Welcome to the forums, Ilona! 

Thank you for sharing your story. 

You'll develop confidence with time, and those worries will lessen as you become better at managing your stoma. 

The hourly appliance changes could become hard on your skin, so try spacing that out when you're feeling comfortable. Once you find a system that works, leaks shouldn't happen on their own. 

Take care, and I look forward to seeing you around :) 

Welcome to the group. My ileostomy wasn't planned either, I woke up in ICU and there it was. It can be very difficult to get your head around everything, but slowly over time it gets easier.

i remember that first time I changed my bag all by myself, I felt so proud, it was a massive turning point. Only problem was that I forgot to do up the bottom of the bag, an hour later I went for a walk down the hospital corridor and left a trail of poo behind me. I can laugh about it now, but there were tears at the time. I never made that mistake again.

As Eric says, it is not healthy for the skin if you change the bag too regularly. It's all trial and error getting the bag to fit with a water tight seal, you'll get there. Whilst you are at home, why not wear old clothes and try keeping the bag on for longer. You can see if the bag is beginning to leak and you can change the bag then. Once you get the hang of things you will soon be leak free

The fact that you are getting out everyday is amazing, I know how much courage that takes. Sounds like you're doing well, you'll get there 

Thanks so much!  I'm still getting used to the terminology, I'm not changing the bg every hour, I'm emptying every hour.  

Im so worried about leaving a trail of poo anywhere so looking forward tot he day when I can stop thinking about it constantly.

i want to thank you all so much for the information you provide to scared newbies like myself.  

Posted by: Illona

Thanks so much!  I'm still getting used to the terminology, I'm not changing the bg every hour, I'm emptying every hour. 

Emptying every hour is a lot better than changing every hour! But that should hopefully settle down soon. 

Out of curiosity, would it help if I had a page with common terms? I've always wanted to publish one but didn't know if anyone would find it useful.

Emptying every hour makes more sense, I was wondering where you were getting that many bags from.

Don't worry about the trail of poo, that's the kind of thing that happens to someone like me, I'm very accident prone. 

For me it was about the 2 months stage when I finally started getting the hang of having a bag and wasn't checking it every two minutes 

Please post common terms!   A lot of my confusion in the beginning is just using the correct names for all my new products.  I was using wafer and cookie interchangeably, I also said bag but it's a flange?  I mentioned to the nurse that the products should just be numbered in order of use.

Sarah, as I'm almost at 2 months that would be an ok timeline for me. I'm so fortunate in every way, especially my work.  I can work from home if I need to but I miss seeing everyone and being around people so I'd like to show my face at the office now and then without worrying about a mess and embarrassment.  I will heed the advice I got in the beginning to keep an extra set of clothes with me.  When I first went out after my surgery I carried the extra set of clothes in my handbag.  I got better and don't do that anymore :-)

Welcome Illona,

Good to 'meet' you and hear your story. Its true everyone gets here by a slightly different method but we all have similar concerns and problems to solve. Thats why its so good to hear what everyone else has to say.

One thing I found useful when I was having a lot of leaks ( from my stoma changing size mostly) was to keep a journal. For every change I made a note of what I did, every new method of changing, or brand. Write it all down .. then you may well be able to piece together what works and what doesn't in your case. ( and write down or save the packaging from any stuff you are using).

If you are having trouble sleeping through the night with out getting up to empty your bag try not eating much or anything later in the day. I know this is hard to impossible for many of us, but it works for me. Drink LOTS of water in any case.

I mostly eat breakfast and dinner. Since I have an illiostomy...'stuff' seems to go through in about 6 to 7 hours.

And Eric... YES. It would be good to have a common nomenclature.

Since you are our bagmaster( I love that) ...Bags should be BAGS ( not pouches). Thanks, as always.

And like Sarah said don't worry about the trail of poo. Happens to all of us. After my hernia surgery ( about a month ago..posted .on another thread here) the nurses who put on a new appliance forgot to close the bottom of the bag! It was only when I looked to see what they had done that I noticed it. It was not my usual brand, so I was just checking it out. I noticed BEFORE it all started up again. They were pretty horrified when I told them.

Dona,

I took your advice and ate less last night.  I was able to go 4 hours during the night without getting out of bed to empty!  I would like to do this again but it's very hard at the moment.  I'm on prednisone for a few weeks and so hungry all the time.

I am still trying to regulate my diet also, every day can have both liquid and thicker consistency output.  I'm a science experiment!

Illona, thats exactly right. You are and experiment. A worthwhile one too. Maybe after you get off the prednisone ( I was on it for over 3 years.. I know!) you will be better able to control when you eat. It is kind of a balancing act.  If I am hungry later in the day ( like after 2PM) I try to limit myself to food with not muck bulk in them. That also seems to help.

I am happy you got a few more hours of sleep. That is so important. The output does change very quickly from liquid to sludge...its kind of fascinating. You will get though it. It just takes some time and paying attention. The new you can be better than ever.

Posted by: Illona

Dona,

I took your advice and ate less last night.  I was able to go 4 hours during the night without getting out of bed to empty!  I would like to do this again but it's very hard at the moment.  I'm on prednisone for a few weeks and so hungry all the time.

That's good to hear that it's helping - but I would imagine it will continue to be difficult until you get off prednisone. That's actually an interesting problem. I was on prednisone before my ostomy, and I ate all day and night!

That's actually an interesting problem. I was on prednisone before my ostomy, and I ate all day and night! I'll start a new thread about sharing tips for getting a better sleep at night.

Greetings  from greece.

I am new to this situation. Since may i have a temporary ileosromy and a permanent colostomy. Right now i am a little worried about the size of the wafer, i am not always sure that i cut it right and i am worrying  if its too tight.

Have a lovely day

Hi Louiza, thanks for joining!

There is a special section of the forums for people who have two stomas :)  Feel free to post questions or concerns there so it can get more exposure: https://www.veganostomy.ca/community/more-than-one-bag/

Friends,

I wanted to reread my first post here.  I am feeling pretty good about myself now and am proud of how far I've come. A special thanks to Eric and you, my fellow ostomy friends.  You have all helped me, whether in a big or small way, to get back to living my life.

New ostomy friends, it's so hard at first but it does get better!

On Tuesday I see my surgeon about a reversal surgery (I'm terrified of surgery again but I want to have this reversal so much).  I just had a CT scan with good results, so I'm hoping my surgeon agrees with my oncologist that I'm eligible for a reversal.

Have any of you had the reversal surgery?  Any idea what I can expect as far as hospital time, healing time etc?  From what I've read so far it looks like I'll be out of work at least 6 weeks.  What I really want to do is book a flight for the trip I had to cancel due to my cancer.  I'm hoping if I have the surgery in January that by May I'll be ready to visit my beloved UK.

Thank you all so much!

Illona

Good for you ! I hope you will be able to get the reversal soon like you want . It will be nice to not have to deal with all this and get back to normal ( as normal as we all may be anyway Ha !) . I hope you can book your trip that you missed and you get to enjoy it . I enjoy your comments on here . Best of Luck to ya .