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john68
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26/06/2019 8:59 am  

Hi Lisa, can you pinpoint where on the wafer the leaks are happening. Also have you changed anything you are eating or anything new you may be wearing restricting the flow 

ileostomy 31st August 1994 for Crohns


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SqueakyandLiza
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26/06/2019 10:21 am  

Thanks John and Linda.

The most common leak spot is on the side, toward my wound. I have lots of wrinkles in my skin and scar tissue building up around the wound.  Usually the paste does a pretty good job of preventing leaks but this week is a mess. 

The only real difference in my diet this week has been the addition of strawberries. I was starting to wonder if that was the problem. I made a bunch of strawberry jam this weekend and still had berries left so I made shortcake and we've had the the last 3 days. 

I think I probably need to stop eating earlier in the evening. I haven't figured out how to sleep any way but on my back, between the ostomy and the wound, so things during the night don't really drop into the bag. 

Plus Squeaky is recessed quite a bit and the opening is to the side instead of straight out. And there is a mucus fistula on the other side (toward the wound) so things come out on both sides. I feel like even the convex wafer doesn't give enough pressure to keep the opening always in the wafer. And the convex wafers are giving me a round hard callous on my belly. 

So basically,I'm a mess. And it is probably my busiest work day of the month and I'm doing it on just over 3 hours of sleep. I just realized I am complaining a lot. Sorry. 


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john68
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26/06/2019 11:08 am  

Hi Linda, Firstly you are not complaining!! On going issues will wear any one down, do u notice any erosion on the wafer or is it a case of not forming a good seal. I have no experience of paste but barrier rings are a good extra defence. When a problem gets out of control the stoma nurse should be brought on board. 

ileostomy 31st August 1994 for Crohns


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LLNorth
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26/06/2019 11:36 am  

Oh, Liza, you are not complaining and there are people 9n this website who have experiences that we want to be of use and help to others in some way. I use Hollister barrier rings. Have you tried a barrier ring? They form to your body right away and stay there as they warm up (mine melt down quite a bit after 3 days). The supply companies are really nice about sending samples, which usually arrive quite soon.

I love the smell of coffee in the morning. It smells like .... victory.


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SqueakyandLiza
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26/06/2019 11:40 am  

Oh no. Squeaky decided to chat with my co-workers. Seems louder here than at home. 


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LLNorth
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26/06/2019 11:58 am  

Augh, wish I had a guaranteed solution for stoma stifling! I have a Stoma Cloak that I wear sometimes if I am going to be in a quiet meeting at work; I also put on a cardigan and pull the left half a little over the stoma and keep an arm over it. This works pretty well, and I have become pretty skilled at immediately coughing or clearing my throat - this takes lightning reflexes!

I love the smell of coffee in the morning. It smells like .... victory.


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john68
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26/06/2019 12:05 pm  

Just look shocked 😨 and blame someone else 😂

ileostomy 31st August 1994 for Crohns


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sjlovestosing
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26/06/2019 12:27 pm  

Hi Liza, 

Wow, what a time you are having! Have you consulted your ostomy nurse about any of this? She or he would be able to make some suggestions or refer you to a specialist. When you refer to your doctor, is he the surgeon that did you ostomy or is he a general practitioner? I ask this because, if I were having these major issues, I would ask my surgeon as to what the next step would be to rectify the situation.

Hope all works out for you soon.

Stella


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SqueakyandLiza
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26/06/2019 2:09 pm  

Stella, usually I am talking about the colo-rectal surgeon. Or at least his nurse practitioner. I need to go see the ostomy nurse again since this is getting ridiculous with the leaks.

LL, thanks for the tips. I'm so used to being home alone during the day, so Squeaky can sing as loud as he wants

John, that is so funny!!  I might have to try that. I just have to decide who to blame. 😇


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VeganOstomy
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26/06/2019 2:44 pm  

Oh no, Liza. I'm sorry to hear about this.

You mentioned strawberries are new. What about things like shampoo or soap? Have you been using anything else on your skin that might be different from before? 

Has it been hotter this past week than before? Could sweat be a concern? 

Are you able to see a stoma nurse who can run down a checklist for you and hopefully find out what's going on? Can you speak to your boss about working from home again? 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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SqueakyandLiza
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26/06/2019 5:32 pm  

Eric-I haven't changed anything like soap or shampoo. My skin has been really broken down around the stoma so I have been doing some crusting, but I've been careful to remove all the loose powder with a barrier wipe. 

Unfortunately extending the work from home isn't an option. It is very frustrating because I know I am more efficient at home. And I am in a different state from the rest of my work group, so what is the difference between them calling me at home or calling me at the office?

Thanks for responding. 🙂


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SqueakyandLiza
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26/06/2019 11:19 pm  

If anyone is keeping track, I am now up to 5 ostomy changes in 3 days. Ugh. 


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john68
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27/06/2019 3:50 am  

Hi Lisa, The next time you change start by measuring the stoma. Clean around and avoid all soaps. Dry skin and use as little paste only what is necessary. Warm the wafer ( not hot ) and apply. Put on pouch and apply gentle pressure with your hand over for a few minutes. Also make an appointment with the stoma nurse. 

ileostomy 31st August 1994 for Crohns


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LK
 LK
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27/06/2019 4:19 am  

Liza, you are putting up a good fight. Keep it up, does'nt seem like it but it really will get better. Stay positive. It can be hard at times.

About sleep...I sleep on a slant. It helps the gravity of the output, keeps it in the bottom longer, plus you can still sleep on your side if you wish. Stuff a pillow behind your back. Combine slant with, eating your bigger meal earlier in the day to eliminate too much output at night.  A lunch size meal before 6, works well. Light snacks are fine in the evening. Drink with meals,before & after.

When thicker in the day I pick up my fluids & use the Hollister gel type deaod. in packets at night & rub it to the top of the pouch for more slip. On a change, I put extra pressure on the wafer at stomas hole, the I place  one hand right over the whole wafer and hold 5 min. if need be, I also use a warm hot water bottle with dry washcloth over pouch and stoma  and rest 5-10.  More so in winter then summer. I've gone from too many leaks to rare ones like today. I deserved it tho. A rare feel good few hours, I took half a lge.  flowering bush down yesterday, cut stems & branches in pieces, & cleaned it all up by myself. Too much bending & not enough checking my seal.

Noisey stoma fun...clear your throat loudly, lol  say wow did you hear that & pat your tummy and say I must be lunch time...quickly move a non-wheeled chair, look at its legs exclaim, wow that was rough...look at the people behind you , turn back shake your head, frown & make a tisky noise with your tongue...too quick a noise, appologize & whip out your stoma & use it to educate people...around little kids, let her rip and watch the expressions deny it if asked or blamed & don't explain, if there too cocky whip out squeaky and shock them, tell them its a martian...too embarrassed, invite them to dinner, hold a supply show & stoma party, educate & take donations 4 research... Have fun, hang tough, You can do this.

 

Linda


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dogtalkerer
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27/06/2019 11:18 am  

are you more active lately? bending a lot more?  maybe try a cymed microskin flange.


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SqueakyandLiza
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27/06/2019 7:50 pm  

Thanks for all the responses. I have been more active this week since I have been working at the office for the first time in a year. I was on disability for 6 months and have been working from home for 6 months. So, I have been driving my car, going up the stairs at work, carrying my backpack with my computer. Lots of things I haven't been doing up til now. 

Linda--that is a lot of suggestions for when Squeaky decides to sing!!  I am definitely not bold enough to do some of them. I'm pretty sure Squeaky isn't in a hurry to be whipped out. 😂  But definitely some I will try. 

Today is the first day I didn't have to change my appliance before going to work. Yay. If I can make it til bed time, I could possibly go all day thursday without a change. After 2 Monday, one Tuesday and two yesterday, that would be nice.  

Dogtalkerer, I'm definitely going to google your cymed microskin flange. I'm curious now. 🙂


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SqueakyandLiza
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28/06/2019 1:27 pm  

Well I didn't make it all day Thursday but at least I made it 24 hours. Had to change last night at 8:30. Ugh. Still doing okay today though. Somehow I will get this back on track. 

Happy Friday everyone!!


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john68
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28/06/2019 1:33 pm  

Hi Lisa, You will get back on track, keep the stoma nurse on board. Take it easy 👍

ileostomy 31st August 1994 for Crohns


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SqueakyandLiza
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28/06/2019 4:12 pm  

Well, I made it through my first week of working mornings at the office. It was rough, but the encouragement from you all helped a lot. I had lots of leaks this week, but thankfully none at work. They were all at home, so that is something to be thankful for. 

Thanks for all the caring comments this week. You guys are the best!!


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john68
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28/06/2019 4:25 pm  

Hi Lisa, it’s great to see another ostomate released into the wild and running free 😂. Just kidding, just think you coped with a difficult start! How well can ye doin when Squeaky behaves.👍

ileostomy 31st August 1994 for Crohns


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