Question for my lovely Ostomates....

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XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 7/9/2009 1:36 PM (GMT -7)   
Hello All....
 
So I have been having some serious issues with my stoma. I have not namer her yet, but it has been quite a three months. I have had 6-7 partial obstructions in the last couple months since being discharged in the begininning of May with my new ileostomy (not sure if permanent yet). I have also been having problems with leaking. I have been through three different appliances after two visits to the ostomy nurses. I have a tiny ileo that measures just under 7/8 '' if I push it out, otherwise the top is normal and the bottom retracts into my body and then it measures 3/4''. I have tried two types of Hollister, and just tried the modable convatec. With the hollister I cannot last more than every other day and have bad skkin tears around the perimeter of stoma and with the convatec I had it on for 45 min this morning and I am a nurse and I felt something funny at work and looked at my aplliance only to have it leaking everywhere where it always does. I had to call my husband and thank goodness we live close to where I work and he had to bring me my old hollister supplies. He then came and forgot my barrier ring, and had to go home and get it! By this time I had removed the other and had to start two pts chemotherapy with gauze taped to my stomach. Another good thing I work in the hospital setting. So.....
 
Question....have any of you tried the Marlen one piece? I am very nervous. They said this is my last ditch effort to try and stop the leaking? but I am afraid of having a one piece? I always rinse my bag our with soap and water at least twice a day ( I am a little OCD). I do not know if that will be very easy with a one piece....also, are there other brands our there that you all know of? I have a retched little stoma that is very naughty to me and my skin. I go to Cleveland clinic next week for my consultation with a pelvic floor specialist/colorectal surgeon to see if I can get some sort of reversal surgery (j or k pouch, or just reconnected). Another question......I have had five BM's (loose to soft since the fourth of July out of my rectum and not just mucous....remember I have not had anything out of my rectum normal in almost a year) and now I have urges to go to the bathroom almost daily. Is this true for any of you? or is this my body maybe working???
 
Sorry for the lengthy email.....just frustrated
 
Lizzie
Chronic Lifetime Constipation, Dx IBS-C for 7 yrs
Diagnosed Colonic Inertia-Oct 2007
Total Colectomy with ileorectal anastamosis- Jan 28, 2008
Ileus with suspected leak- Feb 1, 2008, ended with four abdomal abscessses and 2 drains
Four abdominal abscesses- Feb 2008
Diagnosed with small bowel Fistula- March 6 2008
Drains removed- End of March 2008
Continued Constipation- biofeedback for 3 mo Aug 2008, Dx Rectal Inertia
Admitted with Small Bowel Obsruction April 4, 2009 and eremgency ileostomy 4/13
Loop ileostomy April 13, 2009 and still recovering woth abdominal abscesses out 4/24
Cleveland Clinic in six weeks for further testing....awaiting approval.
 
"The Greatest Healing Therapy is Friendship and Love"


Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 7/9/2009 2:03 PM (GMT -7)   
Hmm..have you used the Eakin seal? Is that what you are referring to as the barrier? I use both the stomapaste and eakin seal and it builds a nice firm wall around the stoma...I also put stomapowder and use the skin protector wipe everytime I change my system.

I thought I would love the one piece systems, but I actually am really sold on Convatec's moldable wafer as I just take it off and clean it an put on a clean bag (OCD here too...that's why I use disposables! Though, I have a colostomy so only 1-3x per day at most)
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Colozal. Failed Entocort. Failed Rowasa. Failed Steriods. Failed Steroid Enemas. Failed Remicade, Failed Clinical Trial ABT-874/Aisle 12, Failed Humira(severe reaction).
May 7th - Partial Colectomy - Sigmoid Rectal Ostomy - Partial Rectum left for possible re-connect later. Trying to get used to this new life with a bag.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 21 months old


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 7/9/2009 4:26 PM (GMT -7)   
I recommend using a convex wafer with an Eakin Seal. I prefer a two piece appliance, so I can throw away the bag and put on a fresh one without having to change the wafer, especially since I usually get 7 days wear time with my wafers (Coloplast Assura Extended Wear). They carry them in convex, too, if you're interested in trying them out. :-)
Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again.


XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 7/9/2009 5:10 PM (GMT -7)   
Both the convatec modable and the hollister I used were convex wafers. My stoma just slides right under it, even with the modable....it just gets so small when it retracts that nothing holds. I did not try using the modable convatec with a eakin seal ( I think thats what I have, they are little wax like ring things). I use those with the hollister and get one day out of the wafer. I have to empty mine at least 6-10 times a day so disposables are not covered with insurance. My wafer would never last 7 days ever. I do not think I will like a one piece....I just do not know what else to try. Even if I do get a reversal surgery it will not be until after October and I dont know if I my skin is going to hold up....its always itching.
 
Thanks though....I just do not know a lot so I though i wouls ask.
 
Lizzie
Chronic Lifetime Constipation, Dx IBS-C for 7 yrs
Diagnosed Colonic Inertia-Oct 2007
Total Colectomy with ileorectal anastamosis- Jan 28, 2008
Ileus with suspected leak- Feb 1, 2008, ended with four abdomal abscessses and 2 drains
Four abdominal abscesses- Feb 2008
Diagnosed with small bowel Fistula- March 6 2008
Drains removed- End of March 2008
Continued Constipation- biofeedback for 3 mo Aug 2008, Dx Rectal Inertia
Admitted with Small Bowel Obsruction April 4, 2009 and eremgency ileostomy 4/13
Loop ileostomy April 13, 2009 and still recovering woth abdominal abscesses out 4/24
Cleveland Clinic in six weeks for further testing....awaiting approval.
 
"The Greatest Healing Therapy is Friendship and Love"


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 7/9/2009 6:07 PM (GMT -7)   
Lizzie--hang in there, we'll get you through this!!

Here's my suggestion since my stoma is also "petite" and it does a bigger/smaller thing that was irritating me, too!! (I mentioned that so you know you are NOT alone in your situation)

I found that for stomas like ours, the moldables aren't strong enough. I loved the convenience, but it just doesn't hold up, so I now use the Convatec Durahesive w/Convexity that is cut to size. I use the size that is super close to my stoma (even tho I'd use the next size up if it worked normally) with an Eakin Seal. I don't use anything else with it...no prep/no remover/no powder. The Durahesive is recommended for a more liquid output and I have to say I do get 5 days average wear time...It just depends on my activity.

Just so you know, I was started on the Convatec moldables about 5 years ago and used them for ever!!! Then, after I went to a permanent ileo, the size/shape/movement of my ileo made wear time about 2 days...which is UNACCEPTABLE mad So my WOCN had me try precuts and that cured the problem but of course I know more, so I tried every manufacturer under the sun...stuck with Hollister for a while but the wafer just wasn't working (their filters are great and the best I've ever tried...but it was not to be!) and I am now BACK with Convatec precut and get that great 5+ days of wear time...

Just because what you are using now isn't working doesn't mean that Marlen is your last chance...personally, I don't like them because they have a more "institutional" feeling to them. Don't get discouraged! Get an appointment with one of the WOC Nurses while you are at the Cleveland Clinic (that is if you don't already have one w/your appointment) another set of eyes could find the right appliance...AND it could be just in time for a takedown...I'll keep my fingers crossed!!!!!

Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 7/10/2009 8:56 PM (GMT -7)   
Hey. have you tried NOT rinsing? I always wanted to rinse, but it made me have leaks. I don't know why it works for some people, and not for others, but if i rinse, I leak. if i don't rinse, i don't leak.
Maybe you should try that.
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 2/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
coumadin, prenatal vit.
(temporary ileostomy....maybe)

"Things turn out the best for those who make the best of the way things turn out."

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