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Ostomy Chatter
Tuesday, 18 January 2005
Welcome
Mood:  happy

Welcome to the Rapides Ostomy Association Blog! Please feel free to ask a question, give and answer, comment or just vent.

This is an open blog, meaning that anyone can post a message. You need to register with Lycos/Tripod before you can post, just a formality and a security measure.

The webmaster will moderate this blog which means that if you get nasty or off content, then he will zap your post. Nasty folks get a second chance then they're gone. Off content gets three chances. The moderator also reserves the right to moderate this blog as he sees fit, so be nice and stay on content related to the website.

Remember, treat others as you would have others treat you.

To view the posts, click on the 'View Comments' button on the lower right.

Webmaster


Posted by rapidesostomy at 4:46 PM CST
Updated: Wednesday, 19 December 2007 7:14 AM CST
Post Comment | View Comments (16) | Permalink

Comments Page

Sunday, 13 February 2005 - 10:42 PM CST

Name: Barb

Hello,
I have been reading the information on the web site. It is very easy to understand and helpful.
I was diagnosed with rectal cancer last Sept. I was treated with 5-FU continuously for 6 weeks along with 6 weeks of radiation therapy. Chemo side effects were minimal, I had two episodes of nausea. I missed one day of work but I am blaming that on the flu shot I got the day before.
The worst part was the radiation treatments. The itching and skin breakdown were pretty hard to deal with.
I had Surgery on Dec. 14. The tumor was so low that I now have a permanent colostomy, however the tumor was almost completely gone and the lymph nodes were clear. I have no evidence of spread anywhere so I feel pretty lucky.
I am adjusting my new "mate" pretty well. I can confidently go out to eat with friends and go shopping without being self conscious now. The hardest part is body image for me. It doesn't seem to bother my husband in the least, for which I am very thankful. He is very supportive.
Mon. (Feb 7) I will be returning to work.
Well I did not intend to ramble on so. I just wanted to tell you about the differences in my treatment which I believe is the latest in rectal cancer treatment, according to Dr. Wold and what I researched on the internet prior to getting treatment.

Thank you
Barbara Maxwell

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Monday, 14 February 2005 - 6:52 AM CST

Name: Webmaster

Thanks for your story Barb! An ostomy is not the end of the world, just a new way of looking at it.

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Thursday, 18 May 2006 - 10:36 PM CDT

Name: Mike Stringfellow

Does any one know of a company that makes swimwear for ostomates? I am 38 with an active family and have not been able to find anything. Any Sugestions?

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Friday, 2 June 2006 - 12:09 PM CDT

Name: Chris Appleyard
Home Page: http://None

Hi. I wanted to say I'm glad there's a blog like this out there. My boss had an ostomy and I'm definatley going to forward this site to him. I hope his story and advice can help others. As said above, an ostomy is definately not the end of the world, and he's proof enough of that for me.

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Saturday, 3 June 2006 - 6:57 AM CDT

Name: Webmaster

You're absolutley right! Having an ostomy is not the end, it is just a NEW way of life. There is nothing that cannot be done now that was done before. The only difference is how you do it. I want to encourage everyone who has an ostomy to join the UOAA at www.uoaa.org and mainly subscribe to the Phoenix magazine. The mag is full of info and always has a story about an ostomate living high.

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Wednesday, 28 June 2006 - 1:41 PM CDT

Name: "Mark"

Hi guys. You might already know this, but there is a really good dating website for ostomates - MeetAnOstoMate.comI thought you might be interested. CheersMark

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Sunday, 3 September 2006 - 9:12 PM CDT

Name: "anonymous"

Mike Stringfellow wrote:
Does any one know of a company that makes swimwear for ostomates? I am 38 with an active family and have not been able to find anything. Any Sugestions?
I'm going to take a chance on taking it for granted you are male.  Mike I have worn an illiostom for 14 years.  I  was able to get by with normal swimsuits of the baggy sort until my latest revision put the stoma in my upper right quadrant.  Now I just use an opaque t-shirt with my same swimsuit.  Sorry, I didn't reply earlier, having just found this site.  I live by the motto if you ain't cheatin you ain't tring'  There is always a way.  I have never heard of a company because I have never found a need for such an item.  I swim, teach, weld, woodwork, have ridden horses, and found that the only thing I won't do is crawl on my belly for less than $30 an hour!!!

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Saturday, 30 December 2006 - 2:12 AM CST

Name: "Holly Denman"

I have been thinking of searching for this blog for awhile. I have had my permanent colostomy for a couple of years now and it is still not my friend. Though it is not uncomfortable and I guess I am used to it, I still can't figure out how to take my shower every day. Do I just get the bag wet and then dry it off. Do I take the bag off, shower and then put it back on, do I skip showers and just change the whole appliance every time I shower? I am sooooooooo confused!!!  Nothing seems to take care of the gas; the filters only work until you sleep on them one time. The most logical thing I can think of it just not to eat, then I don't have to worry about what comes out.  The other hard thing is just seeing it everyday reminds me of the pain, the permanence, just like if I were a breast cancer patient and saw the scars every day. I feel like I walk around with a big "c" on my forehead for colostomy.  Well, thanks for listening.

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Friday, 19 January 2007 - 3:02 PM CST

Name: "Sherryl"

 
Holly I hope this helps.  I've had a permanent colostomy for over 15 years.  I'm 42 with 3 kids.  I've always taken a shower everyday without even thinking about it.  I just dry off the bag (I use a two-piece system from Convatec) like its another part of my body.  As far as the gas - I've never used a filter, just watch what I eat and when I eat it.  Yeah, I get "air" in the bag but with the 2-piece I just go into the bathroom and let it out.  Don't get frustrated.  When I got mine my ostomey nurse told me most people take 5 years to adjust - that is so true.  Do I like it? Heck no!! but its just a different way of life that is the only alternative for me.  Good luck.
 
"Holly Denman" wrote:
I have been thinking of searching for this blog for awhile. I have had my permanent colostomy for a couple of years now and it is still not my friend. Though it is not uncomfortable and I guess I am used to it, I still can't figure out how to take my shower every day. Do I just get the bag wet and then dry it off. Do I take the bag off, shower and then put it back on, do I skip showers and just change the whole appliance every time I shower? I am sooooooooo confused!!!  Nothing seems to take care of the gas; the filters only work until you sleep on them one time. The most logical thing I can think of it just not to eat, then I don't have to worry about what comes out.  The other hard thing is just seeing it everyday reminds me of the pain, the permanence, just like if I were a breast cancer patient and saw the scars every day. I feel like I walk around with a big "c" on my forehead for colostomy.  Well, thanks for listeni

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Tuesday, 11 September 2007 - 2:56 PM CDT

Name: "ostomy and proud"
Home Page: http://ostomyandproud.blogspot.com

My Ostomy journey!

http://ostomyandproud.blogspot.com

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Monday, 1 October 2007 - 2:09 AM CDT

Name: "James"

Hi all

46 Male

I just had an emergency colostmy due to a large syst letting go and had twelve inches of my colon removed.

I am  now using Holister two piece bags.  I am going on two months and am schedualed to have it removed January 2008 

You know something'' I dont think at this point I desire to have the operation to have my colon reconected.

At first when I woke up in the hospital with the bag on and saw the huge stiches I tuned myself off to all the nurses and to all who came to visist me.  I guess I felt less human ,but after a couple of months I have become comfodtable with the bag.  I have all products ordered online and brought to my door.  I have a compleat change out that I take with me to work and keep in my lunch bag should the need arise.  When it comes to showers I leave the bag on and act like its not there.  

I now find having to fo to the bathroom to urinate a nuisance but I love how quickly I can empty the disposable bag and put it nack on.

I dont get rid of the bag until I absolutley have to.

Anyway Best Wishes To All

 

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Saturday, 3 November 2007 - 1:14 AM CDT

Name: "Supportive Wife"

Hello,  My husband has had a colostomy for alittle over a year and is again undergoing chemo again for the third time for rectal cancer with liver involvement.  Our problem is the constipation that has accompanied his treatment. This time after the constipation been resolved and now he is having pain due to the irritation under the wafer.  He uses the two piece Holister with disposable system.  The pain seems to be under the wafer which is very irritated.  Have you any advise of how to treat the irritated tissue under the wafer?  It doesn't look like a yeast infection but I used the yeast powder just in case.  He won't ask for help, but he is very miserable.  Any suggestions will be helpful.  Thank you, Supportive Wife

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Wednesday, 19 December 2007 - 1:38 AM CST

Name: "James"

Hi I have also had this problem.  I found out it was caused by using adapt paste.  I decided to just put a little rash powder ''which will sting for a bit and then use no paste.   Just use the glue on the wafer.   I wanted to alow the rash to heal. From time to time I would remove the wafer and let air get to the rash.  I changed my wafer every two days in order to monitor it and put on more powder.

I have not used the paste  or the powder for the past two months now and the rash is not coming back. 

Hope this helps.

 

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Wednesday, 19 December 2007 - 7:03 AM CST

Name: "Webmaster"

There have been manu cases (including me) of a reaction to certain brands adhesive that they use on the wafer. It can also appear from the use of certain brands of paste or other additive used under the wafer. In addition, it may mean that the wafer needs to be changed more often.

I would first try James' thought about eliminating the paste or if paste is really needed, try a different brand. Do the same with any other powders or anything else placed between the wafer and the skin and then try a different brand of wafer.  

 

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Thursday, 3 April 2008 - 10:30 AM CDT

Name: "JAMES"

Hi Folks

Just wanted to give you an update. On 3/20/2008 I elected to have the reversal surgery due to an upset of my work status and upcoming loss of my medical insurance which was being used to pay for the Colostomy items needed.  All is well so far ''however I have learned certain foods can no longer be eaten since the easly bind me up and using a muscle that has not been used for eight months is proving difficult.   My very best wishes to all of you!!!

 James

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Thursday, 3 April 2008 - 5:03 PM CDT

Name: "Webmaster"

Glad to hear the reversal worked, for whatever reason!!

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