illeostomy problems...

poochini04
poochini04 Member Posts: 11
edited March 2014 in Colorectal Cancer #1
Hi all. My mom was diagnosed with colon cancer in April. She just had a complete colectomy on May 15. We have been having so many problems with her temporary illeostomy bag. It leaks all the time. Instead of changing the bag once every 3 days, we change it 3-4 times EACH day. Her skin underneath, as you can probably imagine, looks absolutely sore and painful. In the area just around the stoma/opening, the skin is bleeding. A little further out from the opening, the skin is blistered and leaking a clear fluid. As you can imagine, we are having even more trouble trying to get the bags to stay on the skin and not leak now that the skin never is dry. My mom cries all the time and feels sub-human. It is hard on me, the oldest daughter and primary caregiver, to see her so upset. I don't know if any of you have even had this problem, but do you have any ideas or advice for making the bag stick or even just trying to get through the day. She can't go out anywhere. She barely leaves the couch out of fear that the bag will start leaking again. PLEASE help us!! I think if we make the bag stick, the skin will finally have a chance to heal. Not only that, but maybe mom could start to have a normal life again. She doesn't see any way to live through the next 2 months. And, she fears that because her tumor was stage 2 and level T3, the oncologists will recommend chemo, which means she has to live with the bag even longer. Please tell me this will get better!

Comments

  • houseofclay
    houseofclay Member Posts: 63
    #2
    I am sorry to hear about your mom's ileostomy challenges. My husband had a temporary ileostomy for almost 9 months and we had some issues at the beginning. First suggestion--visit a wound/ostomy nurse. Your surgeon should be able to give a referral if needed. It sounds like the skin around the stoma needs some attention.

    Second suggestion--try a 2 piece pouching system. The 2 piece system has a wafer that attaches snugly to your skin and the pouch snaps on and you can add an optional belt to the wafer for added security. My husband did better with the 2 piece system both with avoiding digestive enzymes on his skin and we only had to change the wafer weekly instead of 2-3 times of week with the one piece pouch.

    It sounds like her skin might be reacting to the adhesive, too but at the very least, the constant changing of the pouches has irritated the skin. You really don't want any sort of infection starting there, so I would see a nurse or doctor soon. Hope that helps.
  • cal79
    cal79 Member Posts: 57
    #3
    I can understand your concern completely, but honestly it does get better!

    I had a temporary ileostomy for about 7 months. I have sensitive skin, and had similar problems to what you are describing, which made me very depressed and concerned about leaving the house too.

    I went to see my stomal therapy nurse, and she said I had experienced an allergic reaction to the the adhesive in the appliance. The solution for me was to change the brand (they all use different adhesives) and the system from a one-piece to a two-piece. To clear up the allergy, I used a barrier cream and powder which acted in two ways - it soothed and healed the blisters, then the powder created a dry barrier for the adhesive to stick to. Therefore it was not actually sticking to the skin which let it heal.

    To soothe the skin (which was very sore!) I tried to keep the bag off for around 30 minutes in the morning when I was changing the appliance, and just lay on the floor with a warm cloth on the stoma area and lots of padding to mop up any spills. I found it only took a short time for my skin to heal.

    So, definitely make an appointment with a local stomal therapy nurse, and be aware that there are many products and brands designed to help with the skin problems that are common to ileostomies.

    Just like your mum, I was sure I was sure I would never leave the house again, but once the skin cleared up, within two weeks I went back to work full time with no dramas at all.

    Good luck, and I hope you find a speedy solution!

    Cal :)
  • KathiM
    KathiM Member Posts: 8,028 Member
    #4
    I never had this challenge, but just had to say:
    First, hugs to you and mom!
    Second...WOW...what informed answers from the 'repliers'. This is what makes this site GREAT!
    Hugs,Kathi
  • pepperdog
    pepperdog Member Posts: 96
    #5
    My husband has a temporary ileostomy. You need a stoma/wound nurse. We had one b4 we left the hospital and she was TERRIFIC. There are solutions for your mom's problems.....you shouldn't have to be changing the barrier daily. GET IN TOUCH WITH A STOMA NURSE RIGHT AWAY.
  • catherinee
    catherinee Member Posts: 5
    #6
    Sounds like you have gotten a very good advice. I had a temporary illeostomy and I can totally relate to your moms'emotional state. I would not let anyone in my family even look at it. It gets easier with time. I had mine for 9 months, I also had stage 2. I went through 6 months chemo and then 6 weeks after that it was reversed. Just try to be understanding as possible, it does make you feel like a monster sometimes. My bag broke at a flea market and I had to walk through the entire thing to get back to my car, it was devastating. I just decided that no matter how awful that was I wasn't going to quit living. It did happen from time to time but I just tried to take a deep breath and get through it. Take care :)
  • poochini04
    poochini04 Member Posts: 11
    #7
    houseofclay said:

    I am sorry to hear about your mom's ileostomy challenges. My husband had a temporary ileostomy for almost 9 months and we had some issues at the beginning. First suggestion--visit a wound/ostomy nurse. Your surgeon should be able to give a referral if needed. It sounds like the skin around the stoma needs some attention.

    Second suggestion--try a 2 piece pouching system. The 2 piece system has a wafer that attaches snugly to your skin and the pouch snaps on and you can add an optional belt to the wafer for added security. My husband did better with the 2 piece system both with avoiding digestive enzymes on his skin and we only had to change the wafer weekly instead of 2-3 times of week with the one piece pouch.

    It sounds like her skin might be reacting to the adhesive, too but at the very least, the constant changing of the pouches has irritated the skin. You really don't want any sort of infection starting there, so I would see a nurse or doctor soon. Hope that helps.

    Hi. I feel bad that your husband went through that, but I am glad we are not alone. I forgot to mention that we actually have 2 ostomy nurses. In fact, we saw one today. One tried to change the bag and the minute after she left the room, the new bag leaked. We had just put all of that goop on (we do a powder/barrier protector layer, then an eakin seal, then a duodenum layer, then the bag with stoma paste on it--what a load). Any way, we flagged her down. She contacted the other nurse and they talked for a while. The solution they came up with held for about 1 hour and then the bag leaked. We couldn't even go to dinner. I am just so frustrated. So, the 2-piece system works better for you? That's cool. We have tried both and it seems that the 2-piece works better--though not the way it should. Thanks so much for your advice...luckily the nurse said the skin is not infected...though I think it might be--blisters and weeping are not normal!
  • poochini04
    poochini04 Member Posts: 11
    #8
    cal79 said:

    I can understand your concern completely, but honestly it does get better!

    I had a temporary ileostomy for about 7 months. I have sensitive skin, and had similar problems to what you are describing, which made me very depressed and concerned about leaving the house too.

    I went to see my stomal therapy nurse, and she said I had experienced an allergic reaction to the the adhesive in the appliance. The solution for me was to change the brand (they all use different adhesives) and the system from a one-piece to a two-piece. To clear up the allergy, I used a barrier cream and powder which acted in two ways - it soothed and healed the blisters, then the powder created a dry barrier for the adhesive to stick to. Therefore it was not actually sticking to the skin which let it heal.

    To soothe the skin (which was very sore!) I tried to keep the bag off for around 30 minutes in the morning when I was changing the appliance, and just lay on the floor with a warm cloth on the stoma area and lots of padding to mop up any spills. I found it only took a short time for my skin to heal.

    So, definitely make an appointment with a local stomal therapy nurse, and be aware that there are many products and brands designed to help with the skin problems that are common to ileostomies.

    Just like your mum, I was sure I was sure I would never leave the house again, but once the skin cleared up, within two weeks I went back to work full time with no dramas at all.

    Good luck, and I hope you find a speedy solution!

    Cal :)

    Wow--7 months seems like such a ways away. It has been a month and I am finding the thought of six more months unimaginable. Your suggestions are great--thanks so much. I was wondering if mom might be having a reaction to all of the adhesives and layers. Is barrier cream anything like the barrier protecting wipe? We make a "paste" with the stomadhesive powder and barrier wipe, but it just looks more and more irritated and I don't think it is lasting very long. We might try changing the brand or keeping the bag off for longer. Mom was so irritated after the nurse changed it twice that we had to let the exposed skin rest--it was starting to weep and bleed. I can't believe you could work, but maybe it will get better for us. Thanks for the thoughts--I really hope it does get better.
  • poochini04
    poochini04 Member Posts: 11
    #9
    pepperdog said:

    My husband has a temporary ileostomy. You need a stoma/wound nurse. We had one b4 we left the hospital and she was TERRIFIC. There are solutions for your mom's problems.....you shouldn't have to be changing the barrier daily. GET IN TOUCH WITH A STOMA NURSE RIGHT AWAY.

    The sad thing is that we have two nurses...and they are both pretty good, but haven't come up with any answers yet. That appointment today when she changed it twice was just torture. They keep coming up with good, inventive solutions, but nothing seems to be "sticking" so to speak. I really hope this next idea works. I am praying as hard as I can and keeping my fingers crossed as back up!!
  • poochini04
    poochini04 Member Posts: 11
    #10
    catherinee said:

    Sounds like you have gotten a very good advice. I had a temporary illeostomy and I can totally relate to your moms'emotional state. I would not let anyone in my family even look at it. It gets easier with time. I had mine for 9 months, I also had stage 2. I went through 6 months chemo and then 6 weeks after that it was reversed. Just try to be understanding as possible, it does make you feel like a monster sometimes. My bag broke at a flea market and I had to walk through the entire thing to get back to my car, it was devastating. I just decided that no matter how awful that was I wasn't going to quit living. It did happen from time to time but I just tried to take a deep breath and get through it. Take care :)

    What a great attitude. My mom has always been such an optimist, it is hard to see her breaking down. She's a first grade teacher and one day, she slipped on some spilled water and fell on the floor. As she left on a stretcher, she was making jokes with the kids. We are trying to be positive...we were smiling when the bag lasted, even if for only an hour. This is just so hard. Especially since she can't control her own body. We will try taking a breath every now and then. I think the more we worry and stress about it, the more likely the bag will leak...even if that sounds a little silly. Thanks for the post and you take care too.
  • poochini04
    poochini04 Member Posts: 11
    #11
    KathiM said:

    I never had this challenge, but just had to say:
    First, hugs to you and mom!
    Second...WOW...what informed answers from the 'repliers'. This is what makes this site GREAT!
    Hugs,Kathi

    THanks, hugs to you too. Also, I am so delighted to have found this website. It helps so much to have people to talk to who have been through this. I don't know how people get through something like this alone!
  • cal79
    cal79 Member Posts: 57
    #12
    I would steer clear of the barrier wipes - most of them contain alcohol and so they make the problems worse. The only range I found I could use was Dansac (www.dansac.com). I also used Convatec (I think that was the name) barrier cream - this is pretty much only zinc oxide but still lets the adhesive stick. The powder was from Dansac as were the two piece bags.

    Are you using a convex system? These are very good for making sure the stoma sticks out and therefore the output can't get under the seal which is why the bags tend to leak. Also, you don't cut a hole with these, you pull them and 'mould' them to the stoma. Cutting the holes can cause real problems with leaking I found.

    Other things you could try - leaking is more common with very watery output. Try thickening it up through diet (ie toast, pasta, mash etc) which this can help some people. Pat the powder on top of the barrier cream - this creates a dry area for the adhesive to stick to. Have a look at www.ostomates.org message boards - they have a whole board dedicated to skin problems.

    I understand how daunting it seems at this stage, but it really does get easier once you get it under control. I remember when I first got home from hospital with the bag, I felt awful. All I kept thinking was that I could never wear a bikini again, and that I had no clothes that would cover the bag (us 25 year olds are so vain!!). But, after I got the skin healed, and adjusted to wearing the bag I started living my life normally again. Only a few months after surgery I donned a wetsuit and went swimming with the dolphins!

    I hope this gives you a bit of encouragement, and you might find something useful here.

    Cal :)
  • Moesimo
    Moesimo Member Posts: 1,072 Member
    #13
    your mom will get through this. maybe she can call on of the stoma companies and that nurse can help her. My stoma nurse was great and I could not have gotten through this without her.

    Maureen
  • poochini04
    poochini04 Member Posts: 11
    #14
    cal79 said:

    I would steer clear of the barrier wipes - most of them contain alcohol and so they make the problems worse. The only range I found I could use was Dansac (www.dansac.com). I also used Convatec (I think that was the name) barrier cream - this is pretty much only zinc oxide but still lets the adhesive stick. The powder was from Dansac as were the two piece bags.

    Are you using a convex system? These are very good for making sure the stoma sticks out and therefore the output can't get under the seal which is why the bags tend to leak. Also, you don't cut a hole with these, you pull them and 'mould' them to the stoma. Cutting the holes can cause real problems with leaking I found.

    Other things you could try - leaking is more common with very watery output. Try thickening it up through diet (ie toast, pasta, mash etc) which this can help some people. Pat the powder on top of the barrier cream - this creates a dry area for the adhesive to stick to. Have a look at www.ostomates.org message boards - they have a whole board dedicated to skin problems.

    I understand how daunting it seems at this stage, but it really does get easier once you get it under control. I remember when I first got home from hospital with the bag, I felt awful. All I kept thinking was that I could never wear a bikini again, and that I had no clothes that would cover the bag (us 25 year olds are so vain!!). But, after I got the skin healed, and adjusted to wearing the bag I started living my life normally again. Only a few months after surgery I donned a wetsuit and went swimming with the dolphins!

    I hope this gives you a bit of encouragement, and you might find something useful here.

    Cal :)

    wow--thanks for all of the great advice. I will give some of those ideas a try. we order from convatec, and, yes, we are using a convex system. I will tell my mom to pick up some cream to try with the powder. it couldn't make it any worse! and, thanks for the other website. there were several helpful hints there too. i am glad it got easier for you. i know it will get easier for us too, but it just seems impossible right now. any way, thanks again for your help suggestions. i really really appreciate them.

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