The bag life…

…there are those days that are not easy peasy and the flange needs to be changed BUT unfortunately squishy stoma is not being nice and quiet and wants to be a fountain….UGH

 

It’s now been a little over three months with an ileostomy (well, truly my second ileostomy since May 12, 2016), but going from the latest date of squishy stoma, I tend to use the July 6th surgery date.

Some days it comes really easy and it’s just one more thing in my routine and feels almost “normal“, as crazy as that may sound to non-ostomates.

     And then again, there are those days that are not easy peasy and you have a flange blow out during the night.

        Or the flange needs to be changed and unfortunately, squishy stoma is not being nice and quiet.

It’s quite the  imagesbb34480af682aa478248bb4c097c2de4images  MOMENT to have to change the flange while the stoma is being active and playing “fountain.”

 My current issue with the bag is the ridiculous air fill up overnight.  

I try to get about seven hours sleep at night.  However, like clockwork, between 3 and 4 a.m. I will wake up with the largest coloplast sensura mio bag maxed out with air, even with the filter.   images

I hate to have to always change to a different bag for nights, mostly because then you have to pull a perfectly good sticking flange off your skin.  It seems like a lot of extra pulling adhesives on and off your skin daily.    OUCH OUCH OUCH !!!  However, the yucky LAUNDRY factor is not a great alternative.

It’s like air balloon meets liquipoop…welcome to my life LMFAO.  Luckily, my already warped sense of humor only got more warped with bag humor.  Laugh or Cry…gotta pick one

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      The Sensura bags, not the newer Mio bags, I have been able to use their MAGNUM night time bag very successfully with the drain at the bottom.  I don’t have to wake up at night and it’s a great night sleep, even if my internal alarm goes off at 3:30, I don’t necessarily have to go take care of it.

    I am pretty secure in feeling that I will not have a   blowout in bed with that larger bag on.  There is a “daytime” bag I use which is closer to the Mio maxi bag.   I think it holds about 720 ml, give or take, for a day bag.

What have I noticed as a difference between the two coloplast bags?  

The sensura bag (pictured), has on occasion had the coupling open up while just in normal wear.  The bag just fell right off   (NOT LOVING THAT HAPPENING)

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Sensura 11125
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Mio broken coupling

I don’t think any bag is perfect and they all have their pros and cons, as do the flanges/wafers. 

At three months out, I’m still in the midst of figuring out what the best thing to do every night of my life is.  If I am really tired or desperately need solid sleep, I will put on the night drain bag (Magnum)  and then use the Sensura day bag, even though it’s not my preferred bag for the daytime.

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Sensura Magnum 19041

Generally, I can usually get two nights out of a flange, occasionally three if I’m lucky.

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   That’s NOT terrible — but the insurance only covers 60 flanges for 90 days, while they cover 90 bags for 90 days.  I know there’s insurances that are far worse, so I AM NOT COMPLAINING.   I’m just not sure I understand the math or reasoning, because I can certainly clean out and re-use a bag.

The wafer, when it’s done, it’s done (as pictured below left).

BEWARE GRAPHIC YUCK (BELOW).   YES, THIS IS WHAT OSTOMATES DEAL WITH REGULARLY  images

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WHAT HAPPENS WHEN YOUR SEAL ON YOUR FLANGE GOES..        

The other thing that has happened is the filter leaking on the Sensura (tan bag) while I have had the bag sideways, which I like to use it at a 45-80 degree angle to put in into the stealth belt, or even just sometimes into my clothing with a waist wrap over it.
I don’t have any pictures of the Sensura filter at the moment, but it’s on the body side, not the away from the body side.   This is where the MIO filter is.  (Top smaller circle above the stoma hole.) img_8032

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 Thankfully the MIO has never had a leak, but it also keeps in too much air.   I have spoken to Coloplast and they are sending me external filters to use on the Mio bag that will hopefully resolve or at least help the issue.  It’s supposed to be a one-way valve, so it should NOT leak poo, but allow for air to escape.

           LAST BUT NOT LEAST AND HOPEFULLY MY TRIALS AND TRIBULATIONS WITH THE BAG LIFE CAN HELP OTHERS BECOME AWARE OF WHAT WE DEAL WITH DAILY AND ALSO HELP OTHER OSTOMATES TO SEE A REVIEW OF THE PRODUCTS THAT AT LEAST I AM USING.  

Here’s the different Coloplast bags I have been using for day use.  The Magnum is pictured above and you can see how large that is.  It’s fine for night use but I would not want to use it for daytime with a drain that comes to my mid-thigh, three inches above my knee.

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From top to bottom, you have the 11461, 11462 and then the Sensura 11125.  You can see the difference in the length of the bags.  The widths are pretty much the same.  You cannot see it pictured, but the fuzzy velcro on the Sensura (tan bag), does not extend all the way to the edges of the fold like the Mio bags do.  There hasn’t been a leak issue in regard to the velcro, though. 

     I would love to be able to tell you the name of this particular waist wrap but I don’t know it offhand.  I found it in a clothing store where they have  the spanx and things of that nature.

 It’s a medium compression and good for putting the bag between the layers and folding it over or sometimes I just put the wrap over the top (as shown in pic).  img_8315img_8241

They run about $10 US at stores like Marshalls, TJ Maxx, etc.  Also found some on WISH and have bought them.  Those are longer in length than the one I bought locally (wearing in photo), but also quite comfortable.  As you can see, it’s not terribly expensive.

       I TRULY DIDN’T expect my blog today to end up being a comparison of bags…but as blogging is pretty much thinking aloud as writing, this is what has developed.

 I hope it has been informative, helpful, insightful and even provided a few laughs. 

Sorry for the gross factor 101, but this LIFE with an ILEOSTOMY.

Sometimes you just gotta deal with…

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Author: crohns ostomy warrior woman

I'm a 48 year old mom of three, with Crohn's and UC for the last 32 years. I only recently in May of 2016 have had a permanent ileostomy and I am now getting used to life with a bag. Considering the fact that I was so against the idea of a bag for years, choosing to suffer instead of even learning about it, being worried about all the negative impact I assumed a bag would have on my self-esteem, my lifestyle, any romantic relationship, etc. -- I have to say I have DAMN well shocked myself that I went from the outlook of, "I'd rather ride my motorcycle off a cliff than have a bag" -- to recently becoming a new ileostomate who has found a passion of advocacy and awareness. My 32 year illness and finally this bag has somehow ignited yet another passion in my life besides fitness. I want to join the other advocates for knowledge about the invisible illnesses that can lead to ostomy bags and what we all deal with and many of us try to hide. I'm passionate about bringing more awareness about ostomies to the general public. I'm hoping my blog will encourage and inspire other people who are getting a bag or already have one, to realize they can still live their wonderful life and once they are healed up from surgery, they can resume their active lifestyle or even start a new one. It does not make them any less amazing. You are still who you are, and if anything, you're stronger for the struggle. So go climb the mountains, surfboard, climb treetops courses and do triathalons if that's what you're inspired to do. Make this the new and improved you with the bag. At least now we all don't have to run to the toilet every 3 minutes! Wear your bag proudly at the pool or beach. Wear those crop tops or low slung jeans. It's our battle and we won because we're still here. I'm still sexy and I know it, with my bag, and so are all of you.

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