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Lakelyn
New Member


Date Joined Nov 2009
Total Posts : 3
   Posted 11/22/2009 3:36 PM (GMT -7)   
Hello...I've just joined HealingWell.com. I've never been in a chat room before but I have some problems that I thought someone could help me with. I had colon cancer and radiation in 1986 and have been cancer-free ever since. I started having problems, as a result of the radiation, about 10 years ago with blockages. One of my ureters started breaking down and I had stents placed to keep it open. I got my colostomy in May 2006 as a result of a colovesical fistula, (probably all spelled wrong)  and bi-lateral nephrostomies in August. I made out pretty well with all of that....fewer blockages until I had a bowel rupture in January, 2008. I received an ill-placed ileostomy through a 9+ hour emergency surgery and then the fun really began. I rarely have blockages now and when I do, they don't last long....usually a day is the longest. My diet has changed for the better. I can eat most anything.....even steak. I do stay away from really spicy foods. My stoma is flat to concave and is about 1-1/4" long and 1/2" wide. It retracts up to an inch while trying to eliminate. Needless to say, it is hard to find a barrier to fit, much less stay on. I used to be able to keep one on sometimes for 3 days. Then it went to 2 days and now, just one day, if I'm lucky. The acid just disolves the glue rings and the barriers and in the process, leaks out under it and burns the skin. Sometimes the skin is so raw, it bleeds. I've spoken with nurses with the Hollister company and tried the things they've told me and nothing works. Does anyone have a problem even close or have any suggestions.  I really need and would appreciate some help.
 
Lakelyn

privey
Regular Member


Date Joined Oct 2009
Total Posts : 453
   Posted 11/22/2009 6:57 PM (GMT -7)   
Lakelyn,
I read your post a little while ago and thought someone with more experience would answer you. My ostomy is new as of the end of June '09 so you could probably tell me a thing or two. I can tell you what I've done recently and mine is lasting 3-4 days. I use the moldable convatec wafer, you can stretch it when you put it on and it will snug up to the stoma, I also use an eakin seal that I put on my wafer, and then I add paste to the outer edge of the wafer. I am very irritated right now and I think it is from the paste but when I used the powder to help with the irritation my wafers weren't lasting more than 24 hours so when I changed on Friday morning I used the smith nephew skin barrier and no powder and the wafer is still on. I also am on another web site C3Life.com and one of the ladies on there told me yesterday to put the powder on and then the skin barrier to make kind of a paste so if I'm not better I will try that.
Do you have a WOCN (ostomy nurse) I didn't have one and everyone said I should find one so I did and by the time we hooked up these wise folks that I've talked to on the website had me squared off okay so I know if my info doesn't help you someone else probably can. Since you've never been on a site like this I didn't want you to go too long without some type of response.

Cathy

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 11/22/2009 8:29 PM (GMT -7)   
Lakelyn

See my suggestions on the thread: "help me help my friend please."

Best Wishes, Rosemary

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 11/23/2009 4:46 AM (GMT -7)   
Lakelyn,

Welcome to Healing Well! I'm glad you found us. :-)

Wow, you sure have been through a lot! I'm sorry to hear that you're having problems with leaks. Have you tried a convex wafer with an Eakin Seal? I had a temporary ostomy last summer after my small intestine perforated. The stoma pointed downward causing daily leaks, until I found a system that worked for me. I used a Coloplast Assura Extended Wear convex wafer with an Eakin Seal, which gave me about 4 days wear time. Luckily, that ostomy was only temporary. My permanent one sticks out just fine.

I have heard of people having their stomas "fixed" so they function better. If this continues to be a problem, is that option for you?

Take care,
Cecilia
Dx'd Crohn's in '99 at age 28. Proctocolectomy and ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 11/23/2009 5:08 AM (GMT -7)   
I would agree with convextiy and an Eakin Seal...but there is only so much they can do to help. I would see your CR Surgeon about a possible revision, you shouldn't have to live in pain!

Lakelyn
New Member


Date Joined Nov 2009
Total Posts : 3
   Posted 11/24/2009 7:59 PM (GMT -7)   
Thank you so much....all of you....for getting back to me. Cathy, I thought I had been through quite a bit but my goodness, you have really been through a lot. My husband found some non-irritating barrier wipes on the Internet and I think they might be the same kind you are using. I'm going to try to use them without the powder when they get here. I don't know much about any products other than Hollister. I used them for my first stoma and had no trouble, but then I had a text book stoma too. This one with the ileostomy is a nightmare. I used to get 3 days and wasn't so irritated but now I do well to go 24 days and the cleanup and barrier wipes are so painful. Cecilia, I'm going to look into the seals you were telling me about. Also, I have considered having reconstructive surgery to make a better stoma. I see my CR doctor Dec. 15th and see what he says. I'm 73 and I sure hate to go through that again though. I spent 47 days in the hospital beginning Jan. 9, 2008, 12 of them in ICU (they didn't think I'd make it).

I don't derive a lot of nutrional and liquid benefit from what I eat and drink so I travel an hour each way, to the hospital (ambulatory infusion) where I spend 6 hours a day, 3 days a week receiving IV infusion of liquid w/potassium, magnesium and calcium. We tried 2 days, 2 different times and ended up in the hospital both times. My nurses are the absolute best....like family. I've been going there since I got out of the hospital last year. Unfortunately, they aren't ostomy nurses.

I look forward to any suggestions anyone can give me and if I can be of any help to anyone, I definitely would be glad for the opportunity.

I hope you all have a wonderful Thanksgiving Day!

Lakelyn

privey
Regular Member


Date Joined Oct 2009
Total Posts : 453
   Posted 11/24/2009 8:47 PM (GMT -7)   
Lakelyn,
You have a wonderful Thanksgiving too. I hope things have gotten better for you this week. I know how discouraging it is to have the leaks and nobody to turn to. Do you have a home health agency that could do you IV infusions? When I came home last year with my back wound open I had daily infusions of an antibiotic and home health could provide that. It has to be aweful to drive so far for such a long time 3 days a week.

Keep up posted on how you are getting along okay?
Cathy

Lakelyn
New Member


Date Joined Nov 2009
Total Posts : 3
   Posted 11/24/2009 9:04 PM (GMT -7)   
Hi Cathy....I did have home health for a while but had trouble getting the right ostomy supplies. They had to get them through the hospital and the hospital wouldn't order the ones I needed. I have trouble understanding that because they are all covered through medicare and my supplementa insurance. When I went to the health center last week for my H1N1 vac., we talked about it and the nurse just happened to be one of my neighbors. She is going to check on things. I would miss my friends at the hospital but it would really be wonderful to do this while I sleep. I had TPN at home for a month back in 2004. I took it over a 12 hour period, from 7 p.m. to 7 a.m. 5 in the morning comes pretty early to so I will say goodnight. I sure hope you are doing okay too.

Lakelyn
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