Help needed for husband's persistent stoma rash - desperate for advice!

Hi, Sunny D.

Could you give a little bit more information on two things you mentioned? What is a release spray with vitamin E? What does it do? And I'm especially curious about your suggestion to get that Wenis some sun. Are you talking about actually going outside bagless? What's the purpose of that? I've never heard anyone bring that up before and I'm really interested.

Thanks.

Lalu

Hi, just a thought which might help. My skin was very sore and I had a rash. My stoma nurse checked for bugs and didn't find any. She told me to try taking antihistamines (hay fever tabs). It cleared up in no time.

Hi, I can't help you with the rash issue but I can help you with the insurance issue. My health insurance won't cover ostomy supplies either. My husband found a supply place that has ostomy supplies for dirt cheap. It's called Osto Group. It's a place where people from all over the world donate supplies that they no longer use or need. They have pouches, flanges, accessories, and more. I bought a box of 30 pouches for only $15.00, normally they cost about $80.00. They don't always have the exact brands you're looking for. But it's worth checking out.
www.ostogroup.org I hope your husband's rash heals. That sounds miserable to deal with.
Good luck, Donna

As to stoma care problems. Please note the following information from experience.
1. Do not shave hair around stoma. Shaving creates an irritant and opens up skin to bacteria. Just keep pubic hair trimmed with a small clean cosmetic scissors.

2. Keep the stoma clean with a mixture of 50% vinegar and 50% water. Gently clean stoma area with this mixture with a soft gauze pad and dry with a hair dryer.

3. Hold hair dryer at least 12 inches away from stoma on medium heat.

Good luck.

Could be an allergy to the adhesive, if you can, it would be worth trying another brand.

Thank you everyone for all the comments and suggestions. I am overwhelmed and have to read through everything a few times to comprehend everything and decide how best to make some changes.

Our experience on the whole has been good, except for feeling like we are "outcasts" for not having insurance. I have never been without insurance before, ever, until this year and only for 5 months, so it figures we would have a major occurrence like this.

Just to answer some of the questions you have all asked:

My husband's surgeon is really good, though he is Indian and we have a hard time understanding him. The only issue is he has never one time looked at the stoma since the operation. EVER - not even on all the check-ups to look at the incision. So getting help or guidance from him is out of the question. Our primary doctor is hesitant to treat my hubby because it's not his field of expertise, so that avenue is out. As for the wound/ostomy nurse, she is great, when you can get her on the phone. That's who my hubby saw 2 weeks ago and she diagnosed him with the fungus and sent him on his way. So whether it's because we have no insurance, or no one knows how exactly to treat him, we are not getting much help.

I have called my insurance company and tried to get them to cover the products we are using. They answered emphatically NO and I was told it would be considered fraud if I even tried to get coverage. The only thing covered so far during this entire process was the prescription powder. Currently, on top of all the expenses from the products, I am having to go through charity care for all the medical bills which right now are close to 150k. Plus, we have the reversal surgery scheduled for Nov. 10th, which will also NOT be covered under insurance - that preexisting condition clause again. So another surgery and hospital stay is looming on our credit report in the near future.

I REALLY appreciate all the suggestions, and will be trying some of those solutions tonight and will let you all know. Right now if I had any money left over, I would buy stock in 3M since we are going through rolls and rolls of tape constantly.

I know there are people that are having worse experiences than my and my hubby, but sometimes it is so frustrating, all you want to do is cry. I am so glad I found this site and all of you have been so wonderful. I have been a "lurker" for a few months now, but am so appreciative for the support. I will let you all know how we make out!!

Thank you soooo much

Sue

Wow - I just read this and it is the direct opposite of what our wound/ostomy nurse said. She told me the fungus was caused because I did not shave around the stoma. From not shaving, bacteria was caught in the follicles and caused the fungus. I am supposed to shave up to and around the stoma every time we change the bag. And let me add how nerve-wracking it is to have to shave so close to the stoma. I have a nervous breakdown every time.

I wonder why she would tell me to shave? See why I am so confused.......

Hi Sue,
I'm sorry to hear you've been through a lot. I cannot suggest anything more than what had been said, however your husband could also try 'LaVera' Barrier Cream (order code: 3301) which may help the skin rash. Apply the cream after shower or clean the stoma but before putting a new flange. Apply the cream on the skin around the stoma, leave it for 10-30 minutes, then wipe off the remaining using a dry wipe/towel.
Good luck and all the best,
Jo

When you shave - use an electric (battery) razor only - use the flip-out trimmer only - very light pressure if any. It is not necessary to have a close shave, which will only irritate the skin. In the shower is best - water tends to lubricate the skin. Shaving close to the stoma is easy. Application of Domeboro after drying is a sound practice as far as I know and is simple and effective. All these lotions and stuff they sell are costly and not needed. Never use any heated blow dryer - not needed - this can cause rashes.

Hello, after reading your post I wanted to add that I also have had major problems and I have had my colostomy for 2 years. I had surgery in Florida, and as soon as I could travel, I came back up north to receive my chemo. I have had two surgeries on the area around the stoma, one for granuloma which caused me such pain I couldn't stand it anymore. Well, 8 months later another area was raw and bleeding, so another operation to remove the skin around the stoma that is causing so much pain. Well, I am still bleeding with lots of pain and have finally been sent to an ET nurse for help. These stoma problems can go on and on, especially if you tend to grow granulomas. I struggle with this all the time and my bag hangs 6 inches down my leg, so you can imagine how horrible this is for me. Well, just wanted to let everyone know others have problems with rashes and growths and you just have to be lucky to get the right help.

I just want to thank everyone so much!!! The rash is gone. I tried a lot of the suggestions everyone gave me, so I am not sure which actually did the trick, but when we changed the flange yesterday, the rash was gone. What a relief. I do know that putting the powder, blotting with the skin prep and repeating that once again created that barrier before the flange went on and prevented the rash from oozing and letting the flange detach, which has been our biggest problem. We even managed to go camping again this past weekend in our RV with our camping group and all went well with the flange and stoma. No issues at all, and we got the full 4 days of camping without having to change the flange or use tape. It was stuck good!!! Now we hope that the rash is gone for good and we begin our countdown to the reversal on Nov. 10th.

Thank you again to everyone, it helped us both out so much, and I didn't feel so lost trying to handle this.

Sue

First of all, insurances cannot deny preexisting problems anymore. Second, wash and clean around the area well, dry it, apply the antibiotic powder, then the stoma powder and spray. Apply a ring around the pouch opening, press it down well, leaving more of it showing through the hole where the most damage is. Apply your appliance and keep your hand on it to warm the adhesive. When the adhesive is adhered, then meticulously remove the tape starting at the bottom, smoothing it out as you go. There is 3M cloth tape you can get that you can tear off and place around the pouch, hopefully preventing leakage. I hope this works for you. It helped me.

Hi Jakie,

I live in NJ and I attend a support group at Overlook Hospital in Summit, NJ. The next meeting is on May 8th from 2-3 p.m. in the Medical Arts II Building. The contact person is Stephanie D'Andrea, RN. The telephone number is: 908-522-5900. This group meets every other month. Hopefully, you will be able to make one of these meetings with your husband.
It is very informational and the support is noted.

I usually use Adapt Stoma Powder for a rash. You put it around the stoma and then wipe off excess powder. Do not put on Stoma!!!! It works very nicely when I see a rash (blood vessels) and it goes away very quickly. The product is by Hollister.

Hopefully, this information will help you.

Sincerely,

Catherine

I live in Illinois. I have a support group here but none of their problems seem to apply to me. Also, I didn't know that you should not put powder on the stoma. Thanks for the info. Lately, I have been having some bleeding. I need to check with someone about that. I thought I was getting a blockage also, but it seems to have slowly cleared up. I try to be very careful about what I eat and how much. My opening is in the lower right corner, so I cut out a little groove in the pouch. Maybe that is causing irritation and causing the bleeding. Thank you for getting back to me.

Try the stoma care product (LaVera - Barrier Cream), it contains lavender and aloe vera for your skin rash after shower, and leave it for 10 to 20 minutes then wipe out with dry wipes before applying your flange/pouch.

Powder is supposed to be put at the edge (between stoma and flange) not on the stoma.

I can eat almost everything now, however, you need to start with a small amount and gradually build up (re-train your stoma tolerance) to a normal portion.

Hope it helps.

Oh dear. I had the same problem as your husband...diverticulosis. Even while in the hospital, a stoma specialist visited me every day to teach me and other patients the ins and outs of stoma care. When I left the hospital, wound care nurses came to my home and dealt with all the problems you mentioned. When I felt better, I went to them. The same was true after my reversal. All I can say is you and others with the same difficulties should move up here to Canada. All the ostomy supplies are covered and delivered to your door.

I used to have a rash because I am allergic to the glue used in almost all wafers. The dermatologist prescribed me a nasal spray called mometasone furoate, also known as Nasonex.

My routine is to take the bag off, clean everything thoroughly with water. Sometimes I use a glue removal wipe, followed by loads of water.

Spray on the Nasonex and let it dry. Use Hollister powder around the ostomy and remove excess powder. Place the paste ring, followed by the bag. (I use a one-piece system) After that, I use some tape to secure certain places because of scar tissue.

Within 7 days, the rash is gone. After that, I use it every other day and use a common ostomy protective barrier cream.