Living Bag-Free: My 8-Year Journey with an Ostomy - Success Stories Wanted!

Hi fellow baggies, I have had my ostomy/stoma now for eight years and the 'bags/pouches' drove me crazy and very irritable and very short-tempered. I developed my own "bag-free system" and my quality of life has improved by 300% and again am a happy person who has finally accepted my new lifestyle of living and loving with an ostomy. I am more confident now with my "bag-free" system than relying on the stoma bag to do its job! I feel like a new person and have regular bowel movements once a day like clockwork in the mornings.

Would be good to hear any other success stories.

Hi Wildlife.  There must be at least a few folks wondering what you're talking about and I don't know why you're not getting any questions.  So, I'll ask you, what's your secret?

Respectfully,

Mike

Hi iMacG5, I was also surprised by the lack of interest after my ostomy became part of my active lifestyle. I tried my different "bags pouches" and they drove me crazy (uncomfortable, messy, leaking problems, always had to carry spares, disposal of old "bags" etc. etc. how to manage intimacy).

After sleepless nights, I came up with the following workable procedure I have now used for 7 years very successfully with life quality improving by 300.

1) Make a body band from double stretch lycra (similar material to that of women's stretch sports bras). I have 14 bands which last a week (30 cm wide).

2) Cut absorbing bed sheet pads into 25 cm squares.

3) Buy a pack of baby wipes (I always have a couple of wipes in my pocket); it's the only "spares" I carry.

4) Buy a Medac 'stretchable' back support (mine has now lasted 7 years) which I wear when active.

5) I have trained my bowel movements to 1 (once) a day (first thing in the morning I "milk" my stoma clean and I am good for 24 hours).

6) Point 5 involves healthy selective eating and drinking — it is really worth the effort for being bag/pouch free. Life is good.

The replacement of bands is dependent on body odor and smell (I change mine every 2/3 days).

My daily procedure in the morning is to "milk" the stoma clean, take off bands and throw away pads, shower and wash my stoma (it's so much easier without the bag), dry myself, put on lycra body bands, lay some baby wipes on the absorbing pad, use a few squares of toilet paper, cover this over the ostomy/stoma, then use the lycra band to hold it in place, use back support if required (I use one because I have an ostomy hernia), and the back support also assists me when playing golf and hiking. With the above lycra system (I use the beige color), intimacy is a pleasure. If during the day I feel the need to have a No 2, I just stand and "milk" my stoma over the toilet, and when complete, recover with pad and lycra body band.

Try it! You will be surprised with the improvement in your confidence and quality of life — and the savings!

How do you milk your stoma? Mine seems to be going nonstop all day and night. It drives me crazy. My doctor says I can use an enema to clean it out once in the morning and not have any problems all day. I would give anything to have one bowel movement a day like before the ostomy. Another question I have for you is, I seem to have diarrhea often. I can't figure out what it's from? I eat the same things as my husband and he never has it. It's driving me crazy!!!

Hi Aileen, I am very fortunate in that I have "trained" my bowel movements to occur once, maximum twice, a day. I know my body well and can "feel the need" to go to the toilet. With my above procedure, I just stand over the toilet and lower my hands and remove the 'Pad" slowly, letting the poo just drop into the toilet bowl. I then squeeze around the stoma to get everything out, then put a clean piece of toilet paper over the stoma, replace the pad, and secure it with bands. Then I am on my way again (total time max 2 minutes). So easy, clean, and no spares required --- I do carry a few wet wipes in my pocket just in case. Find out the cause of the diarrhea, with the bag or my system there will always be a messy situation.

I have cut out white bread (wheat products) totally, eat mainly chicken and fish, with lots of salads or vegetables, little spices but no gravies or sauces, and drink a glass (or two) of red wine with supper in the evenings. (I do not smoke and I walk for 60 minutes x 5 days a week)

If you don't understand all of the SA slang, just ask and good luck---- life is great if under your control!!!!

Mark

Mark, then Aileen just gave me a bunch of stuff to think about.  I thought ileostomies could not be irrigated to regulate output but, relative to you guys, I know nearly nothing!  I think WL's messages could be a blessing for lots of folks, including Aileen.  Sometimes I get completely confused by what interests or doesn't interest folks like us but, for me, the difference between changing a bag every day or two or three and not wearing one at all is like the difference between hitting out of bounds as opposed to 250 down the middle.  I think for bowlers that would be like a gutter ball as opposed to a strike.

I hope we continue discussing this and get to learn some stuff to make our stomatic situations more bearable.  (First time I used that word)

Thanks Mark and Aileen,

Mike

Hi Mike, you nailed it on the head! I am also a very keen golfer (playing this afternoon) - a pee and a check on milking the stoma before I play and I am good for walking 18 holes and then hit the 19th for a glass or two of wine, without any fears or worries. Ostomies are a mindset if you watch what you eat, take control of your body and life is a breeze.

Have a great day and feel free to ask any questions.

Hi Mark, I saw your post and was intrigued to find out more about your system. I am three years into this lifestyle and would love to shed the bag. Currently, I have no control over when my stoma lets loose. Although I do have times during the day where there is no output. Does the body band keep the stoma from being active? I agree with watching the diet and I too enjoy drinking wine. Any more insight you can provide would be appreciated. Stay well. Penguins7

I think this type of technique would only apply to those who have a sigmoid stoma...

I think I have irrigation down pat and could probably go 3 days if I wanted to, but usually do an irrigation every 2 days. I eat anything and so far so good. But

I am not sure if I would go out without wearing a very small bag, even if I did not think I needed it, as you never know... food poisoning... etc... our bowels react to what we eat... and accidents can happen... and they usually do at the wrong place... lol...

But it is true you can train your body to respond to irrigation, if you are a candidate, and in time you will know if you have eliminated all that has to be eliminated...

I wonder about odor also without having a bag and filter... but if it works for you, great...

My stoma is a result of a colostomy and is located on the left side of my belly button. Going without a bag takes confidence and a changed health and eating lifestyle - I promise you one thing - it's definitely worth the effort. You get your life back and don't have to worry about bags/pouches and all the "crap" that goes with it. Why should you feel different? Everybody passes wind or "farts". I would seriously recommend trying the bagless system if you're really interested in an improved lifestyle (yes, accidents do happen - but the bagless system is no worse than a leaking or overfull bag!).

Live your life and don't worry too much about other people - they're not in your shoes

That is really great that you are able to go bagless and have worked out a system to control your BMs. I don't think this technique would be successful for ileostomates because our colon is gone and our output is mush at best, always depending upon what we eat throughout the day. I, like penguins, have quiet times during the day but other times my stoma, named Stanley, is percolating away. I have been told, as the years go on, a small bowel will begin to act like a colon to some extent. We will see. In order to lessen odors, I change my filter pouch every day. It keeps it fresh. I also use a pouch deodorant made for ostomies. Thank you again for your suggestion. Maybe one has an idea for pouchless besides surgery for ileos..... LH

Hi Ladyhope, thanks for clearing that up - Yes, your Stanley (has a mind of its own); my colostomy is at the end of the Big Colon. I had cancer in the rectum and subsequently had no "muscle" control there. The permanent stoma (named naughty Freddie) - yes, my "pooh" is fully developed and ready for disposal - so I have therefore better control - which is also dependent on healthy selective eating - now a way of life.

Good luck on the speed of the colon "conversion" - Mark

Hey Mark, I think every ostomate should have a chance to read your stuff.  We understand ileostomies are different but Aileen's doctor and LH mention a couple things worth looking at.  Whether it's cancer or other crap that caused us to become ostomates, I sometimes think we're just so relieved to be alive, out of pain for the most part and enjoying some quality of life that we don't investigate other opportunities.  I would love to hear from a WOCN or two and other folks who might have been somewhat adventurous.  

In the meantime, perhaps you might share some other info like precisely where your stoma is relative to the belly button and it's size.  Obviously we can't milk an inverted one but there might be other possibilities.

Thanks so much for starting this discussion and try to hit 'em straight.  If not, still enjoy the 19th.

Mike

Hi Mike, thanks, I will post photos this weekend. My stoma (when facing ahead) is a bulging "melon" on the left of my belly button. When I wear the back support and dress, you would not notice anything different. The stoma is firmly in place behind the "strong" comfortable back support.

Cheers - golf later today again -- if on Facebook, check out my profile.

Hi LH, your e-mail cleared things up for me due to the fact ileostomies are like a leaking faucet. I hope someday that they come up with something better that is built inside instead of the exterior pouch. Though I did look into the BCIR but it seems risky at this point. Penguins7

Hi Penguins7, yes, I was a bit confused myself. We can't go without a pouch for long periods of time because our plumbing has been really modified. I looked into the BCIR as well but am not ready for another major surgery...especially if the newly created pouch leaks or develops pouchitis.... I wish the medical community could grow a new colon in a lab and replace what was taken out. Then we would have little risk of rejection, it would be our own. Then we could irrigate and go a day without changing anything. I like the comparison to the leaky faucet...LOL Take care. LH

I've had my stoma since 2013. I irrigate every day and have been bag free for 1 1/2 years. The freedom I get without a bag is awesome.

LadyHope suggests growing a colon in a lab.  Good idea but maybe an alternative is to transplant a healthy colon from a donor.  It's done with other body parts, why not colons?  Of course I know nothing about this possibility.

Mike

This topic, for obvious reasons, caught my attention. So happy WAB and Lady Hope pointed out there are different types of ostomies and not all should or can do what someone else can. Please, always check with your doctor or do more research online before you try anything other than what has been working for you. Very interesting option though, and so happy for you that you found something that works! I have had my colostomy for 3 years now, but would not try your method because I still have many days I do not know I have pooped until I have to pee and see it happened. When I am asleep seems to be the most active time for me too. For me, I think this method would be the cause of me cussing more than I normally do. :) Plus, the times I have tried to wear something stretchy over my stoma to keep it less noticeable, I have had enough discomfort from the stoma I cannot wear it for long.

Little side note to Lady Hope and Mike - I asked the surgeon that did my stoma why they could not transplant from a donor. He told me it's because they have not figured out how to deal with all the other parts of the body that are connected to colon. The one I remember for sure is he mentioned there are many nerve issues they cannot figure out. He said they could feasibly do a transplant but there would still be issues of feeling when something needed to be eliminated from the bowel, natural movement, etc. etc. All too medical for me to totally understand. BUT the reason I bring this up is because it seems they are trying to find a way to do it. It probably will not be in our lifetime though.

Try to keep smiling !

Hi Zywie, I heard something very similar regarding a bowel transplant. The transplant surgery is very difficult because of the nerves that must respond to the signals from the brain. Too much medical for me also. I must add though, the Mayo Clinic is doing some sort of stomach transplant or stomach revision. A distant friend of the family has had GI issues for 20 plus years. Her stomach apparently does not empty well causing pain and sepsis. She is a candidate for this new surgery at the Mayo Clinic. I do not have the specifics but from what I heard through family, the docs will be doing some sort of transplant. Of course, I was curious about the surgery and read that stomachs can be removed and the duodenum begins to act like a stomach. I never knew this....science is coming up with new ways to treat many GI diseases. I am always hopeful. Have a nice weekend. LH

Wait. Who wants another colon? I was happy to get rid of that smelly old thing! LOL

I would take a "butt" transplant! I heard the same thing about all the nerves, blood supply, etc. Such a simple organ and yet so complicated.

They can do transplants for the eyes, hands, hearts, lungs, kidneys, liver, hair and yet the simple little "butt" still is a mystery!

I have always said, "Take care of your butt, and your butt will take care of you." SIDE NOTE: I said this mostly when I had a "butt." Now we take care of the "bag"!