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glenn.giroir
(@glenn-giroir)
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August 17, 2020 1:34 am  

Hi all.  I'm sure this is normal, but I'm a newbie so wanted to get some feedback.  I've had my permanent ileostomy since Dec 2019.  After all of the swelling went away it settled in at a little over 27mm in diameter (a little over an inch) and it is a pretty good outie at about 3 cm in length.  Most of the time, it is just relaxed and flopped over in the bag doing its thing, but at times, it really flexes and becomes hard.  This can happen at any time (I don't have to be using my abs or anything).  It especially happens when I mess with it while changing my bag.  It just perks up and the muscles contract and it feels hard.  I have absolutely no problems with anything - no leaks, no pain, and I eat anything and don't even come close to getting a blockage.  I've not seen my ostomy nurse since a couple of months after surgery, so I have not been able to ask all of the weird questions that I have.  So, I guess my question is, if you have an ileostomy, is it always soft and floppy, or is it sometimes hard to the touch?  Thanks.  

Glenn   

Ulcerative Colitis (1995)
Permanent Ileostomy (2019)

Doing what it takes to enjoy life to its fullest.


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john68
(@john68)
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Posts: 1626
August 17, 2020 3:44 am  

Hi Glenn, What you are explaining sounds perfectly normal All part of digestion and transit. 👍

ileostomy 31st August 1994 for Crohns


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LK
 LK
(@dlkfiretruck)
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August 17, 2020 6:42 am  

Hi Glen...it sounds like you are so normal its wonderful! It also sounds like my stoma and your stoma are related! Mine gets just like that &  about 1/2" to 1/4" inch short & stubby solid when I'm near the end moving it around to clean  & prep my skin for a new  pouch  &  also when it is cold!  It will occasionally go for a walk too & become about 7 or so  inches long &  then  after laying down for how ever long it takes to go back to normal length I can go about my usual activities &  just taking it easy for a day or two after...BUT... this is not what Eric, OR this site recommends! I would certainly strongly advise to anyone who experiences this  freaky adventure to make sure you go see or phone your GP about your situation just to make sure there is nothing more going on first!  It was not wise of me to be so unconcerned of my situation.  But...this is almost 11  1/2 years experience speaking.  This Feb., when I was in the hospital for a week just as Covid19 was announced,  my stoma  crept out for a short walk just before my scope. When the Gastroenterologist saw it she seemed a tad surprised to see it like  that as I had not said  anything about it doing this.  To my surprise She asked how often it becomes prolapsed?  Maybe it was the meds, but I chuckled & made jokes about Rose, my stoma,  liking the scenic route on occasion! She asked & I told her how I deal with it and all she said was Hmmm! When she asked about its usual length, I told her 1 to 3" inches was very normal for me. She said something about a repair and I remember asking if it was really necessary to "repair" it as I find my stoma to be relatively well behaved & leaks, knock on wood are so minimal & usually this human caused!! Then I told her about this awesome website I go to and well, you know what we  do here, so I told her I am finding that people who have flush, too short or indented stomas deal with so many more problems like...skin rashes, leaks & many other issues like  choosing the right appliance & everything else they need to correct the error of their stoma to gain control and make their  life livable for them again. I ended that with I'm not sure why some are just not made to dangle a bit as I think they are more problem free.  (We'll blame the touch of boldness  on the drugs!l!) SILENCE.............

I was without my glasses at that point but I would have liked to see the look on her face over my slight possible indirect but forward criticism. Filling the silence,  I expressed how the stress of a leak affects all aspects of life including cleanup  time, sleep, meals, laundry, everything,   but a leak several times a day or week can be brutal emotionally & physically,  especially when loosing sleep &  work time. We also had a conversation of deodorants during that week stay, but thats a whole  other forum for another day! 

Glen, l enjoy the openess of a newbie & this is why we are here!

I am so grateful to you Eric, for  making life easier for all of us! Thank you! 

Remember.... no question is a dumb question... ever! Right Teacher?

Linda


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glenn.giroir
(@glenn-giroir)
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August 17, 2020 8:38 am  

Thanks for your input!  I appreciate it.  I didn’t suspect there was a problem, but it’s so nice to talk to other ostomates!  I really like my stoma.  It has been a lot easier to deal with than I expected it to be.  I do a bag change every 5 days and mostly just forget about it.  Only complaint is that I can now easily gain weight.  I’d lived 25 years with a diseased digestive system.  Things would run through me so quickly that I could eat just about anything and never gain weight.  And, at least once a year I’d have a bad flare that would result in 15 or so pounds of weight loss.  I’m so much healthier now, but I’ve gained about 20 pounds over my “ideal” weight.  I just need to get a handle on eating with a healthy gut.  I’m working on getting back to eating healthy and back to where I want to be.  Thanks, again.  Cheers! 

Glenn

Ulcerative Colitis (1995)
Permanent Ileostomy (2019)

Doing what it takes to enjoy life to its fullest.


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glenn.giroir
(@glenn-giroir)
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August 17, 2020 8:48 am  

@dlkfiretruck

Linda,

 I‘ve said some crazy things to people during colonoscopies.  I once told a nurse anesthetist that I was a “My Little Pony Pro.”  I have two young daughters who used to love that show.  I guess I spent several minutes explaining all of the ponies to him.  He got a big kick out of me.  Thanks again.  Today is our first day back to school.  No students yet, just meetings.  

Ulcerative Colitis (1995)
Permanent Ileostomy (2019)

Doing what it takes to enjoy life to its fullest.


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Dona
 Dona
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August 17, 2020 5:13 pm  

Hi Glenn,

Sounds like your stoma is behaving itself just fine and doing its thing. Sounds about like mine anyway.. so hopefully thats O.K.  Be well. And good luck with school.

my niece just went back this morning ( second grade teacher). Still remote teaching ( california) but the teachers are in the class rooms. The kids picked up their packets of stuff last friday. 

 

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


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LK
 LK
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Posts: 856
August 17, 2020 9:07 pm  

Lol! Thats funny Glen, a my little Pony expert eh! Lol!  Theres nothing like a Colonoscopy Confession is there?!!! lol! Thankyou  for  the chuckle.

Back to school is a huge issue here in Canada, ( B.C.) Those of us that are immune compromised worry about those that are not & vice- versa.  Interesting times for sure. My daughter has MS and my son helps both his mother inlaw and I.   My daughter has 2  in school and a new born. We Moms are all   badly compromised so because it seems at this point we have a choice as to sending kids or not...my basement dwellers have decided teacher/course guided home schooling. 

WE all  appreciate the huge job Teachers have ahead of them thru this time. So may I take this opportunity to thank you and all teachers &  support staff for the work they have always done and the changes you are all bouncing into & making in the world of education due to Covid19. 

As always, You are very  APPRECIATED!! 

Linda


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SqueakyandLiza
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Posts: 628
August 18, 2020 2:45 pm  

Glenn,

I’m glad you got some good responses on this question. My stoma isn’t exactly floppy to start with, so I haven’t experienced this. My stoma is small and a little recessed. I’ve never noticed it getting hard, but can’t say for sure that it hasn’t. I guess Squeaky is a unique one. 😂😂

-Liza
Ileostomy 6/18/2018
“May your day be bright and your bag be light.”


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VeganOstomy
(@veganostomy)
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August 21, 2020 10:33 am  
Posted by: @glenn-giroir

ost of the time, it is just relaxed and flopped over in the bag doing its thing, but at times, it really flexes and becomes hard.

Here's where us ostomates have a front-row seat to what happens inside the body! What you are describing is called "peristalsis". It's the natural contractions of our bowel that helps to push things along in our gut. It often happens in waves and can sometimes cause the stoma to stiffen up as you describe. 

If you wear a clear pouch cover, you will notice your stoma contracting many, many times throughout the day. It's pretty fascinating and most of us don't' even notice unless we're paying close attention. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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