End Ileostomy Issues: Pain and Bag Leakage

HI ThERE I JUST HAD AN END ILEOSTOMY DONE ON 7TH SEPT 2010 HAD EVERYTHING TAKEN AWAY PLEASE CAN SOMEONE HELP ME MY BAG KEEPS LEAKING AND WHEN STOMA MOVES I GET PAIN BEHIND IT THAMKS ANY HELP WOULD BE APPRECIATED

Hey Bonnie I persevered with leaks when I first got my colostomy just purely and simply because I thought I could figure it out. Not a good decision on my behalf and the best way to put an end to problems like this is to talk to your stoma nurse. If you dont have one please look into finding one as they will be of great assistance.



Take care and I hope it all works out for you.

ditto on seeing a stoma nurse. I had leakage and problems and finding a good nurse changed everything. She fitted me with a better product, better adhesive, correct sizing, etc. Made all the difference.

I agree with Kenny and Orchid. The nurse will help you and can tell if there is something else going on. Mine had me try a few different products because after being home a few weeks, we discovered I had a hernia at the stoma and we changed to another product to fit around the stoma better. I use the Hollister 14202 flange and 18182 pouch. I have no pain at the hernia and she if I have pain then to go to ER. I have had my proctectomy/end ileostomy since June of last year.

Hello there Bonnyscots, ditto also. Have you talked to your surgeon regarding the pain ? That's the best qualified person to answer that. I had similiar pain on occasion, and it was my surgeon who fixed me, of course he 's a cheuchter from Aberdeen

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but he looked after this lowlander who came  from Tillicoultry

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.



Cheers Bob

How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

HI ALL THANKS FOR THE REPLIES MY STOMA NURSE IS GREAT AND KEEPS SAYING THAT I SHOULD NOT BE FEELING PAIN  I USE SENSURA BAGS BUT AM THINKING OF CHANGING THEM THEY ARE ONE PIECE  I HAVE NOT RECIEVED MY POST OP APPOINTMENT YET WITH CONSULTANT BEEN TOLD I WILL BE ABOUT 14 WEEKS POST OP BEFORE I SEE HIM AGAIN, BEEN TOLD TO DRINK MORE FLUIDS AS WELL BUT FEEL JUST MAKES DIAROHEA MUCH WORSE BUT THEN AGAIN BEEN GETING DEHYDRATED VERY EASY X X X

Hi there, i have had some similar problems mainly pain behind my stoma and under it when it is working and also sometimes when it is not. My stoma nurse also said i shoudnt be feeling pain. When i asked my gp and consultant about it they suggested that it may be because of the high volume and frequency of the output. This could be causing the bowel to spasm and giving you pain. I was given buscopan tablets to try and stop the bowel going into spasm, and they do help a bit. I also found that a hot water bottle or some form of heat under the stoma helps the pain. I have a colostomy-since may this year, however it is very active and produces a lot, so much so that my doctor claims it acts like an iliostomy. Also a wee tip that helps me stop the output from being so runny without taking imodium tablets is to eat jelly, marshmallows or sweets like haribo, seems to thicken it up a little! Worth a go and hey even if it dosent work its a good excues for a sweet treat. Take care x

Bonnie, I had the same problem and I went to two ostomy nurses and both put bags on me that lasted less than two days, one less than 6 hours.   Does your stoma stick out a lot or is it relatively flush with skin.   Mine is flush and I have best luck with coloplast convex long lasting two pieces with filter.   I also suggest you find a group (I use EDgepark) and you sample, sample  and sample some more.   A lot of folks recommend against glue but I use it a lot especially to fill in places where I have found that I leak. I sometimes have pain when I eat something too big.   Sampling is simple, you just call whoever you use and ask them for specific things you pick from their catalog and they will send you two or three free.   I used the old adage of keep trying until you find the right one.   Some companies such as Convex have nurses that will make suggestions over the phone.   I promise it will get better.   Something else that has helped me is taking either imodium or lomotil.  Both are available in generic.  I also use prevalite with food or drink to thicken my output.   Probably the best money I have spent has been a vitamix blender and a drink called Kefir.  I mix the Kefir with all kinds of fruit and it has helped me with kidney function and allows food to get to your cells instead of your bag.  I grind it all up in the Vitamix and then drink it.  Not to bad ofataste.  Just keep trying and don't get down/ I know a lot of folks that have what we have that are on anti-depressants.  In fact all I personally know are.

Bonnie I also wear ostomy secret underwear and a hernia belt with velcro that is cut specifically for my wafer.   Sometimes folks say I overdo it but I feel like the underwear and belt have given me my life back/   It holds my wafer tight against my skin and when I rarely leak it very seldom gets out of belt.    Sorry for all your problems

My best advice is to #1 look for an Ostomy Support Group in your area, go to their meeting and ask questions particular to your leakage. #2 Ask the group where you may contact an Enterostomal Therapist. If you cannot locate a support group, try to find an Enterostomal Therapist yourself by asking your hospital (ask at the nursing office only), or by going to their professional website: www.wocn.org

Please, please do not take medicine advice from anyone other than you practitioner. What works for one may have horrific effects on another due to comorbidities.

I wish you well.

John H. RN Enterostomal Therapist

I HAD AN ILEOSTOMY DONE IN JUNE 2008 AND HAD TO LEARN HOW TO ADJUST TO MY NEW FRIEND,THE STOMA AND OSTOMY APPLIANCE,WHAT I FOUND WAS THAT THERE ARE SEVERAL TYPES OF OSTOMY FLANGES WITH BAGS THAT WILL FIT OVER THE STOMA AND THE ABDOMINAL WALL THAT HOLDS THIS STOMA IN PLACE.

I USE HOLLISTER PRODUCTS,AND USED A FLAT FLANGE WHICH SEEMED TO LEAK AT NITE SO I SWITCHED OVER WITH  MY NURSES HELP AT THE TIME TO A FLOATING FLANGE WHICH NEEDS NO BARRIER CREAM ETC. BUT IT ALLOWS THE STOMA TO HAVE A LITTLE MORE SPACE TO WIGGLE AROUND IN,AND THIS TYPE OF HOLLISTER PRODUCT REALLY IS BETTER THAN A FLAT FLANGE.

ALSO I FOUND THAT THE FLANGES CAN BE  PRECUT TO THE DIAMETER APPROX. OF YOUR STOMA.MINE IS 1 AND 1/8 IN.ABOUT AND MY NURSE WILL CUT SOME OF IT OUT AT TIME OF PUTTING ON MY NEW OSTOMY FLANGE AND BAG.

ALSO GET USED TO PUTTING THE FLANGE ON WITH THE BAG ATTACHED,AS IT GIVES YOU MORE CONFIDENCE AND EXPERIENCE IN DOING IT WITH TIME PERMITTING.

DIET HELPS SLOW DOWN THE OUTPUT AT TIME OF BAG CHANGE,SO LOOK FOR THE FOODS THAT WILL THICKEN YOUR STREAM OF OUTPUT FROM THE STOMA.

EVERYONE IS DIFFERENT,AND EACH STOMA MEASURES DIFFERENTLY,BUT A LITTLE CARE,KNOWING AND PERSERVERANCE WILL HELP YOU COPE WITH THIS NEW ADDITION TO YOUR BODY.

I HAD A LOOP ILEOSTOMY DUE TO DIVERTICULITIS.

SO MUCH IS LEARNED FROM THE INTERNET BUT MORE FROM EXPERIENCE YOURSELF AND OTHERS TRAINED AS ET NURSES IN A CLINIC.

HOPEFULLY REMEMBER IN OUR PART OF CANADA WHERE I LIVE,THERE ARE 3 COMPANYS THAT PRODUCE OSTOMY FLANGES AND PRODUCTS.

IN THE UK,I AM SURE HOLLISTER PRODUCTS MAY BE THERE TOO.

HOPE THIS HELPS YOU OUT!

MIKE

Hi there, I would say, like the other posts, keep trying different appliances; I've settled on Convatec Esteem Synergy 2 piece (for the time being!).  I use a convex flange which does help with my leaks as my stoma is quite small and as soon as it's starts moving, it does often retract so the convex flange helps the output go into the bag rather than under the flange although not always!  If I feel the stoma retracting, I can sometimes push gently on the convex flange and it helps pop the stoma out again.  I would suggest you see a stoma nurse before trying convex though as they're not suitable for everyone especially as you're still having pain.  It is all trial and error with applicances and what you can/can't eat/drink; what works for one is useless for another but do keep trying.  From my experience, all the manufacturers are more than happy to send out samples (most are listed on the IA website).  Good luck and hope you find something that works for you!

Hi there,  I had the same experience.  Alot of leakage and tons of pain.  I have been working hard with the nurses and surgeon to determine that chronic pain sometimes just needs to be managed.

I worked closely with my nutritionist and stay away from foods I just can't digest.  That was hard because they are foods I love...so...... it made me feel worse that i couldn't be myself.  HAD TO CHANGE.  But ..the results are alot easier.  I went to convatec moldable flange and seals.  hugeeeeeeeeeeeeeeeeee difference.  not more leaks.  and I meditate for the pain.  sceptic at first but...............................it works.  can't go without it.  I'm learning to manage the pain rather than fight it.  You'd be surprised !!!!  

And I agree with the nurse that wrote in. Don't take any meds unless your doc says so.  I did.....................big mistake.

green tea also help soften it abit.

its hard to grasp but it statrs to make alittle sense after a while.  

i'm still working on it.

i'm tired of crying about it.

Do you have a lot of scarring?  I can wear a wafer about 24 to 36 hours due to a rather malformed stoma.  My stoma is retracted along the bottom border and protrudes along the top.  I tried moldables and the convex wafers and neither worked for me.  A good stoma nurse can help though;  mine started me on eakin rings.  I cut them in two and mold it around the retracted part.  I still can't wear a wafer longer than 36 hours--my ileu sets in the bottom of a huge, uneven scar but it beats what was happening before we started the eakin rings.



Speak to your doctor about the pain--sometimes the pain is from excessive scarring.  If it is, you may need medication.  If it is chronic, the right medication can really improve your quality of life.