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Husband Has A Stoma Rash And I Need Help Please!!!

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Posted by suefelli, on Sun Oct 09, 2011 8:12 pm
Hi everyone.  My name is Sue and I live in NJ.  My husband had a temporary colostomy August 2nd due to a ruptured intestine and bad abscess from a bad diverticulitis attack.  Unfortunately at the time, we did not have health insurance, so when he was leaving the hospital, we received a quick 5 minute lesson on stoma care, and sent home.  The doctor would not approve a home health care nurse to come check on us, so we have been "winging" it on our own.  For the first 6 weeks, all was as well as can be expected.  3 weeks ago - the "RASH" came to visit and has been here ever since.

After a visit to the wound nurse who we saw in the hospital, he was told it was a fungal rash from not shaving around the stoma.  Unfortunately I was not able to go to the doctor with him, so I did not get to hear all the details.  He was prescribed a powder to treat the rash and sent on his way.  The first time we put the powder on that night, it was a nightmare.  We put the antibiotic powder, then a barrier powder the nurse said we should have been using the whole time, but neglected to tell us in the hospital.  Next was the skin prep followed by the skin tac glue.  Put the flange on, sat there a minute, sat up and the whole thing fell off.  We started over, left the antibiotic powder around the stoma for an hour, wiped it off, put the skin prep and skin tac on and the flange stuck well.  After the second application of the antibiotic powder, all was better.  Until yesterday, the "RASH" is back again.  It oozes and we can not get the flange to stick.  Its so frustrating, and expensive.  We do have health insurance now, but it will not cover the flanges, bags, paste, etc...since it is pre-existing.  So everytime we go through a flange, it is expensive.

Does anyone have any suggestions since I am obviously doing something wrong?  It is so frustrating to do the whole process, and have it fail time after time.  Are there other steps that I do not know about, since we really have no idea what we are supposed to do for the stoma care?  Please help.

Thank you,

Sue
 
Reply by StarUK, on Mon Oct 10, 2011 3:32 pm
Bless you sounds like your going through hell, firstly can i say you aren't doing anything wrong, except helping your husband the best way you can and with very little support by the sounds of it.
I think you need to find out what this rash is for a start, you say its oozing i would think your doctor should be swabbing it to see if it grows anything. Its very hard to use an antibiotic topically if this area is always being wet. I live in the UK and the system is different so i feel unable to help to much but i think you need more support and there must be a stoma group near you. You could do with some support too. With me it was trial and error which i realise is a very expensive exercise when your paying for everything.

Anyway we are here to help, feel free to yell and i hope you get it sorted out

Trish
 
Reply by funnygurl, on Mon Oct 10, 2011 5:12 pm
I also sometimes have this problem.  I use an antibiotic powder and then spray on a skin protector called "cavilon".  I use a hair dryer to dry it before using an adhesive paste and the flange.  I have also used mylanta painted on the rash before the skin prep and flange or calamine lotion.  Unfortunately, not all hospitals prepare patients as well as they should.  I had access to a nurse who specialized in ostomies and also got a lot of help from a chat room at www.ostomyland.org.  One of the frequent chatters there is a retired ostomy nurse and very helpful.
 
Reply by ambies, on Mon Oct 10, 2011 5:54 pm
Hi Sue,

I really feel for you  its a situation like going round in circles,like the others say you need  more support,and help with hubbys skin,i too agree  your doctor should be swabbing the skin. Must be so hard paying for the flanges,i know what its like when things dont stick for a reason you tend to get through more and more flanges. I do hope you get him sorted and that you get some support.

tc ambies ..x
 
Reply by peaches, on Mon Oct 10, 2011 6:41 pm
Sue, the area should be clean (Baby Wipes are good) and dry. 1st skin prep, then anti-fungal powder. Put on bag and if he uses a belt, just have him wear it for 3 or 4 hours to make sure the bag is set. Did the nurse measure him for the right size opening for his stoma? The stoma weeps or drains all the time. the opening is to fit around the stoma and not on it. Get a transparent bag so you can see what is going on. A great bag that I use is Coloplast #15623. Its all ready equipped for a belt. This bag is to be cut to your size of your stoma. If his skin is broke out, red, raw, try a skin prep with no alcohol because with alcohol burns like a ***. Cavilon 3M no sting barrier film is a good one. I go on line and go right to the coloplast web site. Ask for samples and they will send them to you. I wish you the best of luck. Let me know if I can help in any way.

'peaches'
 
Reply by Past Member, on Mon Oct 10, 2011 6:46 pm
Sue;

Sorry, husband is having so much trouble...Your procedures seem to be wrong...First the prescribed powder is probably: Nystatin...Fantastic!!!!
Next, area needs to be dry before putting on "light" powdering...Do NOT wipe with anything.
Instead, use 3M's Caviklon Spray or Nexcare's No Sting Liquid Bandage...You can buy on Amazon.com.
Finally, let dry for 30-40 seconds or use hair dryer on low heat...THEN APPLY THE FLANGE. Cover it with your warm hand and/or use hair dryer for 15 seconds...
Go about your life and enjoy. Rash willclear up in about 4 changes...
 
Reply by markndeb20, on Mon Oct 10, 2011 10:26 pm
Hi, Sue.  I was shaking my head while I read your note.  The insurance is denying the ostomy products because of pre-existing condition!?!?!?!?  My guy (now 3 yrs old) was born without most of his intestine and has a permanent colostomy.  We have been through 3 different insurance companies (husband job changes insurance providers frequently) and -always- get coverage!  For your insurance, please consider calling and asking for a case manager to help you get the coverage you should receive.  Pre-existing condition... blech on them!!!!!!!!!!  As for your rash trials... Tour Guide said it best!  Here is what we do when our guy has irritation around his pooper..... (1) clean everything gently and let dry  (2) sprinkle A LITTLE stoma powder around the stoma on the irritated skin (just a thin powder layer).... (3)  dab a moist skin barrier wipe over ALL the powder and LET DRY!  Wafers do not stick to the powder!  (4) Apply your skin paste and/or your wafer... and your bag and a little heat from your hand (or a hand dryer).  Do this each time you change the bag and his skin should be healed in a few changes.  We have used Convatec, Hollister and Coloplast products.  If you contact these companies and tell them of your needs, they will send you samples of most everything!  Also... have you considered Medicare?  Because of our guy's medical needs, we receive Medicaid.... but it is a BEAR to get going... and keep it goin!  But... it is worth it for the coverage peace of mind.  Best of luck to you!!!!!!!!!  -Ryan's mommy
 
Reply by Past Member, on Mon Oct 10, 2011 11:13 pm
I am so sorry for you and your husband. I know exactly what you are going thru because I have the same condition from a ruptured colon from diverticulitis. I am currently still wide open with just a mesh and skin graph covering my abdomen while I wait for surgery to close me back up and I am dealing with the same issues with little or no help on how to care for my stoma so I have learned from trial and error. So far you are getting some very good advice. I know that if your husband is a veteran he can get Medical treatment for his problem now. I had no insurance when I ruptured and my friend drove me to the V.A. Hospital and they took great care of me for the entire 4 months I was in the hospital. Perhaps you can supplement with Medicare/Medical as well. I am still having issues with care of my stoma as well. I suggest that cleaning the area well the drying with a hair dryer is good and to apply the past both around the base of the stoma and around the appliance base too  the allow the adhesive to set for a couple of minutes and before putting the pouch on, provided you have a 2 piece appliance, and the cover the stoma with a antibacterial itch/pain ointment well. I use a surgical waterproof tape cut into 4 strips that I add on top of the edges of the band-aid like material as a additional way to secure it even more. I then attache the bag to the ring. Since doing it this way I have found I have had a lot fewer accidents with the appliance coming away from the skin. Also I recommend using the elastic belt too. Seeing how I still have to were a abdominal binder to keep the hernia in place I had to cut a slit in the binder to allow for the bag to be able to extrude from it, the binder added another layer of security for the appliance as that the binder lays ontop of the tape preventing from moving as well. If you do not need a binder you can still use a narrow one with a slit cut into it like mine to help keep the bag in place as needed. I hope that this will help you in any way.
 
Reply by Past Member, on Tue Oct 11, 2011 12:06 am
Hi, I am just wondering why anyone isn't calling their ostomy nurse with skin questions???  I have called mine so many times in this last 6 years; also have had questions that she couldn't answer, so went to the dermatologist and found out that she knows about skin, but not about pouches, another problem.
And called the ostomy nurse again and she told me to do nothing.

So, I put NOTHING on my skin; just shower and clean it and slap that pouch on with the 4" Hollister Adapt Barrier.   Also, after having talked to Coloplast whose pouch product I use, they didn't really know what I should do, so I decided on my own to fold over the top of my pouch so it wouldn't touch my skin, and VOILA!!!!!!!!!!!!!!!   no more skin issues for a couple of years.....

This has been an ongoing process, but just do your homework kids, OK????

Linda
 
Reply by Past Member, on Tue Oct 11, 2011 12:22 am
to view stoma use 4.5 inch dia concave mirror -- drug store
to change pouch --shower soap and water -- remove pouch  --
shower area no soap
pat dry tissue works well
apply domeboro solution on cotton ball to pouch area
blow dry (cool) --- apply pouch
this will prevent and cure red rashes and folliculitis ( puss heads )



domeboro  from drug store -- make 20:1 solution
  domeboro is recommended for rashes and folliculitis
 
Reply by octobersunrise, on Tue Oct 11, 2011 12:31 am
Hi Sue,

I know just what you are going through.  I had a bad rash for two weeks as a result of too many antibiotics to treat a super bug I had last month.  Antibiotics kill the good bacteria as well as the bad and can cause a yeast infection.  That's what mine was...a yeast infection.

I am so sorry you are being treated poorly buy your insurance company.  Bags can be costly if you are having a lot of adhering failures.  Before Medicare, I paid for everything out of pocket, and bought from Best Buy Medical Supply.  They're a bit cheaper than the other providers.

I was just at my Ostomy Physician's Assistant three days ago.  My infection is almost healed due to "crusting".  He says the best way to treat all skin infections is through "crusting".  Now if your husband's infection is seriously oozing, your doctor may need to prescribe the right oral antibiotic in combination with skin treatment.  My GI took one look at my infection and said, "Oh, I don't do skin problems.  I'll have to refer you."  I am only going to address how to get the bag to stay on for the longest period of time, because every time you pull that bag off, the new skin gets torn off and the area remains raw.

You clean and dry the area well with Ivory soap (nothing with oils or lanolin).  Then lightly dust on Nystantin (it is expensive, $33.00 for a small bottle, so I hope your insurance company will pay for it), then dab your skin barrier over the Nystantin, and repeat this "layering" 3-4 times, ending with the skin barrier.  Cut your stoma opening to the size of his stoma.  At this stage in your husband's healing, his stoma is probably not very protuberant. If he still has a little bit of an "innie" or his stoma is kind of flush with his tummy, convex bags work best, because when he bends at the waist, they don't pull away, leaving tiny poo gaps.

Another Ostomate on this site told me to try very hard to keep the same flange or baseplate on for at least 4-5 days. A poorly fitting pouch is what causes infections to become long-term. Remeasure your husband's stoma regularly as his surgery is pretty recent and his stoma is still shrinking.  Most hospitals have an ostomy nurse that you can talk to over the phone.  They are very helpful when it comes to recommending appliances.  They ask you a lot of questions like are your stools watery or firm, how much you weight, etc.  The one I spoke with gave me the three best products for my shape and stools from each company and their phone numbers.  She told me to call them all and have them send me samples.  I was flooded with different styles within 48 hours.  I really liked Coloplast's Sensura 1 piece drainable with the convex baseplate in transparent so I could see what was going on. When I'm not infected and eating fiber (which your husband has to avoid for the first 6 weeks) I like Convatec's 411203 and 411204.  They are simple and basic and easy to remove and apply.  It was hard to keep the same baseplate on for more than two days.  I change every 2-3 days, but when your skin is infected it has to have a chance to start healing and with too frequent changes, it re-tears.  As long as no poop is getting beneath the flange/baseplate, the infected area remains safe.

Once you've "crusted" really well, warm the appliance with a hair dryer on low until it feels somewhat malleable.  If you are using drainable bags, be careful not to heat the pouch itself.   Then have your husband stand up, and "roll" your appliance on in an upward motion from the bottom up.  If you put it on while lying down, when he stands up, it can leave tiny gaps in the seal.  Then have him lay down and keep his hand over the pouch for at least 3 minutes.  The heat from his hand really helps the glue adhere.  Many people like the Eakin Cohesive Seals around their stoma before placing the appliance on.  For whatever reason, they don't work for me.  Just remember to do whatever you need to do to get the tightest seal possible.

I hope this has helped some.  There are lots of products out there and the trick is finding the right one(s) for your husband's needs.  And asking for help just like you did here.  You have to be a bit eclectic and pull from everyone's recommendations until you get just the right combination for your husband.  It will get better.  Know that.  For the first 4 months after my surgery, I was hung out to dry, too.  The original ostomy nurse popped in for about 5 minutes once a week.  I learned everything on my own until I joined an ostomy group that met at the hospital monthly.  Lots of good hints from those guys.  Lots of horror stories, too, so when I got the basics down, I stopped going.  When you hear what could happen on an ongoing basis, it doesn't really help.  Experiment until you find what works best for your husband.  Sure it will take a little time.  But you have each other and that's half the battle.
 
Reply by Past Member, on Tue Oct 11, 2011 12:35 am
i forgot in shower electric shave-- flip out only add to domeboro post -- never blow dry with
any heat cool only
cymed pouch works great
 
Reply by Past Member, on Tue Oct 11, 2011 1:36 am
I have to repeat what one of the replies said about contacting HOLLISTER or COLOPLAST directly (they both have 1-800#--sorry, I'm Cdn. so don't know what your # would be).  I'd try looking online first to see what you can find, that you might want to try, etc. before you phone.

They will send you various types of bags to try until you find the correct one for your stoma.  AND, as your stoma heals, it may change size and/or shape.  I went through various bags until I found one that agreed with my body type (I tend to have very little length in my body between my stoma & crotch so most of the bags hung down too far for comfort.  They -do- have one smaller version which I now wear.  They will also give you a free belt, if you request one!!!!  


They will also send you various powders, or other 'parts' as mentioned by others on this site.  Ask for anything you can think of.  You never know what you will end up with.

I wish I'd known about THIS SITE when I first had my surgery!!!!!!!  I might've save myself a lot of trouble trying various things.

ALSO -- do you not have free access to an OSTOMY NURSE at your local hospital.  (ETT N urse)

Good Luck!!!
 
Reply by Lalu, on Tue Oct 11, 2011 3:53 am
Hi, Sue.

Like everyone else here, I'm so sorry about everything the two of you are going through.  I used to think I was destined to never leave the house again and to wake up in major puddles of poo a few times a week, spending my days in a daze since I wasn't getting any sleep.  It took a long time, but very slowly I got to the point where I can wear the same barrier a week or even a week and a half, just changing the pouch every few days. Please let your husband know that he may not think so now, but it will get better.

As you can see, everyone's got their own way of doing things, so you have lots of ideas to try out.  Different people also have different areas in which we can help.  I know very little about dealing with rashes under the barrier, except to take Benedryl, but since I had no insurance until recently and no money, out of necessity, my husband and I found products at better prices than you'll find at retail sellers.  

Before I throw my own ideas into the ring, I'd like to tell you how much I appreciate how involved you are with this process; that you see it as a something for the two of you to handle, not as your husband's problem.  My husband was like you and I could never tell him enough how much I appreciated him and all he did for me, including going to support group meetings while I was still hospitalized.  After being on this site a while, I've come to realize that he was the exception, as are you.  You're a rare gem and after things calm down for you, and they will, take a little time to read some of the blogs, Forum posts and responses people have written.  You'll be amazed to see how different you are from so many other spouses of Ostomates - somebody's just got to come up with a better word than Ostomate.

One place to get ostomy supplies for a (relatively) low cost is at Ostogroup.  Their web site is: http://www.ostogroup.org .  They sell products only to people with no insurance, or people whose insurance doesn't cover ostomy products.  I was originally told there's no charge for products, just shipping costs, but that's not the case.  Supposedly, their prices are 15% of the retail price (sometimes it seems much lower, sometimes a little higher), plus they charge shipping and handling, which, when I've paid attention, I've seen is generally twice the actual cost of postage.  When I first started looking on their site, I thought their prices were high, but that was before I learned how much the stuff costs retail.  You or your husband may also want to check out Ebay and Craigslist.  We once got a bunch of stuff for free from someone in the area who had passed away and his family just wanted to see his stuff get used by someone who needed it.  Using Ostogroup, Ebay and Craigslist should put you well on your way to getting what you need, although even among those three sites, you may have to substitute some items for your first choice.  As a last resort, if you need to go retail, I found that Direct Buy Medical has the best retail prices by far.  As I understand it, since they don't handle Medicare customers, they don't need to artificially inflate their prices to make up for their low revenue from Medicare.  Their web site address is: http://medical-supplies.net  and their phone number is (800) 860-8612.  Their phone calls get routed according to region and I always spoke with the same customer service rep.  He's not only very friendly, but knows the products, which gives him the ability to be extra helpful.  As I just got Medicare, I unfortunately can't use that company anymore.  There's a flat $8.95 for shipping, unless the order is at least $100.00, in which case, shipping's free.

I also left the hospital with little information, although it sounds like they at least gave us more of a shot than you got.  One problem is it appears that they have a set of products they use for new ostomy patients, instead of tailoring the products to the patient and his or her specific set of circumstances.  Instead of the paste, which is what we were given in the hospital, I started using barrier rings, which are so much easier to use and doesn't make a mess like the paste does.  They're rings that come in a 2 inch and 4 inch size.  I use the 2 inch rings and they can be manipulated by stretching or cutting, and it sticks to itself, so you can make it fit even an oddly shaped stoma.  Hollister makes one under the name Adapt Barrier Rings and Convatec makes what they call Eakin Seals.  By now, probably all the different companies make them.  If your husband has an uneven surface, he can always use a little of the paste in any indentations.

Good luck sorting through all the information you've already been given and will continue to get on this site.  People here are unbelievably helpful and there doesn't seem to be any topic that's off-limits.  Best of luck to the two of you and congratulations to your husband for making what has to be one of the wisest choices of his life when he married you.

Lalu
 
Reply by sunnydisposition., on Tue Oct 11, 2011 5:36 am
hi sue, make sure he uses a relese spray with vitimin e, also can he get the stoma in the sun? short spells only a bit of sunlight does the word of good. make sure he does not use harsh soaps , just warm water wrks for me . good luck  x
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