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Ostomies
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Toritoo
Regular Member
Joined : Apr 2008
Posts : 184
Posted 4/22/2012 12:15 PM (GMT -7)

Hi All,

  It's been awhile since I posted about problems my mom is having with her ileostomy bags. Since last friday she has gone through 12 to 15 bags! We know it''s not anything we are doing wrong because while she was in the hospital last week they had the same problems. I watched the ileostomy nurse change her bag and she did exactly what we've been doing at home and her bag broke a couple times a day in the hospital. Now it's Sunday and we only have 3 flanges and about 12 bags left. I called the home care nurse and she said there is nothing they can do and if we run out we have to take her back to the hospital - again! I'm so worried about her because she is getting so depressed over the whole situation. Is there any way at all that we can get these flanges from a pharmacy or something? We use Shields bags and flanges but at this point we will take anything. If anyone has any suggestions please let me know. Thank you for being here for us at these hard times.

toritoo sad

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julee70
Regular Member
Joined : Oct 2007
Posts : 486
Posted 4/22/2012 12:54 PM (GMT -7)
Hi. We had the same problem with my family member who I was helping care for. I called around and finally found a medical supply store that I could go to and get some new bags and wafers. It cost a lot (about $60 for 10 wafers and $60 for 10 bags) but at least we had supplies. For the future, you can also start calling all the ostomy supply companies (Convotech, Hollister, Coloplast, etc) and order free samples. Then you can try some different styles and also get some free supplies out of it. Hopefully you will find something that works better. Hang in.
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Toritoo
Regular Member
Joined : Apr 2008
Posts : 184
Posted 4/22/2012 1:58 PM (GMT -7)
Hi Julee7, thanks for the help that is what I am trying to do but can't seem to find anyone open on Sunday. I've ordered samples from a couple different companies but I guess I should just ask all of the suppliers. Just keeping our fingers crossed since we only have 2 flanges left till Mom goes to the Dr.  tomorrow where I'm hoping she will be able to get into see her stoma nurse at the same time and get some spares from her. I don't understand the supplier we are working with now, Shields, when I called them a few weeks back and told them we needed more bags and flanges they sent 2 boxes of 10 each on the bags but not one flange! How inept are these people? If we need bags it's pretty obvious we will need the flanges to go with them. So I called again and told them the problem and they said they would send them but so far nothing. They told me that the supplies they sent us should have lasted 3 months and we were'nt eligible to get more before some time in May! Is this normal procedure for suppliers? My moms ileostomy is only a few months old so of course we had to get a handle on how to change them as they kept leaking. Again thank you for the help.

toritoo

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allbluezoo
Regular Member
Joined : Feb 2012
Posts : 446
Posted 4/22/2012 7:40 PM (GMT -7)
I'm sorry I don't know the history of your story or where you all live but I am so sorry things aren't working out - just know that new ileos have tendency to change, shrinking or getting bigger even and until you are months out from surgery you could be changing the size of the stoma opening on the wafer a lot. Mine shrunk, went back to the size it was and now shrunk again and I am 4 months post op. When you say her pouch broke do you mean the seal broke from the wafer to the skin or the actual pouch ruptured?
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esoR
Veteran Member
Joined : Jan 2007
Posts : 4147
Posted 4/22/2012 8:28 PM (GMT -7)
Yikes. Order from Byram Health care, they come in about 2 days and if you put a rush on it they may come faster. Edgepark is also good. Good luck.. Rosemary
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Toritoo
Regular Member
Joined : Apr 2008
Posts : 184
Posted 4/22/2012 9:19 PM (GMT -7)
Thank you, thank you thank you. We've made it thru the day and have 2 left till Mom goes to the Dr. in the morning. I wull try your suggestions and "Keep Calm and Carry On" (my favorite saying - Winston Churchill). What other choice is there really? As I saud thank you all.
toritoo
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Toritoo
Regular Member
Joined : Apr 2008
Posts : 184
Posted 4/22/2012 9:22 PM (GMT -7)
Also when I say the bags broke I really mean the seal leaked. The bags aren't rupturing - yet. Hopefully we won't have to worry about that as well.
toritoo
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summerstorm
Veteran Member
Joined : Aug 2006
Posts : 6575
Posted 4/22/2012 9:28 PM (GMT -7)
I've never heard of that brand, so I don't know anything about it. But if its leaking that often you either have a bad batch or there is something causing it to leak, like a skindimple, or the hole is too big. I don't know what other products you are using along with it, like paste or sure seals or eakin seals. Skin preps can lessen wear time, so can using certain soaps or lotions.
Good luck!
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Another UC wife
Veteran Member
Joined : Jun 2007
Posts : 2111
Posted 4/23/2012 9:27 AM (GMT -7)
Maybe the ostomy nurse can better diagnose what the problem is and how to correct it? I would think your supplier can overnight supplies to you although I am sure you are looking at a pricey situation but you need them when you need them!!! Wish there was an easier way to get your hands on supplies when an emergency situation like this occurs. Have you called local medical supply places in your area for assistance???
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summerstorm
Veteran Member
Joined : Aug 2006
Posts : 6575
Posted 4/23/2012 10:28 AM (GMT -7)
Or check with an ostomy support group in your area to see if anyone has extras. Sometimes people have leftovers from before takedowns, or like I have some I got samples of and didn't like. That might be a way to get some.
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blueglass
Veteran Member
Joined : Dec 2010
Posts : 3332
Posted 4/24/2012 6:36 AM (GMT -7)
Is your mom on medicare? They have a limit on the number of pouches, but you can get a note from the doctor to allow more.

I agree w/UC wife -- you need help from an ostomy nurse to find a better system.

Hope you can figure something out, sounds horribly stressful for you both.
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Toritoo
Regular Member
Joined : Apr 2008
Posts : 184
Posted 4/28/2012 12:50 PM (GMT -7)
Thank you everyone for all the advice and support. I think we have to watch what we feed her better. Maybe small meals several times a day instead of her usual diet would be best?
I've called for samples from several other companies so we will see. This latest bag has been on there a couple of days and the one before stuck so well we had to change it just cause it had been on for 4 days.
Again thank you all.
toritoo
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windy city
Veteran Member
Joined : Dec 2010
Posts : 608
Posted 4/28/2012 2:29 PM (GMT -7)
I'm sorry that this has been so stressful.

Reading your origional post, that sounded like me when I came home. My ileostomy was an emergency, so I only got what I brought home from the hospital. They were awful. Then everyday, every other day, when the home health nurse came, she would bring me samples. I didn't even have a clue that I could order samples from the manufactures. Mine were leaking so badly, within hours was using up everything the nurse brought. Spending every 4 hours in the bathroom for an hour and a half doing ostomy and wound care (abdominal incision was open, incision drainage was probably causing the ostomy to leak.) Was beside myself in angst and depression! In such distress one night, called the surgeon at 11pm and he told me to go to the ER and get some. The next morning, purchased some from a local medical supply store (was Labor Day weekend, not one nurse was answering their phone, paid over $200.) FINALLY after a week, a stoma nurse came and ordered moldable convexity wafers, and it worked, got a weeks wear!

I'm glad the latest bags are sticking. New stoma's change in size, it just takes time. For me, my food intake wasn't an issue. Keep in contact with the ostomy nurse, keep trying different appliances, with or with out the skin prep, paste or eakin seals. I use paste in my dips with the eakin on top. I use a high dryer w/pressure to really bring everything together. It's all trial and error. I too am only allowed 10 wafers, 20 bags/month, but the 1st month my doctor approved more. Call the local ostomy support group and see how they distribute appliances for those in need.
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summerstorm
Veteran Member
Joined : Aug 2006
Posts : 6575
Posted 4/28/2012 2:30 PM (GMT -7)
Just so you know, even though the companies and ets usually say 4 days, you don't have to change then. If its still sticking and not leaking, leave it on! If at 4 days it was hard to pull off, go for 5 this time.
Glad things are going better!
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Toritoo
Regular Member
Joined : Apr 2008
Posts : 184
Posted 5/3/2012 9:40 AM (GMT -7)
Thanks everyone. Mom's back in the hospital, again. Now we are having problems with her nutrition, seems the food is going through her so fast that she isn't getting any of the nutrients she needs. She also needed 4 pints of blood but they have no idea where it's going. This whole mess is

just so hard on her. Mom is one of those women who does all kinds of things and goes out a lot - not any more though. She feels like a prisoner in

her own body. Yet she hasn't given up and now is ready when her body is for the reversal surgery. Fingers crossed. Thanks again all. It's so nice to know that I have somewhere to go for help and advice and just venting.

toritoo

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windy city
Veteran Member
Joined : Dec 2010
Posts : 608
Posted 5/3/2012 1:20 PM (GMT -7)
I'm sorry for this setback. I have 2 friends mother's in the same predicament. One friends mother just had her stoma reversal and she's doing fine 2 months post op. When she had her colostomy, she was miserable, and she's a retired nurse. Tomorrow she's celebrating her 70th bday and I can't wait to celebrate it with her. Another is my sister's friend, she's 80 and had a colectomy in January with a permament ileostomy. She's learning to deal with it, I give her as much advise as I can. She's said to me, that despite her age and numerous health problems, she's had 5 back surgeries along with countless others.....this one is the hardest both physically and mentally and the ileostomy is a world in of itself. We have to all give ourselves alot of credit to keep moving forward. Your mother, once this gets all sorted out, will get her life back on track....hopefully very soon.

I'm glad that you, her child, is taking such good care of her!!! Much hugs and support!!!!
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Toritoo
Regular Member
Joined : Apr 2008
Posts : 184
Posted 5/5/2012 3:02 PM (GMT -7)
Hi Windy city, thank you so much for the words of encouragement, we are doing the best we can. She's our Mom so it's a labor or love really. Oh and thanks for the good news as well. They are trying to get her healthy enough to go through the reversal surgery (which I understand comes with it's own problems for the first few months). Oh well, "Keep Calm and Carry On", that's my motto, mantra or whatever it's called. Thanks again.
toritoo
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Trigirl
Veteran Member
Joined : Jan 2006
Posts : 768
Posted 5/6/2012 8:22 AM (GMT -7)
It's so hard at the beginning. What's that saying it's not the challenge gets easier but our ability to do get better.

You seem like a wonderful help for your mother. Hope you get all the blessings and joys of your willingness to help.

I realized recently that the way I sit and lay in bed can sometime affect how the drainage goes. Almost 3 years and I'm still learning. Mine seems to stay 3 or less with the things I do. have had it on longer when I don't do sports and out put is thicker.

Hope things get better soon. Sounds like you are getting there.
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Toritoo
Regular Member
Joined : Apr 2008
Posts : 184
Posted 5/10/2012 11:18 AM (GMT -7)
The bags aren't what's breaking actually it's the seal of the flanges. It just eats it away no matter how good a seal we get on it. We are at a point where if a bag lasts more than 24 hours we're happy. Going to try and work with the hospital Stoma Nurse about ordering different bags and flanges. We know it's not just us at home because even when she is in the hospital and the stoma nurse puts the bag on it still doesn't last 24 hours! It's ridiculous. We changed it at 5 a.m. and it is now 11:20 and it just went again! Gotta go. thanks
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Toritoo
Regular Member
Joined : Apr 2008
Posts : 184
Posted 5/11/2012 7:27 AM (GMT -7)
Ok. We've had enough! My poor Mom went through 6 bags yesterday and last night. She was awake all night & is so tired. We finally got some supplies from the same company Shields, convex flanges and bags. They sent us 20 bags and 10 flanges! How does the math work on that? Now we have 5 flanges left and a couple dozen bags, what good is that! Im sorry but we're so tired of seeing our Mom going through this I guess I just needed to vent since we just finished changing her bag - again. I've never seen her look so sad. Thanks for listening everyone. If it makes any difference my Mom has Kaiser insurance and have talked with everyone in the stoma department.
toritoo
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allbluezoo
Regular Member
Joined : Feb 2012
Posts : 446
Posted 5/11/2012 1:57 PM (GMT -7)
I'm gonna step by step what I do, I know you are frustrated and I am so sorry. I can totally relate b/c what you are describing is exactly what I went though for about 10 days until I switched to a different pouch.

I use wound cleanser and spray it on a 4x4 gauze pad to wipe down the area around my stoma
Then I "dry" the area with a 4x4 gauze pad REALLY WELL, sometimes I'll even hit it with the hair dryer on the cool/low setting
Then I wipe down the area with skin barrier/prep Cavilon
While that sets and gets tacky I put a ring of Stomahesive paste around the opening on my wafer
Slap it on
Apply gentle pressure right around the stoma to get the paste all pushed into the crevices and dips
Place palm over entire wafer to "warm it up"
If I have extra time I'll hit it with the hair dryer on the lowest warm setting for a couple minutes
Then I try not to bend, stretch, etc. for about 10 minutes while it all "sets" and I usually keep my hand over it for good measure

I use Cavilon skin prep/barrier wipe, Stomahesive paste and Coloplast 14404 pouch

And, as for the 20 bags and 10 flanges - they are "assuming" that the patient is able to leave the wafer on and change the bag (2 bags per 1 wafer) I am guessing. Has she tried a 1piece? God love ya'll, I hope something starts working for her!
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Toritoo
Regular Member
Joined : Apr 2008
Posts : 184
Posted 5/12/2012 11:49 AM (GMT -7)
At last!!! Mom saw a real stoma nurse yesterday and got her stoma size (7/8") and an eakin seal and some helpful advice that we could rely on. We've been showed so many different ways. So, anyways she put a new bag and wafer/flange and eakin seal on my Mom yesterday around 2 ish and she still has it on! A light at the end of the tunnel! The first night in months we've all slept thru the night and didn't wake up to seeing my poor Mom in bed covered in feces on dirty sheets. No middle of the night sheet changes. It was just so liberating and made us all have hope that we have got things right at last and Mom doesn't have to suffer thru that anymore. (Knock on wood) I feel like someone took alot of weight off my shoulders and her name is Rosario, the stoma nurse. Thank you ever so much everyone. All of your advice was appreciated and helpful as well. Have a great weekend, we plan too!
toritoo
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allbluezoo
Regular Member
Joined : Feb 2012
Posts : 446
Posted 5/13/2012 7:33 AM (GMT -7)
Oh this makes my heart happy!
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Toritoo
Regular Member
Joined : Apr 2008
Posts : 184
Posted 5/13/2012 11:37 AM (GMT -7)
smilewinkgrin  Day 3 and the bags still on!!! What a great Mothers day gift for my Mom. Just wondering now just how long we should leave this bag on before we change it? I've heard 3,4,5, plus days but I don't want to leave it on too long. Like sleeping babies - never wake them only it's a bag not a baby and it's being so good.

 

Happy Mothers day to each and everyone of you. Have a great day - that's our plan.

toritoo

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allbluezoo
Regular Member
Joined : Feb 2012
Posts : 446
Posted 5/13/2012 5:34 PM (GMT -7)
When I have them going good - I like to try to get 3 or 4 days :)
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