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sjlovestosing
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April 16, 2019 8:08 am  

Hi guys and gals,

I was away for five days and just came back last night, so I wasn't able to comment. I really can't add anymore wisdom than the others have. I still consider myself a newbie at this. (BTW, I mistakenly said that my anniversary was this month. OOPS! My sister-in-law pointed out that it was on May 15!!! The old memory is slipping!!!)

Concerning my experiences before and after surgery, when I found out that I had stage 2 rectal cancer and that I would need a permanent colostomy (and after the initial shock) I went into research mode and found this website, which has been and is still invaluable to me.  I read as much as I could about everything that could be helpful in my situation. Before surgery, I saw my surgeon and my ostomy nurse who showed me where the colostomy would be placed. My surgeon reassured me that the colostomy I was to have was the best possible one to get - an end sigmoid colostomy. (Later on, I discovered in my research that my surgeon, Dr. Peter Cataldo, really knew what he was talking about as he literally wrote two books on the subject of how to perform ostomy surgery!) After surgery, not only did the ostomy nurse show me how to put on my appliance, but she made my husband do it as well as she knew that I would need help for a bit.

Sounds like you are doing better than I did when I first came home. My husband helped me change my bag for a couple of weeks as I am not an overly confident person. He'd stand there and guide me as I placed the wafer and bag on myself.  It took me about a half an hour to do the routine for the first month, but now I can do it in about ten minutes from start to finish. Regarding your appliance, you may find that after your swelling goes down, that you might need a different appliance to keep leaks from happening. I discovered that I needed a light convex system, which works wonderfully for me. Like John said, get as many free samples as you can and see what works best for you. Never be afraid to ask your ostomy nurse for advice or help. Also, if anything doesn't look right, always talk to your surgeon and see him or her ASAP.

On the emotional level, though I was mentally prepared for the surgery and it's results, after a few months, when things became more routine, I went through a period of grieving my former body - the one where I could wear anything I wanted because there were no bumps or bulges. Though the grieving didn't last too long, because I realized how much more I had - my life for instance - I think it was a natural process for me in order to figure things out and re-prioritizing what truly is important in life.

Finally, I must give God the credit and glory for all He did for me in all of this: for His constant love, presence, comfort, and strength and for all the people He placed in my life who helped me through my times of discouragement, pain and fear (family, friends, relatives, community, the ostomates on this website as well as the surgeon and nurses). I could not have gotten through this and have come as far without Him. He is my constant Guide, Father, and Friend.

Wishing you well on your journey. May God bless you and keep up the good work.

Stella

 


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Awc19
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April 16, 2019 4:27 pm  

Thanks, Stella for your input. Unfortunately, my husband couldn't be there when the nurse taught me to change my pouch. He is really good at helping with everything. It took me a really long time to change it the first time. I think he could have helped with the process as I am not super confident in my medical abilities. Interesting you are using the convex wafer as the nurse sent me home with a box of them because she couldn't tell if I would need it or not because she wasn't sure if it would even out once the swelling was gone. Do you use the wax barrier with it and just replace the wafer with the convex wafer? 

I too am having a bit of trouble with what to wear. I wear jeans and shorts mostly and all of my jeans will hit in the wrong spot. Thankfully, it is spring so I think I can manage shorts and untucked shirts. I may have to wear some dresses which I can figure out. Do you wear any of the bands to keep it tucked in?

Thanks,

Alice

Alice


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sjlovestosing
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Posts: 181
April 18, 2019 7:42 pm  

Hi Alice,

I don't use a wax wafer, but do use paste to fill in the low spots. I use Coloplast's Sensuro Mio Light Convex one piece, which has been great so far. I usually change mine every three days.  I started using them because I was getting leaks and rashes around the stoma. I tried using a flat barrier 2-piece system at first and my ostomy nurse had me try the wax wafer, but it didn't help. So after some research and looking at Eric's reviews, I decided on the light convex. I also called the company and got free samples and advice.

Concerning clothing, I wore dresses and maternity pants for the few months after surgery. I now wear Gloria Vanderbilt Amanda jeans, because they are high-waisted and are comfortable. I usually wear dresses with a flared fit and will wear a maternity belly band to hold my appliance close to the body. The maternity belly band is not tight but keeps things from hanging loosely. I also have leggings and loose tops. I hope this gives you some ideas. Have you checked out Eric's videos on the topic of women's clothes? They are a great place to start!

Stella

 


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Dona
 Dona
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Posts: 637
April 19, 2019 1:12 pm  

Hello and welcome, Alice.

First of all, you will get better at this! Pretty soon it will all be second nature, honest. The main goal now is to heal and get stronger overall.  As mentioned already, your stoma will change as you heal. It may change size or shape and/or come 'out' more or retract so its shorter. Just be aware that that is both normal AND a bit of a challenge.

I eventually went to the convex wafer when my stoma retracted about to skin level. Use of the convex wafer ( light convex, Hollister) with a barrier ring, completely stopped the leaks caused by a retracted stoma. Remember, there are solutions and you will find them.

 

As to clothing. I used to wear dresses, but have now switched to skirts with fold-over or stretchy waistbands. This will give you both easy access to your stoma ( without having to pull up your dress) and the ability to adjust where it rides on your stoma. There are pants with these waistbands also. Start searching on Zappos /Amazon etc.

That coupled with a boxy kind of top or a tunic style ( and tights as Stella mentions) does the trick. Jackets and scarfs can provide further camo if you feel you need it..especially in cooler climates.

NO ONE WILL BE ABLE TO TELL YOU HAVE A STOMA/BAG!  REALLY!!! 

Keep asking questions.

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


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Awc19
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Posts: 8
April 19, 2019 4:31 pm  

Thanks, Stella and Dona for your help. So far the wax barrier seems to be enough but my stoma still has a way to go before looking healed up. This time I put the wax ring around my stoma rather than to the wafer and I hope this holds well because it seemed easier to do. I also watched Eric's video on changing the wafer and pouch and it went smoothly. Still quite nerve wracking and only time will tell if I did it correctly.

I did buy a maternity band today to help hold my pouch. I also found some higher waisted shorts at Target. I already have several skirts with the elastic waist band that I can wear. I also have some summery dresses which I can wear. I will just look more put together than I usually do, haha. Truthfully, the fact that I went and bought something is a good sign for me that I am moving forward and not trying to just ignore it. I'm feeling better so I am slowly thinking about things I can do soon! 

You all have been a huge support and so much appreciate your time and effort to replying to my questions. 

Alice

Alice


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john68
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Posts: 1218
April 19, 2019 4:51 pm  

Hi Alice, You may feel nervous but sounds to me you are getting the hang of things. It will take a bit of time for the stoma to settle that’s my Eric has advised you to measure and change more often. I have had a stoma for a fair few years and still when I go shopping for trousers and can’t get a suitable pair is makes me mad, but then when I do am like a dog with 2 tails 😀 Ostomates do live normal lifes

ileostomy 31st August 1994 for Crohns


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sjlovestosing
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Posts: 181
April 20, 2019 3:47 pm  

Alice, 

It sounds like you have a pretty good attitude about things. That is very important! You are also moving in the right direction. There may be times when you wish things were different and that's ok. Sometimes I do, but then it takes about a minute for me to stop feeling sorry for myself and be grateful for the life I have. John is absolutely right, we do live normal lives after all.

God bless.

Stella


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