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2 months out of surgery

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(@johnny5)
Joined: 3 years ago
Posts: 18
Topic starter  

Hello, it's great to see a forum that supports others.

I'll make this short, I was diagnosed with Crohn's at the age of 20. Fast forward 23 years later, disease was manageable for the most part with Stelara injections but I developed strictures that made it difficult and painful to go number two.

Had surgery 2 months ago to remove 17cm of my sigmoid colon. It has been life changing and I'm thankful how things are going with my disease. My issues and frustrations I'm experiencing right now is looking for the right appliance. I've tried so many different types of bags and when I think the one that works is the one well it isn't.  I have a Colostomy and some days I have to change it or try to empty my thick output 3-4 times a day and experience the pancaking and build up behind or around the flange etc. Other days very little output and manageable. Stoma also got smaller and is flush so this has been a challenge using the flat pouches and I hate the convex bases.

Anyways glad to be here and will be asking lots of questions. 

 

Thank you 

Johnny



   
davidinthailand, LLNorth, LK and 2 people reacted
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VeganOstomy
(@veganostomy)
Admin
Joined: 12 years ago
Posts: 4639
 

Welcome, Johnny!

Finding the right appliance is tough. It's a balancing act between reliability, ease of use, personal preference, availability, cost, etc!!

Since you mentioned that you have a colostomy, have you spoken to a stoma nurse about colonic irrigation? That's something that could give you more consistency with longer periods of time between output. It does require some training, but it's a wonderful option for colostomates.


Just your friendly neighborhood ostomate.
~ Crohn's Disease ÂŚ Ileostomy ~


   
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(@johnny5)
Joined: 3 years ago
Posts: 18
Topic starter  

Yes, I'm visiting with an ostomy nurse more frequent than not now. We had a discussion about irrigation but it is early for this but something to consider in the future. 

Process time is about 90 mins every morning they told me. Something that has to be managed and not missed. I guess you train your bowels to go? 



   
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VeganOstomy
(@veganostomy)
Admin
Joined: 12 years ago
Posts: 4639
 

Posted by: @johnny5

I guess you train your bowels to go? 

It's not that it trains your body to go, but you're flushing out what is already in queue to exit the body 🤣 

It is a commitment, but the time between bowel movements could make it worthwhile.

Did the nurse say how long you'd have to wait before considering it?


Just your friendly neighborhood ostomate.
~ Crohn's Disease ÂŚ Ileostomy ~


   
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Tigerlily
(@tigerlily)
Joined: 5 years ago
Posts: 515
 

@johnny5 Welcome to the site. I irrigate, but not regularly. Just whenever I want a stretch of time without output interruptions. You can pick whatever time of day you want to irrigate, and it may take more or less time than you’ve been told. I irrigate in the evening, and it takes me about an hour, but I always allow for at least an hour longer, (when I don’t leave the house) in case of “late returns”. I’m happy to help you with the process anytime, if you want.

 

Laurie


Just a semicolon


   
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(@john68)
In Memorandum
Joined: 8 years ago
Posts: 2059
 

Hi Johnny, Welcome to the forum. Yep an ostomy can be a challenge at the start. But it will soon become second nature. But be put of by early day fails. Best wishes going forward 👍👍


ileostomy 31st August 1994 for Crohns


   
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(@johnny5)
Joined: 3 years ago
Posts: 18
Topic starter  

Did the nurse say how long you'd have to wait before considering it?

 

about 6 months after surgery if I understood correctly.

 



   
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 LK
(@dlkfiretruck)
Joined: 8 years ago
Posts: 1664
 

@johnny5  ... Hi Johnny & welcome to VO! Ask whatever questions you need to ask, No question is a dumb question here! Sometimes it can take a day or two to get replies, mostly over weekends just know that you will get replies. 

i found " VO " to be an amazing place for anything I needed help with right down to choosing a pouch that suited me better & my fav, the Osto-E-Z-Vents!! Eric has a video on them as well. I binge watched Erics videos like crazy when I first stumbled on VO!  

There are several others here who have had similar issues as your dealing with. I'm sure they will surface shortly ! I know it can be hard trying to find the right pouch, try to be patient a while longer with the process & yourself. 

I found it really helped me to give my stoma a name as I became happier with what I had been given. I hope you find what you need in a good pouch! 


Linda


   
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(@johnny5)
Joined: 3 years ago
Posts: 18
Topic starter  

much appreciated 😀 



   
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(@johnny5)
Joined: 3 years ago
Posts: 18
Topic starter  

I named my stoma poopsie 😲 



   
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LLNorth
(@llholiday)
Joined: 7 years ago
Posts: 603
 

Welcome, Johnny5. VeganOstomy is a wonderful place; you will enjoy learning and meeting new people. Best wishes to you. Things do settle down - your stoma Poopsie will adjust to you and you will adjust to him.  Greetings from me and Ruby.


Colostomy 4/30/18.
I love the smell of coffee in the morning. It smells like .... victory.


   
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Cat momma
(@cat-momma)
Joined: 3 years ago
Posts: 94
 

@johnny5 Irrigation doesn't need to take 90 minutes. I do anal irrigation and it takes me about 30 minutes. When you're just starting it will take a bit longer, but I think after a few months, you'll get a routine and it won't need to take that long. Also, since you have the option to stick a bag on, you might not even need to do it every day.


Incontinent in a better way, since 12 July 2023


   
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(@davidinthailand)
Joined: 3 years ago
Posts: 63
 

welcome johnny 5,

    im 4 months out and understand how frustrating this can be.       on average i empty 15-20x a day.    my output can be extra thick to watery and everything in between depending on what i eat.     i will say if your output is always thick you may not be drinking enough water.     i live in thailand,    very hot and humid so hydration is extra important,  but its really important for us ostomates to drink at least 2 or 3 liters a day to help flush your system and keep things moving.   

    good luck with this.    it does get better.       



   
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