Pain And Leakage

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bonnyscots

Hi there, I just had an end ileostomy done on 7th Sept 2010. I had everything taken away. Please, can someone help me? My bag keeps leaking and when the stoma moves, I get pain behind it. Thanks. Any help would be appreciated.

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KennyT

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 don't 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.
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Past Member

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.

Past Member

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.

nessy

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 similar pain on occasion, and it was my surgeon who fixed me, of course he's a cheuchter from Aberdeen but he looked after this lowlander who came from Tillicoultry.



Cheers Bob
 
Living with Your Ostomy | Hollister
bonnyscots

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 received my post-op appointment yet with the consultant. I have been told I will be about 14 weeks post-op before I see him again. I have also been told to drink more fluids as well, but I feel it just makes diarrhea much worse. But then again, I have been getting dehydrated very easily. X X X

Pami 22
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 shouldn't 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 from 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 with 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 ileostomy. 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. It seems to thicken it up a little! Worth a go, and hey, even if it doesn't work, it's a good excuse for a sweet treat. Take care x
Bear

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 the best luck with Coloplast convex long-lasting two pieces with a 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 too bad of a taste. Just keep trying and don't get down. I know a lot of folks that have what we have that are on antidepressants. In fact, all I personally know are.

Bear

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 the belt. Sorry for all your problems.

jjhallowell
Nurse

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 your practitioner. What works for one may have horrific effects on another due to comorbidities.
I wish you well.
John H. RN Enterostomal Therapist

2NDCHANCE
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 night, so I switched over with my nurse's 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 pre-cut 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 the 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 the 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 perseverance 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 companies that produce ostomy flanges and products.
In the UK, I am sure Hollister products may be there too.
Hope this helps you out!
Mike
Belle
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 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 appliances 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!
Past Member

Hi there, I had the same experience. A lot 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 a lot easier. I went to Convatec moldable flange and seals. Huge difference. No more leaks. And I meditate for the pain. Skeptic 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 helps soften it a bit.
It's hard to grasp but it starts to make a little sense after a while.
I'm still working on it.
I'm tired of crying about it.

car1951

Do you have a lot of scarring? I can wear a wafer for 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 them around the retracted part. I still can't wear a wafer longer than 36 hours -- my ileum 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.

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