What can we do?

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

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

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

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

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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Wife of 64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) & now pain free

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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49 years old, female. Sick for way too long with Crohn's (or possibly UC) Proctocolectomy and permanent ileostomy in Feb 2011. Surgery for lingering perineal wound on Sept 26. Other than the wound, been feeling healthier than I have in years.

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.

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

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

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

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!

Oh this makes my heart happy!

When I have them going good - I like to try to get 3 or 4 days :)