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

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,

 

damagedgoods

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

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

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.....

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.

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

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.

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.....

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!

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........

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