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New ostomate with no access to ostomy nurse- please help!

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Posted 9/4/2014 10:03 PM (GMT 0)
First of all, hello everyone :-)   Since my emergency ileostomy surgery 6 weeks ago, I have read several tips on Healing Well forums and am very grateful for all of them.  Unfortunately, due to my remote location, I have not had any access to an ostomy nurse or anyone with ostomy experience.  As such, my husband and I have been navigating through this mess alone.  I could really use some insight and advice, as I am averaging two bag changes per day.  My stoma is approximately 1.5 inches to the left of my belly button (way too close), and it is in a skin fold (or fat roll if you prefer).  The stoma itself only sticks out about a quarter inch or less; sometimes it is nearly flush to my skin.  It is a very active little thing, and it seems to like to roll on itself.  I have tried one and two piece pouches, paste, and eakin seals.  The more advice and tips you can give me, the better.  Thanks again to all of you!  God bless...

 

Posted 9/4/2014 10:45 PM (GMT 0)
Hi armywife,

I am sure someone will chime in here about convex wafers. They apparently help to push your stoma out a little bit so that you can avoid leaks. Two changes a day is going to be hard on your skin. Do everything you can to make sure your skin stays healthy. Search healingwell for friars or Polishdan for info on benzoin tincture. Works wonders for protecting skin.

In the meantime, know that it honestly does get easier and better. I wish you the best.

Kelly
Posted 9/4/2014 11:06 PM (GMT 0)
Kelly,

Thank you so much for your quick response. I will definitely order some convex wafers as soon as I can. I am sure that things will get better, since nothing can last forever, right? Meanwhile, should I be cutting the wafer to fit snuggly against the stoma, or should I leave some room for the eakin seal to turtleneck up some?

Thanks again
Becki
Posted 9/4/2014 11:36 PM (GMT 0)
Becki,

Call the manufactures and ask for FREE samples, don't buy until you find something that you like. They will also give you help over the phone with any of your questions about their products and your ostomy. Sometimes they will overnight or send the products 2-day mail if you tell them that you are in a rush.

It sounds like you need some convexity products from your favorite manufacture. When I used Coloplasts' convex wafer I didn't use the barrier ring, the ring actually made it worse for me. I used Coloplast's protective sheets under the Convex wafer and then used Coloplast's Brava Strips over top the wafer to reinforce everything and prevent leaks.

Why are you changing twice a day? Discomfort, leaks or something else? what does your skin look like? Are you using any powder?
Posted 9/5/2014 12:13 AM (GMT 0)
Thank you so much for your help, ks1905. I will see if I can get some products rushed to me.
I have been changing twice a day due to leaks and severe itching with some burning. Fortunately, the eakin seals have helped heal my skin from the absolutely terrible state it was in. Now my skin is slightly irritated but no longer weeping. I have not used any powder. Do you recommend it?
Posted 9/5/2014 12:43 AM (GMT 0)
Powder in combination with skin barrier wipes can help heal and protect skin. That technique is called "crusting". Search the forums here for posts about it. Definitely try convex wafers, and definitely use the manufacturers' customer service people as resources. They are very knowledgable and eager to help. Naturally, they will try to solve your problems with their own products, but I've found they still have useful suggestions and love giving free samples. What brand and style appliance are you using right now?
Posted 9/5/2014 1:45 AM (GMT 0)
This is a great website with lots of info:

http://www.newbieostomy.com/

Here is a list of manufacturers you can call for samples:

http://www.newbieostomy.com/product-manufacturers-and-suppliers/

When you call Convatec, everyone you speak to is a stoma nurse. They'll be happy to help you with suggestions and samples.

Wishing you lots of luck! Once you get some knowledge and experience it will get much easier!!!
Posted 9/5/2014 2:09 AM (GMT 0)

armywife1980 said...
Thank you so much for your help, ks1905. I will see if I can get some products rushed to me.
I have been changing twice a day due to leaks and severe itching with some burning. Fortunately, the eakin seals have helped heal my skin from the absolutely terrible state it was in. Now my skin is slightly irritated but no longer weeping. I have not used any powder. Do you recommend it?

You're welcome, I was asking all the same questions when I first had my ostomy but fortunately I had nurses there to help me.

Since you don't have an ostomy nurse who is local, is there a local wound nurse? The wound nurse might be able to help you with your skin irritation problems. A few weeks after my 2nd operation (loop ileo) they had to treat the skin around my ostomy site with silver nitrate because it was blistering and bleeding.

The powder didn't help me that much especially when things got really bad with my skin. The nurse treated the blisters with silver nitrate and then used the Coloplast Protective Sheets under the ostomy barrier; the sheets worked great for ME but they don't work for everyone. www.coloplast.us/brava-protective-sheet-en-us.aspx

What type of ileostomy do you have, an end ileo or loop ileo? They preform differently so you might get different advice if you identify which type you have.

Some of the itching may be from the nurve endings around the ostomy site which were effected by the surgery, that is very common.
Posted 9/5/2014 12:16 PM (GMT 0)
I think a convex wafer will help you. I have an end ileo and use the Hollister New Image 2 piece system with a barrier ring instead of paste. I was also taught to use powder around the stoma not on it. It helps with any irritated skin you may have. My stoma does not stick out much either. My Ostomy Nurse at Cleveland Clinic switched me to convex wafers about 6 weeks after my surgery. The important thing about the convex wafer she taught me is to stand up when putting it on. Fit it over your stoma with one hand and remove the adhesive tape with the other. Your stoma should stick out. Hold your hand over it to get it warm so it will adhere. I also wear an ostomy belt that attaches to the pouch, it just supports it better. I don't even feel the belt anymore. I get about 5 days out of it. You should not have to change it twice a day as that is so hard on your skin. The longer you can keep that wafer on the better for your skin. Regarding samples, a lady from Hollister called me yesterday to see how I was getting along and asked me if she could send me any samples. Also, a lot of these companies have nurses you could call and talk to. Good luck to you and I hope you find something that works for you!
Posted 9/5/2014 5:52 PM (GMT 0)
I was just like you. It was only until a stoma nurse helped me figure things out. Mine was imergent too, and my stoma nurse in the hospital wasn't any help. I came across this forum 4 months later and wish I had much sooner.

You need convexity, I did too. My abdominal incision was open, so the healing process on that wasn't supportive to any ostomy care. Before I received my new convex wafers, I actually couldn't endure it anymore and purchased a box from the nearby medical supply store. I use the moldable ones, and ordered according to size in the beginning. I was desperate, couldn't do it anymore and my skin was terrible. In the meantime for you, maybe try 2 Eakin seals and see if that will help the stoma. For the dips, if you have some paste, you can place a dollop in the fold, then Eakin (s). If you get a good hold for awhile, your skin will heal up. In the meantime for this, you could perform the crusting method...powder, barrier wipe, powder, barrier wipe. Also, order an ostomy belt to keep the wafer in a good hold during the day because of movement and the bag filling and applying weight. And....a hair dryer during your appliance change is a great help. Also, before you apply the bag (if 2 piece), apply pressure for 1/2 minutes with your fingers right around the stoma to really compress that area.

Hope today is a better day!!!! Keep us informed!
Posted 9/5/2014 5:57 PM (GMT 0)
WOW....just read your bio. I'm so sorry for all this. You did fine for 3 years, then this. I hope that you will get through this quickly. You should be OK for take down in a few months and all this will be in the past. I'm glad though you did your colectomy young.
Posted 9/6/2014 1:36 AM (GMT 0)
Thank you all so much for your help really! I have desperately needed some guidance. I did order some convatec moldable convex wafers, and should be getting them in about three days. I am a bit nervous, because I have a six hour flight in five days. YIKES! I hope these new wafers will get me through. Wish me luck!
Bania- I have started using the skin prep wipe, and I will be ordering some powder.
CarenZ- Your resources were extremely helpful. I called Convatec and was beyond elated to speak with an actual stoma nurse. Thank you SO MUCH for your guidance!
Windy City- Thank you for your kind words and giving me hope. Sometimes I think we all just need someone who has been in our shoes to give us a little lift. I fully intend when this is all said and done to use this experience to help someone else.
Buckeyecrohnie and ks1905- Thank you for your advice! I will try your suggestions.
A million thanks to you all, and I will keep you informed :)
Posted 9/6/2014 2:40 AM (GMT 0)
My husband and I was in the same boat. When my husband had emergency surgery in dec at 38, wewere lost. Even I, a nurse, didn't deal with ostomies outside of work where, the bags and wafer only were supplied.
So, this forum was a lifesaver, and I goggled ostomy supplies and got evey sample I could, my husband was having trouble with one that fit. Then I found a supplier ours was national rehab, that was very knowledgeable and helpful finding exactly what worked for him. took a couple of tries with different appliances but they would overnight samples to get exactly what we neeeded. National rehab took care of billing and contacting our doctor too. Also if something didn't work they sent us somethimg else. Very helpful
Posted 9/6/2014 2:35 PM (GMT 0)
@armywife1980 I'm so happy that I was able to help you. I've gotten so much help and support here. It makes me feel so good to know that now I can help someone too. This is the best site to get answers to your questions. I'm only 11 weeks post op and I'm pretty sure that soon you'll be helping people too!! :-)

Wishing you the best of luck on this journey!!
Posted 9/6/2014 5:06 PM (GMT 0)
CarenZ- I definitely agree with you. I am truly beyond grateful for the help and support I have gotten from this site, and although I would prefer the world to be perfectly healthy and happy, I am grateful for people who've gone thru what I'm going thru. I really hope to be helping people, as you all have helped me, and I will keep you informed on my progress as well as keeping up with others' situations. Thanks again for everything!
Posted 9/10/2014 9:13 AM (GMT 0)
Armywife, did you receive your new supplies? Are they working better for you?

Thinking about you!

Kelly
Posted 9/14/2014 5:46 PM (GMT 0)
When my husband first got his right side ileostomy in 5/2013 he was having major problems with the wafers not sticking very well. He had scars from surgery that are in the outside area of wafer causing it to gap and allowed it to come loose even with the belt. At first he used the Convatec 2 pc that would not stay adhered even while using the stoma paste and tape. We then went to Hollister 2 pc which the outside flexible bandage seemed to work better for his case. He has had a total of 4 surgeries and the area of his ostomy bulges out like a size A cup boob when he stands up. We have now moved to the Hollister 1 pc. I cut the wafer to the size hole 1-1/2" he uses and lay the bag on top of a little bedside lamp to warm up the wafer while I remove the old one and clean the area. I use the adhesive wipes to clean up the adhesive residue and then wipe dry. If there are any areas that look red or irritated I use just a little bit of the stoma powder on the reddened skin and blow off any excess then apply the stoma bag. We usually get 7 - 8 days on one bag with the other brands it was 1-3 before blow out occurred.
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