DOES THIS EVER END????!!!!!

I cannot catch a break. I finally had gotten to where I was having to change less. I was getting "normal"(ha). Then it all went belly up. The leaking is back, changing about 3 times a day. I am not doing anything different, one day all was going as well as expected and then out of the blue the leaks began. I am not leaking stool but it is a greasy liquid. Barring the normal challenges I am faced with, I am concerned about my supplies. According to Edgepark I am unable to request supplies until end of October. I have 20 pouches left and if I cannot get this leaking under control I will run out of pouches. I am hoping to order this item out of pocket.
I am also battling cramps to the point I need pain meds. I know that the stoma itself has no feeling but the area is so itchy that I am loosing it. I feel like ripping the stoma out. When I lay my hand gently over the stoma it is quite warm and sensitive to the touch. Having BMs are uncomfortable. THEY SHOOT HORSES DON'T THEY!!!!
As always, thank you for allowing me to vent.

By papag
Reply 3360795
September 9, 2012 at 12:13 pm
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Hi Kristin. SS about your leaks. I went through this a while ago and came up with that I don't use the glue they say to use I shower then apply the barrier towelett to all over the area. I then use a hairdryer on warm not hot as hot brings oil to the surface and the base won't stick. I dry allover the area, then apply another coating ov the barrier to only the area around the stoma where you put the powder. You only want the powder around the stoma about a quarter of an inch out. I dry this area again I do this about 3 times and it makes a cruse for the base to stick to, then I apply both the pouch/base (already put together). I put them together before I start anything and just before I do the application I remove the paper to expose the sticky part. I assume you are using the 2 part system. I hope this helps good luck I will look for a reply so let us know ..Papa in Florida

By alan41241
Reply 3360920
September 9, 2012 at 12:58 pm
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Kristen, how aggrevating that must be. I can't imagine. And then the other problem of fearing your pouch supply is going to run out. I don't have any answers for you. I just wanted you to know I have read your post and I care.
Blessings,
Alan

By Cookielin
Reply 3360939
September 9, 2012 at 1:06 pm
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You need to contact the nurse who helped you with your supplies originally. (Your surgeon can get her number if you do not have it) She (Or he) can order samples for you to extend your items until edgepark can get you your new stuff. MY nurse got me tons of sample supplies at a time when i was paying put of pocket too. I wonder if you are having a reaction to the glue/paste. I did, and I stopped using it. I would bathe. Then use the wafer (convatec) directly on dry skin after drying with hair dryer. Sometimes from itchiness, while sitting in bathtub I would pour Mylanta over the area. It seemed to calm the skin down which was also feeling greasy as you describe. Then pour water and re set a new wafer. I also used as I keep repeating Nexcare waterproof tape (available at all drug stores) to go around the wafer. I was 86 pounds after surgery and also malnourished. I drank gatorade and also a few cans of ensure daily. In addition to eating. It took about 6 months to gain my health back.Hang in there, You are not alone. Your surgeon has a team that worked with you originally and they can come up with some sample items to deal with the skin and leakage issues. There are answers to all of your issues. Please reach out to the nurses and doctors and insist on some help.

By Cookielin
Reply 3361006 · In reply to 3360939 by Cookielin
September 9, 2012 at 1:28 pm
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There also is a group in Jupiter florida (they have a web site) called Osto group. tel 877-678 6690. They gather supplies for ostomates who have had reversals and no longer need them. They might just have what you need. However, I still think that calling your Nurse or surgeon to get the proper help can provide you with some more items. The most important thing to remember is to NOT FEEL LIKE a VICTIM here. you are a survivor. Big time. I know you are ill and don,t really have much energy to be your own advocate. But i think a few phone calls and you will feel back in control. Do not lose heart. You will get through this and become a stronger person for it. There is help out there. Keep us posted.

By Kristin66
Reply 3361337
September 9, 2012 at 3:56 pm
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Thanks everyone. I will definitely be trying your suggestions.
Has anyone found "the golden years" that we were told would happen. My last few years haven't even been gold plated.
Thank God for you all.

By Chriswife
Reply 3361406
September 9, 2012 at 4:41 pm
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Hi Kristin,

I am sorry you are going through this. What kind of system do you use? Do you use barrier wipes? Those seem to help me a lot! Do you have any irritation under your appliance?

Kerri

By debleerl
Reply 3361530
September 9, 2012 at 5:36 pm
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Oh Kristin, I'm so sorry you are having a bad time. The best we can all give is to contact an ostomy nurse ASAP. Convatec has them on call, but you need to see one face to face if possible. Convatec can send you some supplies so call them too. We can all tell you how we get our appliances to stay on, but you will need to keep trying to find what works for you. I'm wondering with so many surgeries, is your stoma above your waistline and perhaps the normal bending and moving is dislodging the wafer or is something interfering with the adhesive? I don't use anything extra to get my wafer's to stick, just towel dry, trim out the hole, put in the convex insert, attach the pouch, warm the wafer in my hands for a few seconds, add a bead of paste around the hole to help fill in the depression around my stoma, then apply the wafer gently pressing for a few seconds; then I'm done the whole process takes less than ten minutes and I'm off. I get 7-10 days wear time. I realize I'm very lucky in this and I think it's because my stoma is below my waist and I don't have any hair around it. I wish we lived a little closer I would come help you. We are about 6 hours apart along I90. Try to keep your spirits up and get in touch with a nurse ASAP. Keep us posted.

Hugs,
Debbie

By Cookielin
Reply 3361602 · In reply to 3361337 by Kristin66
September 9, 2012 at 6:06 pm
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I am a similar age to you and yes you will find your golden years. You will get this situation under control in time. Be patient with your body. It really takes the BODY soem time to adjust itself to a new way of working. Your mental attitude is also VERY important.Take each day and perhaps find food items that cause less bulk. As much as I was so happy to eat and not get pain after my surgery, I do find that WHAT I eat has a lot to do with leak issues. Staying away from fiber helps me. It sort of lumps up and causes problems. Trial and error and keep trying. You and your body will find peace together. It takes time. It is very overwhelming. Especially if you are feeling weak. Get your strength up little by little. Be patient. You will get there. Baby steps first.

By tjane
Reply 3361650
September 9, 2012 at 6:30 pm
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Kristen I was having leaks and it would take me 3X to get a bag to stick when I changed out everything. I did go to a WOCN and found out I had a dip in my skin next to my stoma. They had me sit in a chair with no bag on and lean a little forward. When I did that you could see the dip in my belly. I never noticed it before because I lay down on the bed when I change my bag. They had me put some paste in a simi-circle and then put on the Ekin seal. I had to crust a couple places first because I had some raw weepy skin close to the stoma. I also found out my stoma had shrunk another 1/4 inch. I can not reorder new bags with the smaller opening until November. I did call and they sent out 2 bags to try and see if the smaller cut out would work better for me. You can call Hollister and Convatec and they can send a few bags to try (free samples). I also tried the hairdryer trick to dry my skin real good and to warm up the Ekin seal. I also hit the hair dry on the back of the applianc efor a few seconds to warm it up a bit. After I did all that my bag stuck the first time. Be careful with the stoma powder because if you leave a little powder on the skin that is not crusted will make the bag not stick. Good luck. I think I would get a hold of a WOCN and see what that oily substance is. Could it be from remover wipes and you are not getting it completly washed off your skin. Time to play dectective with your nurse or surgeon so you can get to the bottom of your problem. I hate it when you can't get a bag to stick the first time. Happends to all of us.Hank in there.

By J2077
Reply 3361726
September 9, 2012 at 7:05 pm
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I too had problems with leakage in the beginning. It was terrible that I was crying all the time. It is scarey and you think it is never going to stop. If I were you I would get ahold of your Ostomy nurse tomorrow and have a chat wtih her/him. Explain what has been happening. In my case, I changed brands of appliance and use Ekin seals to help prevent leakages, once we did that the leakage stopped. Perhaps that is all that is needed. Unfortunately it is not an exact science, it is trial & error. I thought I would never stop leaking, hang in there. It WILL get better. And what is up with limiting the number of supplies we are allowed to order! I think that is horrible! Keep us posted. Good luck!!!

By HappyS (Inactive)
Reply 3362610
September 10, 2012 at 4:54 am
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Hi Kristin,

Feaces are very acid and contact with skin will itch because it burns (just shows how tough the intestines are) You say you have greasy liquid - check it out as you may be producing a lot of bile you can't get rid of. When I get that I cut down (not out) fatty food and it rights itself after a few days.

Golden time - well I'm alive (without my ileostomy I would be dead) and despite an occasional hiccough enjoying my self, working, painting, cooking, talking to friends, enjoying my children and grandchildren and of course, my wonderful wife. I don't expect the Sun to shine every day (especially not in England) but genuinely believe that the Sun shines from within and if we don't recognise the gold it's because we are looking only at the couple of spots of dirt not the shining whole!

By herbsgal70
Reply 3362791 · In reply to 3361753 by papag
September 10, 2012 at 8:02 am
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Good Morning papa and cookielin - you are fairly close to me - I am in Delray Beach - live on the 12th fairway of the golf course there. My daughter, granddaughter and 2 great-granddaughters are in Palm Bay. I got fed up with Edgepark - the hospital steered me to them in December when I got my ileostomy - I exchanged some moldable barriers to pre-cut ones, and they charged me $138 telling me that Medicare did not pay for them. I found NationsHealth right here in Wellington, who did pay for them, and do a much better job, closer to home. They also deliver - very next day if I need supplies in a hurry. You might want to look into them - and yes, cookie, you can get your doctor to up your prescription if you need more supplies than previously allowed. I found a wonderful medical supply store where I can get anything I need for "Buddy's" care if I run short. The man who owns it was an ostomy specialist up north somewhere and had attended several classes on ostomy supplies. They are, of course, more expensive without Medicare paying for them, but in an emergency I am happy to pay it. Hugs from Marge

By laurieM2
Reply 3363003
September 10, 2012 at 9:17 am
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Not sure what your apparatus is, but I have Hollister two piece...wafer #3704 and bag #3804...I can reuse the bags several times...I put a clean one on daily after my shower and wash the soiled in the shower and air dry on its own...I'm not sure where this "leaking" problem is coming from when people complain about it? I have wondered if it is just from the "one piece" or what...I tried so many types in the beginning and then a home health nurse recommended what I now use and will probably always use...

I have occasional "itching" around the stoma, usually will happen when time to change wafer...not always though...I just put cortisone cream around the stoma area and it cures it almost instantly...hope your problems are resolved soon...have a happy day!
Laurie:)

By shelby01
Reply 3363190
September 10, 2012 at 10:23 am
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hi all! i too have to change sometimes up to 6 times a day! i run out of supplies and am limited through medicare also, so far in the 6 months i have had my illey i've gone through about $1,000.00 on my credit card because i have to pay for xtra supplies!!!! i'm getting in debt because of this thing. i still have about 6 more months of this before i can get my reversal and i can't wait...hopefully i can go back to work to pay off this debt. the days can't go by fast enough for me. sometimes i can get a pouch to work for 3 days, other times not at all. i know what you are going thru and it is the worst (leakage). i also have to pay 35-50 dollars for overnite delivery-killin me. i have been to my stoma nurse several times and it changes all the time...very discouraging.

By herbsgal70
Reply 3363244
September 10, 2012 at 10:45 am
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SHELBY - you shouldn't have to change so often - especially so many times a day. Please consult a WCON (wound care osotomy nurse) for help - you can find one in the Yellow Pages under "Wound Care Facilities" - just call them and ask if they have a WCON on staff - I did that and was able to find an appliance and applying instructions because I had to change 9 times in a week - in the middle of moving! I had weepy sores under the barrier that prevented a good seal, and the constant changing only made them worse. The ostomy nurse helped me to clear everything up, and I am now able to go 3 or 4 days without changing and more important, without any leaks, Good luck and hugs from Marge

By amt52
Reply 3363280
September 10, 2012 at 10:56 am
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Kristin, Sometimes, if things have been working well, and all of a sudden they deteriorate quickly, it could be an 'anatomy' change. If you have either gained or lost a few pounds, if your stoma is receding more, if the area around your stoma is not flat, etc. You may need to "build up" the area with convexity. Of course, best option is the ostomy nurse. If you can't get one to come to you, I have done this: My dr. will order a consult with the wound/ostomy nurse at hospital, they will set up a time for you to go in as an OUTPATIENT, and she can walk through a change with you, identify any problems. Best wishes.

By shelby01
Reply 3363391 · In reply to 3363244 by herbsgal70
September 10, 2012 at 11:32 am
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hi herbsgal, thanks for the advice. i live on cape cod and the wocn here basically gave up and told me to go to boston
for help. i did and lord knows she tried many times to help me...but my illy is so complex ( it goes in about 1/2 inch then
has an opening on the bottom of it.) i keep trying and not much helps.

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