First time

[frustrated and anxious]

first time

hi everyone, my name is Leah. i am a newbie to forums and ileostomies. i have had Crohn's for 8 years and have battled it with everything i had until about 3 months ago. at that time i was hospitalized (for the millionth time) and told that i need to have an ileostomy done. i was devastated. i am a young mother of two and i thought my world had ended. i am now 2 months post op and i now know that my life isnt over. quite the opposite in fact. in the past 2 months i have been able to lots of little things with my family that were a struggle before. it has been a blessing but i am still having lots of emotional struggles and lots of questions. i had been somewhat comfortable with the stoma and changing the appliance but i recently had a leak in the middle of the night and my confidence is shaken and i am constantly anxious. now i am questioning everything and CONSTANTLY checking my seal. i use holister one piece with paste. i dont know know if this is the right thing. should i not use the paste. does that make the seal weaker? what about moldable rings? should i try that? how i can ensure a better seal and allow myself to get some sleep?
frustrated and anxious

 

[Jennjenn]

Hi welcome

I am glad you found the forum. There is a lot of helpful information in this link to a stoma sub forum for the questions that you have. I hope that things get easier for you.

http://www.crohnsforum.com/showthread.php?t=10840

 

[ameslouise]

Hi Leah and welcome!

I am a newish bag lady too and I love it! I am so happy to be free of the pain and accidents.

The first leak can really be a bummer and totally shake your confidence. We have all been there! I had three leaks during the first month after I got my ostomy. They were all in the same place. Finally, one day during bag change, I left my bag off for a few minutes and watched the natural undulations of my stoma as it moved. I even watched it spew. What I found was that my stoma dipped down and to the right, and that's where it was leaking under the seal.

I tried paste and seals, but what ultimately worked for me was switching to a convex bag. I use a Hollister one piece. Knock wood - since then, not a leak! I was surprised I needed a convex because my stoma sticks out about 3/4", but just that little dip down to the right was enough to warrant needing the convex.

So, the short answer is, you can experiment with different bags/brands to see what works best for you. And never, ever go out without a spare bag and clean up supplies in your purse!!

Good luck - keep feeling good!! - Amy

 

[xJillx]

Welcome Leah! I am happy to hear your ileostomy has helped you in many ways, but I am sorry to hear about the recent leak.

As Amy said, it may take some experimenting with different products to figure out what is best for you. I thought this thread could be helpful: Click Here. Good luck!

 

[David]

I have no good advice in addition to what was said above, but I wanted to welcome you to the forum. It's great to have you here and I wish you nothing but the best going forward

 

[scottmyster]

HI Leah, Welcome to the forum, i am sorry about your leakage problem i hope you solve the matter soon it can be frustrating say the least. But i am glad to see your doing well other wise. i hope to see you around the forum. best wishes.

scott

 

[Astra]

Hiya Leah
and welcome

I haven't got anything else to add, I've not had Crohn's surgery.
But I hope you find comfort here with us and I'm sure all the folks with stomas will look out for you!
lotsa luv
Joan xxx

 

[robbo87]

Hi leah, I've recently had an ileostomy and also had a few leaks when i was in hospital. It was so frustrating, i was angry,upset and almost feeling humiliated. I can totally understand the emotional struggles you are having.

I use dansac bags which i think are convex?.. one piece things, again it was the same spot where it leaked. It seems that part of my stomach just tended to "fold so the back would always crease and not stay properly. I started using the moldable rings and things where i lot better and i went weeks without a leak when i returned. I had my first leak at home in the middle of the night, the day before i was going away for the weekend for my first short break. It was awfull. rushing up out of bed trying to sort everything and then changing the appliance, something i really cant stand doing, and since then i have been totally paranoid and scared of going out incase something happens again.

like ameslouise has said, trying different applicances when you have the oppurtunity sounds like a good idea and something i wouldn't mind doing. although theres so many different things its hard to make a choice!

 

[glum chump]

Hi Leah:

Like you and everyone else has said, the first leak is the worst. I had a huge blowout two nights in a row and I was terrified and was emptying my bag every hour or two for a while after!

I notice that you said that you were using a paste. I find the paste to not be very useful and I actually really like the seal (I use the Adapt ring from Hollister) much better. I use the Hollister New Image 2-piece and that's the one that has worked for me.

You might want to contact the different companies and get them to send you different samples of their products to figure out what works best for you. Also, have you talked to your ET nurse to see if they have any suggestions? Often times, they might have samples of stuff for you to try that might be helpful in the short term until the different products arrive from the manufacturers.

Another thing that you might want to try to increase your confidence in the short term is some sort of tape to secure the edges of your tape. I use the 3M Micropore which is fairly inexpensive and gives me a bit more security.

I'm glad that the ileostomy is working out for you. You'll slowly start to notice that things will get much much better!

Welcome to the forum!

Cheers,

Kismet