Ostomy Irritation: Seeking Advice and Support

Contact an ostomy nurse.

I am not a fan of radiation either. It has caused me so many repercussions. If I had to do it all over again, I would not have let them give it to me. I think they treat everyone, regardless of size, with the same amount. I believe I was given way too much.

That's about how mine looks. I have every kind of appliance, wafer, etc., but none has helped so I have opted to have mine revised. I'm done with waking up through the night because it has leaked or be somewhere. I have a major leak/blow out. I gave it 4 months, time to get it fixed.

A note, I had a loop colostomy since 2015 because of a reoccurring hernia. We decided to make it an end colostomy when fixing the hernia. By the way, the hernia is all gone, but never ever had a problem with wearing my appliance or worrying about leakage.

My WOC nurse had me apply a bit of nasal steroid liquid to the irritated area, allow it to dry, then use the barrier wipe and stoma powder as described in the other posts.

My skin is super sensitive and I found that Sensura Mio works for me. I never wear a bag more than 3 days as my skin needs to breathe in order to stay healthy. If I have the slightest inkling that the flange around my stoma is compromised, I change the bag. I find that a slightly convex appliance works best near my scar.

Ask for samples from different companies and protect your skin.

I developed a weeping rash under the wafer and my stoma nurse seemed to think it was a reaction to the adhesive. For a while, I used a different make of bag with vitamin E in the adhesive, and I now use a bit extra of the removal spray to make sure I completely clean all trace of adhesive from the area. That was a couple of years ago and I haven't had any problems since.

I just met with the radiation doctor yesterday. He's looking at five days a week for five weeks. Does that sound similar to what you went through?

He is still going through my charts and wants to talk to my surgeons but he's looking at targeting through my back mostly and a bit on the sides.

I'm not sure why you're getting radiation and what part of the body it's for but that's about the same as I did. I'd have to be told that the radiation was going to be the thing that saved my life in order to go through it again. Hope it all goes great for you.

Was radiation worse for you than chemo? All I have to go on is I will be more exhausted and it's like a sunburn.

The chemotherapy tore my insides up (like upset stomach wise), made me lose 35 lbs, and made me really weak. The radiation doesn't really show any bad side effects until farther down the line. It made me tired and made my hips really hurt. The sunburn effect wasn't that bad for me. The after damage of where they zapped me and it not healing is what turned me off of radiation.

Oh. And if you're doing radiation anywhere near your bladder, make sure you drink lots of water before each session, having a full bladder is supposed to help protect it from damage.

The radiation is supposed to be the final nail in the coffin for the cancer. I found out things yesterday at the doctor that I was completely unaware of like the cancer had spread to the backside of my bladder, some of the colon. He mentioned some colon was removed.

It was an aggressive form. There has been some things that have happened that seemed odd to me until yesterday. My surgery was 13 hours, several teams worked on me. It was supposed to be 6-8 hours. The nurse told my family afterwards that they couldn't believe I survived it.

Prior to the surgery I had doctors introducing themselves to me because they saw my case at a peer review. Yesterday the doctor explained that not only did I heal quicker than I should have but I've skipped past several high risks, didn't struggle much with chemo and he made comments about the chemo I was on is brutal.

On top of all that, when I wasn't in pain after a 13-hour surgery and I was bopping right up, the doctors didn't know how to take all that.

The purpose of it is to wipe out the micro something that isn't caught on CAT scan so it will not reoccur. The research I've done into everything they typically end with radiation for that purpose, it gets what isn't caught by the other tests.

Like I said, I don't know what to expect. I think the hardest part for me is feeling like I've lost a lot of the medical support I had. Home health went from three days a week to once a week at most. Even though I don't need care, just blood work from time to time, you get attached to your nurse and they become part of your support system.

Then there is chemo. I knew I could call there anytime and they moved mountains to get me help. Now I'm done with chemo so it's like another level that feels gone. Cathing was easy to learn, but trying to get help from urology is probably harder than climbing the Himalayas. Ok slight exaggeration but it feels that way.

I'm told every 8 weeks they will flush my port. Every 3 months for a while I'll have CAT scans. I think what's starting to bother me is I'm wondering when you are so officially healed that you can live life without Dr visits so often, when you can feel free.

Before I forget I want to thank everyone for all the wisdom shared. The booboo actually was gone before I had the chance to apply the powder or wipe. Weird huh.

Do have one other question... Who had their ostomy when going through radiation and did it affect your ostomy?

Radiation treatments are very simple, take about 5 minutes each day. For my case and knowing now what came from it, radiation didn't do what they were hoping, shrink the tumor enough to have both ends to reattach to. I could have done the chemotherapy and just surgery with the same outcome.

Did they tell you what skin stuff to keep on your skin to help with the sunburn effect?

Barrier extenders are sections of tape that extend the tape coverage for the wafer. I use them for help with keeping the flange intact during activities that make me sweat a lot. Many manufacturers have a version but you don't have to stay with the same as your other supplies. Like all tapes - everyone reacts differently.

Hi Gairdin! Hope you don't mind the shortness. From viewing your stoma, I noticed one inevitable thing about it. Your stoma is oval and close to your skin. It is no wonder you are having blowouts. When I had my original surgery, my stoma was oval and close to my skin like yours. It took me 10 years to find the answer to that problem. On the advice of an ostomy nurse, I was told to get a revision. What they did was pull my stoma out about an inch and also reduced the ovalness. I haven't had blowouts and never any blockages. My stoma is slightly oval but it doesn't cause any problems. I use an Eakin seal around the stoma and a convex Convatec two-piece on top of that. I could use a flat two-piece also. There really isn't much difference. I also use Hollister two-piece with no problem, but I feel Convatec stays on longer after a shower. I can wear my appliance for 4-5 days before having to change. If you need more info, let me know. Mike

Hi, nope I don't mind the shortness. My stoma isn't flat most of the time, it is usually puffing out an inch or two. Then it has times when it's flat, other times when it's slightly inverted. I am learning some of it has to do with the position I am in and some of it has to do with what my stoma is doing. Do you wear your bag and everything in the shower and afterwards?

What exactly did you encounter with radiation?

I have had some people say it is easier than chemo, and others who didn't. Did they bring you in and make a device that holds you in the same place? He refers to it as my own personal bean bag chair. I guess I want a bit more heads up than what the doctor gives me. Also, did it create any scar tissue inside you?

You won't even feel the radiation until you're about done with your treatments. Mine felt like a sunburn. They instructed me to keep a certain ointment on it to help with it. I'll post it in a bit. Yes, I had my own personal form made that I laid on while getting zapped. Once they get you lined up, each treatment takes less than 5 minutes, or at least mine did. So, about 5 minutes to get you lined up, they leave the room, and then they zap you for a couple of minutes. You won't feel a thing while being zapped. So, my dislike for radiation came after surgery. My scar for surgery was right where they zapped me with radiation. That spot reopened right after surgery because the radiation destroys the good and bad cells it hits. My radiation wound was about as round as a quarter and roughly 2 inches deep. It didn't hurt but it dripped "stuff" continually. They tried numerous things to get it to heal and I finally had to go through 60 Hyperbaric Oxygen Treatments and then 3 grafts of sterilized placenta to get it healed. After all the things they tried, the HBO treatments, and the grafts, it was basically a year to get it healed and probably 200+ visits to the wound nurse and the treatment appointments.

Here's what I was told to put on my skin where the radiation was zapping me. So, I'd grease my butt crack (what little crack I have now) each night. I'd drink a bottle of water on the way to my appointment each day so it'd have time to fill my bladder to help protect it.

The crusting they are referring to is to heal raw rash and build a barrier between the sore skin and the wafer. Just washing and drying doesn't protect the skin for me.

Like I said in another post a while back, I emailed Hollister about barrier wipes. They don't recommend using them unless your skin is irritated. I haven't used a barrier wipe in quite some time. You can use the powder without using wipes also. I have one little spot on my stoma that has a dip and I always put powder on it, blow the excess off, and then apply my barrier ring/bag.