Im at my witsend so what do i do??????

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damagedgoods41
Regular Member


Date Joined Sep 2009
Total Posts : 377
   Posted 2/20/2010 7:32 PM (GMT -6)   
Hello My name is Beverley and am an ostomate. I have had my ileostomy for nearly 10years now. But about 8 months ago i had a parastomal hernia repair and they also had to remove another 10cms due to the stoma being strangled,so i had that op then after id been home for 4 days i ended up with a massive abcess and peritonisis and ended up having an emergency laparotomy which was my 45 operation from the age of 23yrs. Anyway the reason im at wits end is because without fail im having major leakage every morning as soon as i get out of bed?? It's becoming so very distressing to me and i just want to run away and hide from the world as it's so very embarrassing to me and am to scared to even go out unless i really have to. I think i may know why im having so much leakage and this is why. about 2 months ago my hernia has come back and is getting very large again and when i put my 2 peice hollister on with an adapt ring over the stoma and wear a belt also,Ive noticed that my stoma is retracting to the point that sometimes i cant even see it properly and that's when the output is constantly leaking under the baseplate and wont fall into the bag!!! Im so terribly confused about all of this and dont know what to do anymore and my stomal therapist keep's saying make sure you wear ur belt well i am and it's not helping me at all and am hitting a brick wall as i have no idea how to rectify this HUGE problem in my life!!!!
I also suffer from chronic depression,bi-polar11 and o.c.d. and with all of this going on it's getting me even more depressed and distressed as i dont know anymore.
somebody please help me.
 
sincerley,
 
damagedgoodssad blush mad blush blush
Permanent ileostomy,radical hysterectomy & bi-lateral ophrectomy,bi-lateral mastectomy,atonic bladder.
DX chronic depression,bi-polarr11,panic disorder & o.c.d.!!!
Currently taking Avanza 30mg,Abilify 20mg,Seroquel 200mgs,Asprin,Valium 5mgs & Sandrena HRT gel 1.0mgs
Strive to be a success but rather to be of value!!!!!!!
 
Dont count the day's,make the day's count!!!!!!
 
No more revenge now;I will think upon revenge!!!!
  • I dont knowthe key to success,but the key to failure

    is trying to please everybody!!!!!!!!!!!

    Life becomes harder for us, when we live life for others!!!

    Without music, life would be a mistake!!!!!!!!!

    Im not young enough to know everything!!!!!!!!

     

     
     
     
     
     
     
     


    schrek-chewbacca hunk
    Veteran Member


    Date Joined Jun 2005
    Total Posts : 2666
       Posted 2/20/2010 8:29 PM (GMT -6)   

    I am at a loss as to how to help you other than for you to contact your surgeon and/or Ostomy Nurse for emergency help.  Leakages of that freaquency I would think would require the immediate action by your health care provider.  In the meantime, can you use a sure seal around the flange?  I also had some leakages, although nothing like yours when I was in the hospital, and I ended up getting J&J white adhesive tape - the very heavy and unfortunately somewhat painful when removing kind and reinforced the sure seal with it.   It worked though I did have to change my appliance every 2 days then - something they were giving me for MRSA surgery - but I would think the leakages would also be irritating your skin.  Get thee off to your surgeon, or Ostomy nurse asap.

    I wish I could be more help.

    love

    bob   


    dilatante
    Regular Member


    Date Joined Jan 2009
    Total Posts : 125
       Posted 2/20/2010 10:55 PM (GMT -6)   
    Beverly, I feel your pain! I had this problem also. Have you contacted your ostomy nurse?? You might also try some convex wafers, that really helped me. whitney

    Trigirl
    Veteran Member


    Date Joined Jan 2006
    Total Posts : 768
       Posted 2/20/2010 10:58 PM (GMT -6)   
    That really sounds awful. I liked Bob's idea.

    Some people can get relief from leaks by using a convex appliance.

    I'm know how frustrating and embarrassing it can be to spring a leak. It seems to occur when I least want it to. Like being in a hurry or late for an appointment. Just bought sure seals to try.

    Let us know what the Dr. says. Sounds like they should extend the stoma further out. Good luck
    Those things we keep trying to do get easier not because the feat gets easier but our ability to "do" gets better.
    Thyroid cancer removed 1988
    Stomach problems finally figured out 2001 Crohn's/Colitus
    Tried every drug without much success
    Colon/rectal cancer removed Aug 2009
    6 Grown kids, grandkids and a great husband to keep me busy


    Beliveau
    New Member


    Date Joined Jan 2010
    Total Posts : 6
       Posted 2/20/2010 11:39 PM (GMT -6)   
    Hi Beverley -

    Life with a misbehaving Ostomy can be the ultimate test of patience!

    Where is your abcess in relation to the stoma? Is it draining under the flange? Is that contributing to the problem? Have you changed soaps? Are you using tissues with lotion around the stoma?

    My stoma is pretty well flush with my tummy so I only get about 3 days between eqpt changes, but it really sounds like there is something else causing your leaks ... "stool refusing to drop down" - are you having problems with pancaking?

    Unless your stoma is really retracted, there should be a solution, however, I think your best plan of action may be to call the Customer Service Depts at Convatec & Hollester (or whosever products you use). They are fabulous! Explain what's happening & ask for their suggestions. They are really good at asking the right questions to figure out what is causing your problem. It may be as simple as you need a flange with more Convexity. Ask for samples, as they're more than happy to send something for you to try.

    If you need phone #'s - let me know.

    Best to you -

    Merrill
    Merrill
     
    Female, 54
    DX Crohn's Disease 1976
    Ileostomy 1980
    Decade spent fighting fistulas leading to butt amputation (yes, really!)
    Resection/Noble Plication 1995
     
    Just call me "Barbie Butt"
     
     
     


    Equestrian Mom
    Veteran Member


    Date Joined Mar 2008
    Total Posts : 3115
       Posted 2/21/2010 4:28 AM (GMT -6)   
    Beverly (((HUGS))) you've got a lot going on right now...but it sounds like you already figured out what is going wrong...your hernia along with the retracting stoma sounds like the issue!

    What does your doc think about the hernia returning? If your stoma therapist's only suggestion is to make sure you are wearing a belt, you may want to find another! Any time a patient has surgery on their stoma the likelihood that the stoma changed, exists...and the product you've always used may not be as effective.

    It sounds like you need to start with the hernia/retraction issues and see what solutions can be offered (by both your doc and stoma therapist). Hang in there!

    damagedgoods41
    Regular Member


    Date Joined Sep 2009
    Total Posts : 377
       Posted 2/21/2010 6:25 PM (GMT -6)   
    Hello and thankyou all for ur reply's your all very kind!! Again thismorning i got up and as soon as i took a step and again was covered in poo and it gets me very distressed because when i take the baseplate off it's ripping my skin off and is bleeding and sore and im gettting to the point of not being able to cope with it anymore. Before his started i used to get atleast 5-7day's with a baseplate and changed the bag every day. Im using hollister deep convexity with an eakin seal then i put hydroframes around the edges to try and help with the leakage but to no avail??? Ive spoken to my stomal nurse and she say's make sure you wear ur belt at all times so that it maks the stoma push out but it's not working and she's not listening to me. She must think i enjoy whats happening with me as she is of no help whatsoever and ive had enough.
    Ive tried a one piece appliance but they just fall off my tummy when it gets a little bit full and ive tried every bag on the market and the only one that ive ever had any success with is HOLLISTER deep convexity 2 peice and under the base plate i wear an eakin seal to see if it stops my leakage but it just doesnt work anymore. Im at the point that i will not go out anywhere as im so very scared about leakage in public which has happend a few times and it just devastates me and all i do is cry as its so very embarrasing. Im also scared that i might have to go through more surgery for the hernia again and after the last hernia repair i ended up with a huge abcess and also got peritonisist and ended up having another emergency surgery and lost another 10cms of my small bowel and im scared this is going to happen again!!!! I feel so alone with all of this going on and i have nobody to talk to about how im feeling,as nobody in my family talk to me about anything as they are all very s
    elfish people.All they care about is themselves. Im sorry if im rambling on as there are people so much worse off than i but it still hurts like hell. Thanks for listening and i appreciate all of the reply's to me so thankyou all again.
     
    sincerly,
     
    Beverley.....cry eyes cry eyes
    Permanent ileostomy,radical hysterectomy & bi-lateral ophrectomy,bi-lateral mastectomy,atonic bladder.
    DX chronic depression,bi-polarr11,panic disorder & o.c.d.!!!
    Currently taking Avanza 30mg,Abilify 20mg,Seroquel 200mgs,Asprin,Valium 5mgs & Sandrena HRT gel 1.0mgs
    Strive to be a success but rather to be of value!!!!!!!
     
    Dont count the day's,make the day's count!!!!!!
     
    No more revenge now;I will think upon revenge!!!!
  • I dont knowthe key to success,but the key to failure

    is trying to please everybody!!!!!!!!!!!

    Life becomes harder for us, when we live life for others!!!

    Without music, life would be a mistake!!!!!!!!!

    Im not young enough to know everything!!!!!!!!

     

     
     
     
     
     
     
     


    Chasblah
    Veteran Member


    Date Joined Feb 2007
    Total Posts : 788
       Posted 2/21/2010 9:15 PM (GMT -6)   
    I'm so sorry Beverley.
    My skin cringes for you :(
    Maybe it's time to experiment with some other brands. Call coloplast and get samples of their convex appliances.
    I have to alternate between hollister and coloplast.

    Don't let yourself get beat down. You WILL get through this.
    Remember how it was at the very begining.........I bet it sucked then too.
    You just have to find a system that works and things will get under control again.
    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)
    i only take vitamins now, when I WANT to. :)
    (temporary ileostomy....maybe)

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


    darksky602
    New Member


    Date Joined Jun 2009
    Total Posts : 15
       Posted 2/22/2010 4:30 AM (GMT -6)   
    I am new around here, I just started having problems with my ostomy again a few days ago so I figured I would read through the site. I won't get into my medical issues background much but I and my father both have ostomies and I had a strangled intestine fro a hernia a year ago. After my surgeon fixed it, my stoma sunk in deep and I was getting leaks constantly and I was pissed. I had finally found something that worked and was getting back to a normal life. This also happened at the same time as my father's surgery to remove his colon. We both had tons of leakage just like what you are describing, and I finally started using the convex hollister 2 piece system 18183 and 14803 for both of us. Never had an issue again. But my dad's pouches wouldn't stick right (at first) so I had him use NO STING liquid bandage around the ostomy in three layers, apply one layer, let dry, second layer, dry etc. (be careful if you have a bad infection there and consult doctor first) Then I always clean around the stoma and bag area with alcohol pads to remove any extra left over adhesive. (this works for some people, others it messes with their skin so be careful. If it does hollister says only use dial bar soap to clean around bag area) After a week or so everything started sticking right. I hope this helps.

    PS- honestly until i started really cleaning the bag area with alcohol pads before I put on a new pouch I had issues with leakage. I know some people say never use alcohol pads to clean the skin there but it has worked for me.

    Equestrian Mom
    Veteran Member


    Date Joined Mar 2008
    Total Posts : 3115
       Posted 2/22/2010 5:16 AM (GMT -6)   
    Beverly~please ignore the incompetence of that 'stoma therapist' and go directly to your doctor! It sounds like you have been suffering skin damage with these leaks to the point of pain and that is just not right!!!

    They need to see the situation first hand...and go from there. If that means surgery to correct things, we'll be here for you, but DON'T live with this pain for fear of that...please...it's not doing you any good staying home like that:(

    PLEASE go today (or tomorrow since I think you are in Great Britain) and let us now the outcome...we are here for you....don't suffer....((((HUGS))))

    Allison77
    Regular Member


    Date Joined Feb 2005
    Total Posts : 421
       Posted 2/22/2010 1:26 PM (GMT -6)   
    darkysky!!!!! What a GREAT idea...Im running to Shopper's Drug Mart right now and am going to try that. I too have tried a bunch of things and Oscar is great for a week or two and then everything fails. Dealing with skin break down and bleeding today. ICK. Not what we need before we leave for a mini vacay on Friday.
    Beverley- hang in there darling!!! Please always remember YOU ARE NOT ALONE!!!!! There is a huge support group of people that care about you right here. Im one of them!! *hugs* Call your dr. today, do not put up with a stoma nurse that gives you the same song and dance. Let us know what happens ok??

    -Allie
    -Allison
    RX Crohn's 1999, over 30 surgeries, 3 strokes, permanent colostomy and rectum removal.
     
    "The most unfortunate thing that happens to a person who fears failure is that he limits himself by becoming afraid to try anything new."


    damagedgoods41
    Regular Member


    Date Joined Sep 2009
    Total Posts : 377
       Posted 2/22/2010 7:33 PM (GMT -6)   
    Hello back again and thankyou all again for all the help your all giving me. Well what a horrible night i had last night i woke at 2.20am in the morning due to a foul smell of fecal matter,i got up very quickly and by the time i stepped into my bathroom i had fecal matter all the way down to my ankles and id only had the appliance on for 12 hours. When i was trying to get the baseplate off it literally pulled my skin off with it and am now fully excoriated,red raw and bleeding and it's relly starting to get me very depressed!! Thismorning ive made a few phone calls to try and get some help with all of this going on and get told the same thing over and over. I have tried everything possible and it's still not helping me one bit. I have an appointment with my g.p. tomorrow and all he will do is refer me to a colorectal surgeon again as he now's nothing about stomas ect??? My fear is that i will have to go through more surgery and after the last two that i had with huge complication's is scaring the hell out of me and dont want to go down that path again.
    Also Darksky602 i wanted to let you know that i use exactly the same products as you do and the appliances used to be wonderful and i could get away with changing the baseplate every 5-7 day's and now i dont even get 24hours out of them. Ive tried cutting the basplate a little bigger,i also use hydroframes around the whole baseplate then i put tape around that as well to try and stop the leakage but when i leak it just pushes the whole lot off regardless of what i do. I dont know where to turn anymore and am so unhappy as all i want to do is cry. Ive totally had enough and im so very tired as i can never go into a proper sleep anymore as im alway's thinking about when im gonna leak again. Thanks again to you all for ur input it really means alot to me. I will keep you updated after i see my doc tomorrow.Thankyou again.
     
    sincerly,
     
    Beverley....cry shakehead
    Permanent ileostomy,radical hysterectomy & bi-lateral ophrectomy,bi-lateral mastectomy,atonic bladder.
    DX chronic depression,bi-polarr11,panic disorder & o.c.d.!!!
    Currently taking Avanza 30mg,Abilify 20mg,Seroquel 200mgs,Asprin,Valium 5mgs & Sandrena HRT gel 1.0mgs
    Strive to be a success but rather to be of value!!!!!!!
     
    Dont count the day's,make the day's count!!!!!!
     
    No more revenge now;I will think upon revenge!!!!
  • I dont knowthe key to success,but the key to failure

    is trying to please everybody!!!!!!!!!!!

    Life becomes harder for us, when we live life for others!!!

    Without music, life would be a mistake!!!!!!!!!

    Im not young enough to know everything!!!!!!!!

     

     
     
     
     
     
     
     


    darksky602
    New Member


    Date Joined Jun 2009
    Total Posts : 15
       Posted 2/24/2010 8:21 AM (GMT -6)   
    From what your saying it sounds like the skin is so damaged it is excreting (whatever the skin excretes when it heals and that is causing the pouch to come loose and leak. I am not sure what to tell you here but I am going to toss out some ideas and maybe we will get lucky.

    Currently I am dealing with a possible strangled intestine, or blockage and have switched to 3 slimfast a day. By doing this i am able to control and see how much and when i am going to have to empty. After a day or two of this "liquid" diet (depending on other health conditions ask doctor first before trying this) since the liquid would pass quickly through you most likely, you would be able to keep alot of stool from sitting on the damage skin area and give it a chance to heal. Others with this issue and many other ostomy problems have tried fasting as a solution. This idea is scary because some people just should not fast, that i why i do the slimfast to get me through these tough spots.

    Another idea depending on your situation is trying to thicken up the stool so it isn't as liquidy and won't try to find its way into areas to leak as easily. (Do not do this to the point of a blockage, consult your doctor on the proper amount of immodium needed to do this safely)

    Over my short time of 3 ish years dealing with pouches I have tried some off the wall stuff. I have tried heating up the base plates with a hair dryer and gently heating the skin around my stoma so the adhesive would melt a little and make it easier to stick as it dried. This worked great for a long time, and then my skin just got used to the bags and I am okish now. (since you are having skin issues be very careful of heating up the base plates because burning yourself would make the situation far worse, and take it from me it is not pleasant to be burned there, I made that mistake once.

    waking up to a mess out of a deep sleep and not getting enough sleep makes the situation worse. What we need when these situations happen are answers, but sometimes we need damage control even more. I slept on SHAMWOWS and towels for 2 years straight just in case i leaked, and I did sometimes. It made clean up so much easier and I just laid down more shamwows and went back to sleep after I tried to fix the bag. I once in the beginning went so far as to sleep an heavy strength garbage bags, I still woke up with a mess, but it was more controllable, and just that little bit of control I was able to take back gave me strength.

    andorable
    Veteran Member


    Date Joined Jun 2005
    Total Posts : 981
       Posted 2/24/2010 9:05 AM (GMT -6)   
    Don't you guys use wipes to remove your appliances? I couldn't possibly dream of just pulling my pouch off without some sort of lubrication to ease it off. Anyway I agree with the others, you need to see another stoma nurse and get this sorted, I'm not surprised your at your wits end with all that going on. I really feel for you and hope you get some relief soon. You probably do have some excretion from your skin and thats why nothing will stick. I have only had my stoma for 12 months and only had leaks twice in that time and that was when I first got out of hospital, so I am very lucky. I have had to make some changes as my stoma size changed as everyone does but one product I have found to be fantastic is the dermacol stoma collar made by Salts Healthcare product code DC23. Hope you get some help soon. Let us know how you go. Take care

    damagedgoods41
    Regular Member


    Date Joined Sep 2009
    Total Posts : 377
       Posted 2/24/2010 9:13 PM (GMT -6)   
    Hello again and thankyou all for ur very kind reply's to me. Im still not getting anywhere as yet. I have tried all different ways of putting my appliances on but they are still only lasting about 12-24 hours :(. And as ive said before i used to be able to get away with changing my baseplate every 5-7 day's with hardly any leakage,so am very confused as to why this is happening?? Also my skin is getting worse and is constantly weeping and bleeding. I didn't see my doc yesterday as i was leaking so much that i was to scared to go out of the house so i spoke to him on the telephone and he wants me to write down and keep a journal in regard's to my leakage. He wants me to write down the time that i leaked,how long it took me to clean myself up ect!!! Then after a week he will have a look then refer me onto a colorectal surgeon for a surgical revision,which im not very happy about as im so very scared to go through anymore surgeries as ive had enough and every time i do have an op i end up with infections,abcess or peritonitis!!! I dont think i will be able to cope having another op as it will be my 46th op from the age of 23 yrs and am now 41yrs and i think that's enough for a lifetime.
    Again i thankyou all for ur input and great advice and i will certainly try some of the things that other ostomates do and will see if there are any changes!!!! The first thing im going to do is starve myself so that i have no output at all then atleast i will have a bit of a rest and my skin might start to heal again. All i can do is try,try and keep trying and hopefully avoid another op!!! I will keep you all up to date with what goes on ok.
     
    sincerley,
     
    beverley-damagedgoods.....sad eyes sad eyes
    Permanent ileostomy,radical hysterectomy & bi-lateral ophrectomy,bi-lateral mastectomy,atonic bladder.
    DX chronic depression,bi-polarr11,panic disorder & o.c.d.!!!
    Currently taking Avanza 30mg,Abilify 20mg,Seroquel 200mgs,Asprin,Valium 5mgs & Sandrena HRT gel 1.0mgs
    Strive to be a success but rather to be of value!!!!!!!
     
    Dont count the day's,make the day's count!!!!!!
     
    No more revenge now;I will think upon revenge!!!!
  • I dont knowthe key to success,but the key to failure

    is trying to please everybody!!!!!!!!!!!

    Life becomes harder for us, when we live life for others!!!

    Without music, life would be a mistake!!!!!!!!!

    Im not young enough to know everything!!!!!!!!

     

     
     
     
     
     
     
     


    darksky602
    New Member


    Date Joined Jun 2009
    Total Posts : 15
       Posted 2/24/2010 11:41 PM (GMT -6)   
    I am sure you know this, but just in case I just wanted to throw this out there. When fasting you are still going to generate ostomy output from burning fat stores, it will be minimal, but it will happen. Also you still need water and make sure you keep track of how much water you are taking in. We all need to stay hydrated because dehydration is just another fun trip to the hospital and can be dangerous. I also recommend taking in a safe amount of vitamins just to help keep your body absorbing some of what it needs, watch out for vitamins that have high percentages of vitamin C as it can have a dehydrating effect if you get a vitamin that builds in 400-800% of daily vitamin C. I hope some of this info helps and stay safe and I will be thinking of you.

    Equestrian Mom
    Veteran Member


    Date Joined Mar 2008
    Total Posts : 3115
       Posted 2/25/2010 7:03 AM (GMT -6)   
    Beverley~the output you will have when you fast will be VERY hard on your skin:(

    I really wouldn't accept your doc's instructions to 'keep a diary' for a week! based on your description of your stoma AND hernia you need a revision. I know you are apprehensive about another surgery, but you ARE SUFFERING unnecessarily with a recessed stoma.

    You really need to see your doc so he can send you to the C/R Surgeon asap!!! I know it will be hard with the leaking, but you can do it, wear a pair of adult diapers if needed, but get to the doctor...You have the strength...from reading your signature you ARE a STRONG person!
    Crohn’s dx 1989
    some terrible years before my
    Proctocolectomy in 2008


    pam222
    Veteran Member


    Date Joined Jun 2009
    Total Posts : 985
       Posted 2/25/2010 8:49 AM (GMT -6)   
    If the skin is weeping and bleeding, it is very hard to get the appliance to stick properly, which means you will leak quicker the next time. This is what happens to me anyway. It's a vicious cycle. The sooner you leak, the worse the skin gets, and the worse the skin gets, the sooner you leak
    26 year old female
    Diagnosed with unspecified UC 11/08
    Asacol, Prednisone, 3 infusions of Remicade with no success
    8/09 colonoscopy shows that the whole colon is affected
    12/18/09 First part of J-Pouch surgery; recessed stoma
    12/30/09 Second part of J-Pouch surgery too soon; fistula
    1/9/10 Second Ileostomy Surgery with sparing of the J-Pouch
    1/25/10 Stoma Revision Surgery and Fistula Repair
    Now just trying to hold out as long as possible until we can try the next surgery
    Imodium (4/day), Questran (3/day)


    damagedgoods41
    Regular Member


    Date Joined Sep 2009
    Total Posts : 377
       Posted 2/25/2010 6:56 PM (GMT -6)   
    Hello to all again just another update. Ive spoken to my doc again and he has said he wants to wait out the week with me using a journal and ive told him im not happy with doing that but he say's that's the plan and he wont change it?? So i have to continue to suffer and i dont think he really cares how i feel. I also receievd some appliances and creams and stuff yesterday from Dansac,Coloplast and Hollister. Ive tried using the skin cream which your supposed to be able to use under the baseplate after you have rubbed it in well until dry,but the plates will not stick?? Everything im trying isn't working at all and have come to the conclusion that it's enevitablethat i will have to have the surgery to rectify my problem which is a stoma that is again being pulled in and strangled by my hernia which is exactly what happened 8 months ago so am back to square one again!!!! Im just so sick of it all and it doesn't help when I suffer chronic depression,bi-polar and o.c.d as it's really starting to affect my mental health as well as my physical health.
    Thankyou all again and will keep you all up to date with what happen's.
    Also is there anyone out there that can put me onto a good cream that can be used under my baseplate any information would be much appreciated.  Im very frustrated,sore,confused ect!!!!!!!!!
     
    Sincerly,
     
    Beverley-
    damagedgoods........shakehead eyes
    Permanent ileostomy,radical hysterectomy & bi-lateral ophrectomy,bi-lateral mastectomy,atonic bladder.
    DX chronic depression,bi-polarr11,panic disorder & o.c.d.!!!
    Currently taking Avanza 30mg,Abilify 20mg,Seroquel 200mgs,Asprin,Valium 5mgs & Sandrena HRT gel 1.0mgs
    Strive to be a success but rather to be of value!!!!!!!
     
    Dont count the day's,make the day's count!!!!!!
     
    No more revenge now;I will think upon revenge!!!!
  • I dont knowthe key to success,but the key to failure

    is trying to please everybody!!!!!!!!!!!

    Life becomes harder for us, when we live life for others!!!

    Without music, life would be a mistake!!!!!!!!!

    Im not young enough to know everything!!!!!!!!

     

     
     
     
     
     
     
     


    ducridr
    Regular Member


    Date Joined Apr 2008
    Total Posts : 139
       Posted 2/25/2010 9:49 PM (GMT -6)   
    I'm so sorry to hear that you are going through such a horrible time. Have you tried the liquid antacid solution under before you put your wafer on? I'm sure someone can chime in with the best way to do it. My only recollection from what I've read is get one w/ no flavoring (something like Maalox or Kaopectate), let it sit and pour off the clearer/thinner liquid that's on top. You may have to do this more than once. Then use a qtip to put a layer of the thicker liquid that is left in the bottle on your skin. Let it dry completely - then put your appliance on. If you check on Jpouch.org there is a thread started by Blenda that has a lot of possible solutions as she had a lot of skin troubles also and couldn't keep a wafer on. There are adhesiveless wafer systems if your skin gets too bad - I think that Nu-Hope makes one of them. I was also told that you could use the wafer with a wide belt and just put gauze under the wafer so that it isn't actually set to stick to your skin but rather is kind of held on by your belt. I'm not sure how well it would work with a convex appliance but I would guess it would be a similar setup - w/ some barrier (adapt or sure seal) under it if needed. I never had to try it since my issue ended up being that I had an allergic reaction if I didn't use adhesive remover to remove my wafer and any excess adhesive. My ostomy nurses said that it was a possibility if my skin issues were being caused by my adhesive allergies. Are you possibly allergic to the adhesive in your wafer? I know that the Maalox solution has bee used successfully by many people. I have horrible problems if I don't use an adhesive remover so that might be something for you to try - just be sure to wash/rinse it off completely. Also - I have learned to push my skin away from the wafer rather than pulling the wafer off which greatly reduces the pain and unplanned skin removal.

    Good luck! I hope you find something that works for you and allows your skin to heal.
    Ducridr - 36 - female

    Diagnosed w/ severe pancolitis 11/20/2007
    Asacol - 6 (400mg) 2x/day, Xifaxin 2 (200mg) 2x/day, Prednisone 15 mg (started at 40mg Nov 08 - off June 09), multi-vitamin, calcium and vit d supplement, potassium supplement, B-12 supplement, Junel FE (BCP),metamucil capsule (1/day) Coumadin (for blood clot) 5mg/day, 1st Remicade treatment 2/4/2009, 2nd - 2/18/09. Currently getting Remicade every 4 weeks.

    J-Pouch surgery #1 of 3 on 8/21/2009!!!
    Surgery #2 on 1/4/2010


    pam222
    Veteran Member


    Date Joined Jun 2009
    Total Posts : 985
       Posted 2/26/2010 6:41 AM (GMT -6)   
    The Maalox does work. It feels very soothing. For me, I can't use it much because it doesn't dry fast enough for me and I have only seconds to get a new wafer on before my ostomy acts up.
    My otomy nurse said they used to always use Maalox back before the skin preps and other things existed
    26 year old female
    Diagnosed with unspecified UC 11/08
    Asacol, Prednisone, 3 infusions of Remicade with no success
    8/09 colonoscopy shows that the whole colon is affected
    12/18/09 First part of J-Pouch surgery; recessed stoma
    12/30/09 Second part of J-Pouch surgery too soon; fistula
    1/9/10 Second Ileostomy Surgery with sparing of the J-Pouch
    1/25/10 Stoma Revision Surgery and Fistula Repair
    Now just trying to hold out as long as possible until we can try the next surgery
    Imodium (4/day), Questran (3/day)


    damagedgoods41
    Regular Member


    Date Joined Sep 2009
    Total Posts : 377
       Posted 2/26/2010 5:51 PM (GMT -6)   
    hello again to you all just letting you know that im going to try using the Maalox and also try Kayamagma which is another one that you put on the whole area and wait for it to dry then attatch the wafer?? Gosh something has got to work for me if not i will have a nervous breakdown.:( I also really wanted to go out today to the victoria market in Melbourne but am to scared to leave the house still as all i think about 24/7 is LEAKAGE!!!!! It's taking over my day to day life and im so tired of it all.
     
    Sincerley,
     
    Beverley.....
    damagedgoods......
    Permanent ileostomy,radical hysterectomy & bi-lateral ophrectomy,bi-lateral mastectomy,atonic bladder.
    DX chronic depression,bi-polarr11,panic disorder & o.c.d.!!!
    Currently taking Avanza 30mg,Abilify 20mg,Seroquel 200mgs,Asprin,Valium 5mgs & Sandrena HRT gel 1.0mgs
    Strive to be a success but rather to be of value!!!!!!!
     
    Dont count the day's,make the day's count!!!!!!
     
    No more revenge now;I will think upon revenge!!!!
  • I dont knowthe key to success,but the key to failure

    is trying to please everybody!!!!!!!!!!!

    Life becomes harder for us, when we live life for others!!!

    Without music, life would be a mistake!!!!!!!!!

    Im not young enough to know everything!!!!!!!!

     

     
     
     
     
     
     
     

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