called ostomysecrets.com. They make wonderful products. I use their ostomy body wrap; it is a wrap with a kangaroo type of pouch. It can be worn over or under your briefs or panties and holds your pouch in place, makes it very stable, wears like a girdle. I wear mine over my briefs; my bag has no contact with my skin, keeps my skin and pouch dry. With all the bad products being sold, this one stands out as one of the good ones. As far as odor control, do not buy those expensive products. I am told baking soda diluted with H2O or a little mouthwash works just as well, although I have not tried either as my stuff does not smell as bad as my 2-year-old granddaughter and one-year-old grandson, neither of which seem to be bothered by their odor. God bless everyone.

Hi Paul,

This was a great post. I have had my ostomy for 47 years and still found this helpful and amusing. I never knew about the mineral oil until I heard about it on this site. Live and learn... and laugh as well.

Marsha

Wow, loved the list. I really enjoyed the part about a second chance. Been having a why me day and it was just what I needed to read.

Thanks PJT.  That was a good read!  I also have been having some why me? time this weekend.  I needed that reminder!

PJT -



Thank you.  Loved the Jackson Pollock reference.  It reminded me of my newbie days of NEVER leaving the bathroom without having to clean up some mess somewhere.  Even now, with Walter the Wenis just passing his second birthday (no party), it's often not until the morning that I see what has to be cleaned after shlepping to the bathroom in my sleep a couple of times.  At least these days the mess doesn't get beyond the toilet (usually).

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I agree it's so important to remember that what many of us think of as one of the most traumatic thing that ever happened to us was the thing that saved our lives.  Having had my share of battles, as we all have, I learned a long time ago that the answer to "Why me?" is "Why not me?"



Thank you all for being here.



Laurie

Wonderful post. Take care P.

Thank you so much, lots of tips I know will help me, take care xxx