Ostomies: fact or fiction? (changed from colostomies)

[PainInTheAss]

I have a permanent colonostomy as of April 9th.

I'm irrigating most mornings. Had a couple "Code Brown" moments I'll laugh about eventually. I take about 15 - 20 mins. to set-up and deal with poop and brown liquid squirting through the sleeve into the toilet. All the while telling my curious dog, "It all smells like shit." Then 30 - 45 mins. to sit in front of the TV and 'puter waiting for late returns. Another 5 - 10 mins to clean up and put on a regular bag, and I'm done with stoma care for the day. I've re-used the same empty, clean bag for three days.

Irrigation causes me anxiety, depression, and exhaustion (I have pre-existing clinical depression). As I get the techniques down, it is getting better.

When will the dull pain and low grade nausea go away? When I quit smoking again?

Did you talk to your surgeon about irrigating? That seems really soon after surgery to be trying this from what I understood if it was only about a month ago. I was told to wait several months so the stoma incision had time to completely heal.

I waited until I got the green light from my surgeon and I had the process of wearing/changing a bag down. It's quite different to have a bag while recovering from surgery than when you are more active and out and about, I found. My drainable bags would last a week when I was just lying in bed. Not anymore.

[Rasputin]

My surgeon encouraged me to start irrigating right away.

[Annemiek]

I had drainable bags in hospital because the nurses didn't have time to help me fully change the bags. I hated having to slosh out the poop and then not put on something clean.. Not changing for a week seems so gross to me Even just lying in bed.

Doesn't irrigating cost a lot of time in the morning? ( having to choose between that and sleeping half an hour extra...) tough choice

Annemiek

[Jachut]

Well, Annie, I tend to agree. I am a die hard naked shower in the morning followed by clean bag and then another clean bag after I've pooped happy one piece closed bag user. But obviously, THAT' just proves that even those of us who have ostomies are just as capable of bias and misinformation about things. Two piece systems must work and stay clean and not smell or people wouldnt use them!

As to irrigating. I read the other day about someone saying oh, it takes 20 minutes to set up and then 40 or 50 minutes in the bathroom and then I sit around for another hour waiting for late returns and then I don't have to worry about it for another 24 hours - like that's a good thing So what's that, at least 2 hours? I chose to have a colostomy because having a poop via a small enema was taking me an hour a day. That was an intolerable time commitment for me. Now I spend, oh, 2 minutes on my ostomy morning and night. I cannot for the life of me understand why irrigating is worth it, but again, I'm a regular once a day pooper. It happens every late afternoon and then I change when its finished. I get 24 hours free anyway - and if I eat a lot of chocolate I get diarrhoea and then I get two days free!!! Sometimes there's a bit more overnight but not much. So again, my views are shaped by assumptions that probably pertain only to me.

[LB10]

Irrigating has made my ostomy almost a non issue. My output was in no way predictable. If it was I would probably feel different. It doesn't take that long. 45 min to an hour. That's all. I then take a naked shower and where a one piece stoma cap. Very low profile and always clean. This has been a wonderful thing for my state of mind. I have control back. I don't have to think about it,but once a day. It may not be for everyone. We are all different but it is definitely an option worth exploring. The UOAA website has really great information if anyone is interested.

[Annemiek]

I had an image of an one piece bag floating around my belly for a week
I love how you guys talk about " naked" showering, like we're sort of extra naked with a ostomy which in some ways we are ofcourse

[PainInTheAss]

Well, Annie, I tend to agree. I am a die hard naked shower in the morning followed by clean bag and then another clean bag after I've pooped happy one piece closed bag user. But obviously, THAT' just proves that even those of us who have ostomies are just as capable of bias and misinformation about things. Two piece systems must work and stay clean and not smell or people wouldnt use them!

As to irrigating. I read the other day about someone saying oh, it takes 20 minutes to set up and then 40 or 50 minutes in the bathroom and then I sit around for another hour waiting for late returns and then I don't have to worry about it for another 24 hours - like that's a good thing So what's that, at least 2 hours? I chose to have a colostomy because having a poop via a small enema was taking me an hour a day. That was an intolerable time commitment for me. Now I spend, oh, 2 minutes on my ostomy morning and night. I cannot for the life of me understand why irrigating is worth it, but again, I'm a regular once a day pooper. It happens every late afternoon and then I change when its finished. I get 24 hours free anyway - and if I eat a lot of chocolate I get diarrhoea and then I get two days free!!! Sometimes there's a bit more overnight but not much. So again, my views are shaped by assumptions that probably pertain only to me.

It's weird that irrigating can be just as foreign to ostomy patients as colostomies in general can be to cancer patients who are completely foreign to non cancer patients. You become informed through experience. I made it my New Years resolution to try irrigating. It was completely foreign to me prior to that like irrigators are a secret society or something. And it's always been odd to me how there is this criticism of the process by non irrigators so that irrigators feel the need to defend themselves. Like they are stupid and wasting their time (not this post in particular, but a general attitude I've seen on many occasions).

The costs and benefits are very individual and you won't know what they will be until you try it for yourself. For me, the time involved seems to be too much to do on a regular basis (meaning three times a week, not daily... Not all irrigators irrigate daily). But I do like the option when I want to wear a very small closed, flat, mini bag under fitted clothes. There is nothing permanent about it. You can start and stop anytime, although it works the best if it's regular. But it works good enough for me to do it here and there right now when I want to. If I made it my goal to use wear a stoma cap, I would start doing it regularly, which I may do at some point.

Irrigating is basically self induced diarrhea giving you two days free. I'm not sure why some do it daily. I've read some patients who control with laxatives rather than irrigating, so similar to chocolate. Some irrigators have the whole process down to 20 minutes and then use a two piece drainable for late returns and just go about their day like anyone else wearing a bag. When late returns are done, some wear a stoma cap. So it's not like you're sitting in the bathroom for two hours even in a worse case scenario.

I learned the most about irrigating from a blog where the patient tried to go for a run and his bag filled all at once and he had to go home and change it. This happened to him twice and then he looked for other options that gave home more control. Every person has different reasons why it's beneficial or why it's too time consuming. It's definitely not a one size fits all.

[BrownBagger]

My biggest problem with a temp ileo was gas. I'd have to drain or burp the bag several times a night, which cut into my sleep and generally pissed me off. Perhaps if I'd stopped drinking beer, it would have been better.

In my experience, women tend to cope better with ostomies. I think it's because they're used to needing accessories to aid and control bodily functions. Guys, not so much.

I liked a one-stage, drainable bag for the 10 weeks I had the ostomy. The single-piece design has a lower profile because there are fewer parts.

Here's a joke. My wife used to refer to my bag as an Ole-ostomy. I said, only Swedes get those.

[KWT]

This is me in my new bikini: http://www.huffingtonpost.com/2014/07/01/colostomy-bag-model-picture_n_5548863.html?ncid=webmail1

It is!! Really!

I'm sure that's not the only baggage she comes with! DOH.

[Leighann Sturgin]

I'm sure that's not the only baggage she comes with! DOH.

Sooo not nice Kennytwisted

[Annemiek]

Hihi, but probably true kenny !

[steiconi]

I confess I had an ulterior motive for starting this thread: I'm getting a colostomy on Monday. I had a lot of trouble years ago with a temp ileostomy, so it was nice to read the helpful stuff y'all posted. I never knew about the UOAA, that's a great site! https://www.uoaa.org/forum/viewforum.ph ... 3c2472a766

Thanks!

[justin case]

You have to wear a temporary ostomy throughout chemo
I got mine,
we didn't agree too well, and had it removed 3 weeks later.
Michael

[tammylayne]

Fact - Keeping a sense of humour helps ALOT!!!

I will never forget the time I emptied my bag - standing up, and it slipped out of my hand....warm...wet poo running down my leg. For whatever the reason...I found it funny, thinking HUH....if it wasn't that it is POO,,,,it wouldn't feel too bad,,,,then laughing uncontrollably at that thought!!! I was at home,,,so that helped, but it was that moment that I realized if I was to get through this, I had to laugh. I had mine for 18 months...there were MANY opportunities where I chose to laugh

"Stella" wasn't a frequent singer, so I was lucky that way, but I know others have mentioned their stoma's to be quite loud. Best line I heard...."Not bad sound for a 2 inch speaker".

Good luck with yours....I know the freedom to be gained will far outweigh the issues once you find your way!!

[BrownBagger]

You have to wear a temporary ostomy throughout chemo

I got reversed before chemo.