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SqueakyandLiza
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January 16, 2020 1:32 am  
Posted by: @dieffenk

Thank you, all for your post, going thru a hard time with learning this new life, I hope I can find the encouragement and wisdom you bring to this forum

Kevin, we have all been there, some worse than others. I still struggle quite a bit, but posting questions, fears, and frustrations here has helped. Especially because so many people post kind encouragement and helpful suggestions. 

Do you have something in particular we can help with?  A question you want to ask?  Or do you just want to vent about how much it sucks to go through this?  Whatever will help you through this tough time, we are here for you. 


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john68
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January 16, 2020 2:33 am  

Hi Kevin, An ostomy is a major life style change and some come to it easier than others. The forum is not only for the physical and appliance advice but the emotional side too! Keep heart and keep on VO 👍


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sjlovestosing
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January 16, 2020 7:36 am  

Hi Kevin,

Welcome to the forum. It can be overwhelming, but it does get better. Also, Eric has many videos which are extremely informational and reassuring. Many of us have been where you are now and, hopefully, can help you by sharing our experiences with you.

God bless,

Stella


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dieffenk
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January 16, 2020 5:40 pm  

@llholiday

Thank you for the good vibes!!


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dieffenk
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January 16, 2020 5:44 pm  

@squeakyandliza

Thanks , just venting , appreciate the thoughts from everyone..


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Tony
 Tony
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January 16, 2020 9:24 pm  

Kevin, 

 

Bless your heart, man. You're walking a road worn smooth by a long line of grieving ostomates who are on the other side of that grief an enjoying life, but you need not try to tamp down your sadness. For me it never disappears completely, but I am so grateful for my ostomy and all the blessings it has afforded me that I find it's just a twinge of greener grass syndrome. Coming to this community has been a blessing to me as well, with strong and kind people who know how to treat others with respect and compassion. I'm happy to find you availing yourself of such a haven as this. Soon you'll be on the other side of the grief as well. Just don't be afraid to come to us. It's our pleasure and privilege to be there for each other.


glenn.giroir
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January 18, 2020 12:03 am  

I may have lucked out with a very good surgeon, and maybe having had moderate to severe ulcerative colitis for so long has helped me to accept this, but since my surgery 6 weeks ago, I have found almost no reason to dislike my stoma.  I wear a wrap from ostomysecrets, and I pretty much forget that I have a bag.  I have control back.  I love the fact that I can just feel the bag and decide when and where to deal with emptying it - I have control.  I love to be able to eat without feeling like I will be sick.  I love to be able to have dinner with family and friends without disappearing before dinner is over to find a restroom, and having to stay in there sometimes for ridiculous amounts of time.  I love that I can walk to a public bathroom and not stress whether someone has the stall occupied because I can now wait.  That one is big - being able to wait - what an amazing feeling.  I have been back teaching for two weeks with my ostomy, and I have not found many negatives.  I can somedays get through my entire work day without emptying my bag (my ostomy is  not very active until evening and night).  I don't have stomach cramping in the middle of trying to teach a class full of teens.  I don't get random chills or sweats in the middle of talking to people.  My ostomy works great.  I think it was very well done.  I've tried 4 different ostomy products with equal success.  No leaks up to this point.  My abdomen around my stoma is nice and even.  The only challenge that I've found is at night.  The flopping pouch is a bit of a nuance.  But, I'm a light sleeper, and I have already learned to almost automatically check the fulness of the bag and to put it in the best position in bed almost without thinking about it.  I do miss wrestling and goofing with my kids as much as I did before.  We are all still getting used how to do things with my new reality.  I kind of sense my kids being a bit scared to hug or cuddle with me in fear of hurting me.  But, that is already going away, and I bet in a few months, we won't even think about it.  I know everyone's experience is different, but so far I count myself lucky to have had this surgery and to have chosen a permanent ileostomy.  That video is a bit pessimistic, and the solution that they propose seems a bit overly complicated.  I for one at this point don't mind dealing with ostomy products.  I do sympathize with those who may have difficulties and hope that they are able to find solutions that work for them.  


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SqueakyandLiza
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January 18, 2020 1:34 am  

What a great outcome for you Glenn!!  It is encouraging for me to hear, and probably will for be many new and future ostomates.

Keep up the good work and the awesome attitude!!


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sjlovestosing
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January 18, 2020 10:22 am  

God bless you, Glenn,

It is a privilege to have your positive outlook on this forum. You are so uplifting and certainly an encouragement to all of us!

Stella


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Dona
 Dona
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January 18, 2020 11:06 am  

Thats wonderful Glenn! 

Back before my surgery when I was freaking out ( and very sick with UC) I read something that helped. This person said that even although right now you can't  imagine a time when you won't think of your stoma every single minute.  Then some time passes and you  add another minute,  then more. Soon its hours. And thats what happened.

Like you I was more than ready for this surgery in my mind, and I had a good surgeon and a very good outcome. I never looked back and am very grateful.

 I respect the fact that the adjustment is more difficult for some than others. Not everyone gets here by the same path and this website has made me more understanding of those various ways.

And, you will probably get to wrestle with the kids again. I went on a zip line in New Zealand post surgery. What fun!


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LLNorth
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January 18, 2020 1:04 pm  

@dona

Dona — a zip line, that’s some nerve, ostomy or not! 
Glenn, I have not tried a wrap, might do that sometime but things seem to be going well as is. I have seen pictures of people wearing them showing below their shirt and I like the look. I work at a university and see a lot of college students dressed that way; I am sure they are not all ostomates!


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dieffenk
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January 18, 2020 5:52 pm  

@ileostony

Tony, thank you very much! Trying new products now thanks to Eric and this forum (and people like you). The filters on the SenSura Mio have really worked well for the last couple of days.(I had big time ballooning issues), with the filters on the Hollister, and I have heard they work for some, just not me. Take care.


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JTVT
 JTVT
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January 19, 2020 9:12 pm  

Hey Kevin,

If you find that the filters in the Mio stop working after a few days, I recommend the osto EZ vents, kindly reviewed by Eric. You can use them in addition to the filtered bags. They do require manual venting but I’ve discovered the Mio bags hold up to an amazing amount of pressure so there is room for error. I really tested the limits this AM when I woke to a full bag (of liquid) and so much air I could have played my pouch like a snare drum.  I don’t recommend this but I was exhausted and didn’t get up at my usual time to empty. 

It is great that there are so many products to try but it can be overwhelming. At least for me, it felt like a full time job sometimes. Now that I’m back at my full-time job, I’m glad I have a system that somewhat works for now. It is by no means perfect.  

This thread is interesting as it details a variety of experiences, most of which are positive. This is encouraging and I hope I get there. Overall, like Glenn, I’m relieved to not be so sick anymore. Certainly, if it’s between remaining in the hospital (or death) and a colectomy, I’ll choose the latter every time.  I still, however, find the ostomy situation exhausting and make new unpleasant discoveries every week. Like how loud and unruly a stoma can be in a quiet conference room. Or how none of my old clothes work because they hit me mid-stoma. Or that if your disease was more active at night (maybe this only applies to UC peeps) your stoma and rectal stump symptoms may be as well. I’m coming to the realization that I may need to set an alarm for 3AM every night indefinitely. 

I agree that in the grand scheme of things a functioning stoma is a dramatic improvement and ultimately no big deal, but man do I miss my colon when it was healthy! End rant 

Good luck all. 


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