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Posted by 1smile, on Thu Mar 14, 2019 1:05 am

Just wanted to say hi to everyone and whatever life throws at got this and will be okay😊

Reply by NewlifeVictoria, on Thu Mar 14, 2019 7:27 am

Hi Sweetie Thank you 😊😇How are you? '🏻‍♀️😍

Reply by Russ, on Thu Mar 14, 2019 12:00 pm
I’ve had an illeostomy for 20 years, but still have anxiety about leaks, etc... especially when traveling. It still plays a big role in my life, but wouldn’t be alive without it... so I’ve got that going for me. Fortunately or unfortunately (depends on how you look at it) I’’m going to be single again. After my last hospitalization for a blood clot in my left leg (residual from damage done from chemo and radiation long ago) my ex-wife stated that she “didn’t want this anymore” so here I am. I have two beautiful kids and a great career which keep me going as well as my faith... trying to stay positive. I just found this group after 20 years of being alone with my illeostomy and not having anyone to talk to with similar feelings and concerns! I wish I had know about this forum sooner 😋
Reply by 1smile, on Thu Mar 14, 2019 1:38 pm
NewlifeVictoria wrote:

Hi Sweetie Thank you 😊😇How are you? '🏻‍♀️😍

Hi back at you sweetie😁iam doing ok🙂 hope your day or night will be good.. looks like you live in New Jersey that’s a big time difference from sunny California ✨

Reply by 1smile, on Thu Mar 14, 2019 1:42 pm

Hi Russ..hang in there..I’ve only had my ileostomy for almost 4 years and it can get though but we are some strong people and can get through those! My ex also left me so I understand that.   Oh boy the leaks I think it just comes with our lives now.   Take care of you 

Reply by Russ, on Thu Mar 14, 2019 1:45 pm

Thanks for the reply.  Yep, life can be rough, but with everything I’ve been through, it’s definitely made me stronger and can endure just about anything that’s thrown my way.  I appreciate you and being able to talk to someone who knows what it’s like makes a huge difference.  Take care of yourself!

Reply by Puppyluv56, on Thu Mar 14, 2019 7:12 pm
Hi Russ,
Glad you finally found us! Love this site for lots of great advice, sometimes more honesty then one is prepared for! Lol 20 years is a long time to go without support! Would not have known what I would have done without my Ostomate friends!
You have had it tough! Hate that people bale on us when we need them most! I am glad to have a supportive Husband even if he is rather removed from any day to day care but then I am very independent and would not want him involved there!
Glad you have your kids and faith!
Glad to see you here and will look forward to further posts!
Reply by Puppyluv56, on Thu Mar 14, 2019 7:20 pm

You know, I no longer worry about leaks because I have not had one in so long. What I fear most is my pouch filling up and needing to empty. The odor is so bad and lingers so anywhere but home is stressful. I irrigate but still have output mainly due to radiation. Getting better! 

I have tried it all! Nothing really works! Any new suggestions to help with odor? All comments welcome! 


Reply by looking forward, on Sun Mar 17, 2019 7:09 pm
get one of the sprays that you carry with you and spray into the toilet
Reply by Puppyluv56, on Mon Mar 18, 2019 1:09 pm


Thanks. Do you have one that actually works? I have tried most brands and even made my own and I agree that it helps but does more of slightly masking the odor, not eliminating it! Be nice to find something that completly gets rid of it! Nothing worse than having to empty a pouch in public or at a friend’s house! 


Reply by Russ, on Mon Mar 18, 2019 1:25 pm

Hi,  I think I read on one of the posts that someone recommended simply add a small amount of baking soda with each emptying.  I’m going to try that at home and see if it helps any.  -Russ

Reply by Puppyluv56, on Mon Mar 18, 2019 1:39 pm

Thanks Russ, 

That was also recommended to me but I found that it clumped like the absorbent crystals do but may go back and try that again! I am irrigating but with just having Radiation, kind of unpredictable right now! 


Reply by looking forward, on Mon Mar 18, 2019 8:28 pm
use one of those potty sprays carry it in your purse and spray into the toilet before you empty
Reply by Puppyluv56, on Tue Mar 19, 2019 9:52 am


i do the poopourri spray and that seems to be the best yet! Even made my own with lemon oils and alcohol. And Cinnamon ones too! Need some new scents! Airwock actually puts out a poo stay in Lavendar and that seems to be pretty good to! Cheaper than the novelty gift  stores I have bought from in the past! 


Reply by Little Lulu, on Wed Apr 24, 2019 4:08 pm

My ostomy nurse suggested dropping a couple of tictacs in my bag after emptying. It doesn't totally eliminate the odor, but it does help. It's cheap, too!

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