The Leaky Colostomy Blues

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lynneann222
New Member


Date Joined Feb 2009
Total Posts : 4
   Posted 2/3/2009 7:55 PM (GMT -6)   
Hello, my name is Lynne and I had a big suprise 3 days before my 65th birthday. I went in for same-day surgery to have an ovarian cyst removed. It turned out that "cyst" was ovarian cancer wrapped around my bowel. They removed as much of the cancer as they could, and did a bowl resection with a colostomy. The colostomy is suposed to be temorary, but it cannot be reversed until I am finished with my chemo in April of this year, I am now half way done as of today and all my blood values are in order. My oncologist said that it would take a couple of months after the chemo is finished to have the reversal. In the meantime, I have a very leaky colostomy. The bottom half of the stoma is flush with my skin, and although I have tried several different systems, nothing seems to work. I am working with my ostomy nurse, and hopefully we can find something. I feel chained to my house for fear of leaks. Today I bought Depends, with hopes of at least protecting my clothing. Next weekend I am supposed to go to a Broadway show with Jane Fonda, and I don't really want to go. Can you imagine the smell of poo wafting through the theater? I don't think so.
The sad part is that I am feeling fine from the chemo, no ill effects except for hair loss, it's the colostomy that is making my life miserable. I will try the suggestions that you all have made and I have read in other threads, at least the ones that I haven't tried yet. Please keep on reading and writing, knowing that people are out there is absolutely lifesaving.
Thank you all,
Lynne

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 2/3/2009 8:03 PM (GMT -6)   
i'm sorry you are having so many problems. I hope you can get it worked out soon.
Have you tried teh hair dryer? or the eakin seals?
If you tell us what you are using we might could help a little more.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 2/3/2009 8:43 PM (GMT -6)   
lynneann222--welcome to the site smurf Glad you found it to get some answers...I guess I'll continue with Summerstorm's note...Are your stool's formed?  I know I have problems with the underside of my stoma, but I have an ileostomy, and the shear fact that the "stool" is so liquidy works against me!!
 
I also use an Eakin Seal which has been very helpful...let us know what products you use and we'll help ya out!!!

vette guy
Veteran Member


Date Joined Nov 2006
Total Posts : 650
   Posted 2/4/2009 12:50 AM (GMT -6)   
lynneann222 said...
Hello, my name is Lynne and I had a big suprise 3 days before my 65th birthday. I went in for same-day surgery to have an ovarian cyst removed. It turned out that "cyst" was ovarian cancer wrapped around my bowel. They removed as much of the cancer as they could, and did a bowl resection with a colostomy. The colostomy is suposed to be temorary, but it cannot be reversed until I am finished with my chemo in April of this year, I am now half way done as of today and all my blood values are in order. My oncologist said that it would take a couple of months after the chemo is finished to have the reversal. In the meantime, I have a very leaky colostomy. The bottom half of the stoma is flush with my skin, and although I have tried several different systems, nothing seems to work. I am working with my ostomy nurse, and hopefully we can find something. I feel chained to my house for fear of leaks. Today I bought Depends, with hopes of at least protecting my clothing. Next weekend I am supposed to go to a Broadway show with Jane Fonda, and I don't really want to go. Can you imagine the smell of poo wafting through the theater? I don't think so.
The sad part is that I am feeling fine from the chemo, no ill effects except for hair loss, it's the colostomy that is making my life miserable. I will try the suggestions that you all have made and I have read in other threads, at least the ones that I haven't tried yet. Please keep on reading and writing, knowing that people are out there is absolutely lifesaving.
Thank you all,
Lynne
I can't believe I'm the first one to ask this......are you accompanying Jane Fonda to a Broadway show, or are you going to see a show in which she is in????
Now, to attempt to address your leaking problems...
Though I have an ileostomy now, I had a colostomy for 15 years. Like you, the stoma was flush to my skin(there was even a "valley" on the left side, which was promoting the most amount of leakage) and it leaked constantly. I know a lot of people here swear by Eakins Seals, but for me, they weren't very effective.
What eventually worked for me was using a convex insert in my appliance, putting a ring of stoma-hesive paste around the hole in my appliance, and "picture framing" waterproof tape around the wafer. The convex insert will help pop up your stoma(or, at least, the skin around it). It might take a few changings to "train" the skin around your stoma to comply; the paste, unlike the Eakins Seals, will seek it's own level and help correct any skin imperfections you may have around the stoma; and the tape will help give you a better seal around the edges. It might take a little time for you to regain your confidence, but I'm ABSOLUTELY POSITIVE this will work for you. You might not get a week out of your appliance, but you should get a few days. I change mine 2-3 times a week anyway because I play a few sports and I lead a very active lifestyle.
 
Finally, if the answer to the first part of my question is "yes", tell Jane I said "Hi"!!!

Post Edited (vette guy) : 2/3/2009 11:55:35 PM (GMT-7)


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 2/4/2009 6:29 AM (GMT -6)   

hey vetteguy I did think that, too!!! 

Now, here's a question for my education:  Can a colostomy leak like an ileo?  Does is also depend where in the colon it is?  I thought they had formed output...which is why people irrigate.

Thanks!


badbaggirl
Regular Member


Date Joined Jul 2007
Total Posts : 275
   Posted 2/4/2009 9:38 AM (GMT -6)   
I have a colostomy and it does leak once in awhile. I also have Crohn's so the output is not formed and it's very often. Most people with Crohn's can not irrigate.
BadBagGirl
Crohn's Disease, Colostomy due to cancer and I make darned good dill pickles.


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 2/4/2009 1:05 PM (GMT -6)   
Thanks for the info...so a colostomy can have the "more liquid" output an ileo does...I didn't realize that. Thanks:)

badbaggirl
Regular Member


Date Joined Jul 2007
Total Posts : 275
   Posted 2/4/2009 3:09 PM (GMT -6)   
I THINK most people that have colostomies do have more formed output. I didn't get mine because of my Crohn's but to remove the cancer (but it does happen that anal cancer is more common with Crohn's). Hate to say it, but I wish they would have just done an ileo because I still have Crohn's. I feel another thread coming because I don't know if this helps Lynne. Infact, I will start another so she can get her answers or support.
BadBagGirl
Crohn's Disease, Colostomy due to cancer and I make darned good dill pickles.


lynneann222
New Member


Date Joined Feb 2009
Total Posts : 4
   Posted 2/4/2009 6:28 PM (GMT -6)   
First of all, I want to thank all of you for your answers and support. It means so much to know I'm not the only one with these problems. I also want to add that I'm new to the computer thing, and have never been a part of a forum, so you may need to bear with my computer screw-ups. And no, vette, I'm not going with Jane Fonda, although I do feel like I know her from those bun-busting sweatin' to the 80's videos. As for the products I have been using, I've used quite a variety trying to find the perfect thing. I've used the Eakin Seals, the Hollister Adapt rings, and Exuderm OdorSheild, Stoma and Nystatin powers, and NoSting wipes. I've tried many different bags, mostly Hollister, and am most recently using one with an oval shape, and that seems to be a good change. I tried a tip that I learned from a different thread, and that is to not bathe with oils or lotiony soaps. It didn't occur to me that it would make a difference, but it makes sense. I also have adopted the KISS method, Keep It Simple Stupid, another tip that I learned from this site, and so far I've gotten almost 24 hours out of it now!! Vette, I haven't had any convex inserts, but I do have skin imperfections around the stoma because I have Neurofibromas on my skin all over my body, and to say the least they have been less than forgiving with my colostomy. They get sore and sometimes bleed, and I thought that the Eakin Seals would be great but they haven't seemed to help so far. I also have a bulge on the upper right side which makes it even more difficult for me to find the best way to seal things up. Do you use regular waterproof tape? Or is it a medical supply I can get? I'm not an athlete, but I have always had an active lifestyle and this thing is really slowing me down. I can't focus in healing my cancer from within when I have to deal with this colostomy. I'm a nurse, so the care and medical aspect is not new, and I know there must be a way to make it easier. It's so frusterating to have something in my way.
I can't express to you all how much this means to me. My daughter found this site for me and I find it to be a life saver. Thank you all very much for your time, advise, and support, and I would love to be able to do the same for anyone also.
Lynne

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 2/4/2009 7:00 PM (GMT -6)   

Lynne--have you thought about using duoderm?  That, with a convex wafer?  Just thinking out loud...but it might help your skin situation...

I love the K.I.S.S Method!!  I never called it that before idea


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 2/4/2009 9:00 PM (GMT -6)   

Lynne,

I love the K..I.S.S. method too!!!!  I will remember that for the future too!

The only other advice I can give is also try the convex inserts with your appliance.  After many years of K.I.S.S., I had to add the convex inserts and the Eakin Seals, and I am back up to 7 days.

The only other thing that I can suggest is that you might want to post your Step by Step process and products used, even down to the type of soap or papertowels, or whatever.  Maybe one of us can catch something.

Thanks for ... paying it forward.   That's what we are all here for.  Maybe your experiences can help others. 

 


Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


vette guy
Veteran Member


Date Joined Nov 2006
Total Posts : 650
   Posted 2/5/2009 12:42 AM (GMT -6)   
Hi Lynne,
 
I use Hy Tape, but there are many others that work well too. There's silicone on the adhesive side of the tape, so it is rather mild for your skin. Also, all of the responses here have been spot on! It's just that things that work well for some don't necessarily work well for others, and vice versa. You'll have to be the best judge!

lynneann222
New Member


Date Joined Feb 2009
Total Posts : 4
   Posted 2/5/2009 8:41 PM (GMT -6)   
thanks everyone. I have a lot of great ideas to work withone thing for sure--the leaky colostomy distracts me from the ovarian cancer!

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 2/5/2009 9:34 PM (GMT -6)   
the adhesive wipes and prep can cause problems too, they can cut wear time.
I use tape but i just use regular medical tape i order it in bulk i like the 3m kind best.
although i dont use mine to keep stuff in.
you know the sure seal rings might help you at least if it leaked it would keep it in until you could get it changed.
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