Seeking suggestions for managing high output from ostomies

Hi all, this is my first post, so I'm hoping I'm doing it right. I have both an ileostomy and urinary diversion in the form of a colon conduit. I was very ill after both, but the ileostomy was the worst. The peristomal skin had abscesses, cellulitis, C. diff, E. coli, etc. As a result, my stomal skin is still in an awful state. I have high output from both ostomies, with about 3-4 liters on average from my urinary stoma and about 800mls to 1300mls of liquid bowel movements. I use a Convatec two-piece for my ileostomy and a Salts one-piece pouch for the urinary diversion. My skin is raw under the ileostomy. I'm on codeine and Imodium to try to slow down the output. In the meantime, no matter how much I try to get a seal using an Eakin ring and stoma paste on top in a circle around my stoma and then put the two-piece over it, the seal never lasts that long and it's really hard to change as it's so active. I'm on a low residue diet, but at this stage, I hate eating because it stings like crazy. I'm also on restricted fluids, including a liter of water with ten sachets of Dioralyte in it, and then I'm allowed 1 liter of tea, water, etc. a day. I'm so dehydrated in the mornings that I can barely lift my head off the pillow. I put out an average of 2.5 liters overnight. My sodium level is very low, as is my potassium, and my creatinine is high, and I'm putting out a lot more than is going in. I just can't seem to get a happy medium. I'm so tired all the time, and my GP is clueless about these things. The dietitians want to put me on IV fluids overnight, and my surgeons have said I may have to go back into the hospital to get the balance right. I'm sleeping all the time and then wake up with what feels like the worst hangover x 1000. It takes drinking the liter of Dioralyte and my meds and maybe an hour before I get the energy to get out of bed. Does anyone have any suggestions? Sorry for going on so long

You may need some more serious medicine to stop fluid loss. I take distilled tincture of opium which helps me retain fluid. It comes with a price - dependency - but it really works for me. I also drink a lot of Gatorade which is rich in potassium. You're losing too much fluid and I understand how weak you can feel when you wake up totally dehydrated in the morning. Keep pestering your doctors until they come up with something that works. If they don't, you should look for better doctors. Keep us posted on your progress.
P.

Hi Sinead, yes I totally understand about the site. I've sent off my $29 to become a full member. Just to let you know that you can't use the private chat until you get full membership but you can use the General Chat Room if you want, although I've never found anyone there when I'm on.

Sorry I can't help with your dilemma as my colostomy has settled down somewhat now and except for some new foods it doesn't cause too many problems. Primeboy's advice does sound good though, particularly when it comes to getting second opinions. It does seem hard to get a GP with experience in these matters. I can't say enough about my consultant though as he's been great for me and puts my mind at rest over everything.

But welcome along and here's hoping there's someone here who'll be able to help and we'll see you on the mend. God bless and take good care, Colm

Hi Sinead,
I have had some of the same problems that you have had and maybe I can lend some advice.

My first piece of advice is to get yourself to a gastroenterologist as soon as possible. I have found that GPs are not as learned in ostomies and fly by the seat of their pants. Also, an ostomy nurse (called ET nurses and WOCN in the U.S.) are very helpful in helping you get the correct appliances that will last at least 3 days.

When I first got my ileostomy, my output was constantly liquidy and a lot. In my case, my GI doctor found that I was drinking too many things to keep myself hydrated. I was drinking a lot of Smart water (which has electrolytes in it), Propel (a cousin of Gatorade), and nothing else. My doctor's theory was that my intestines were spending so much energy on digesting the electrolytes that they couldn't digest anything else; thus, everything was running right through me. I was emptying 15 to 20 times a day. I admit I don't know all of the liquids you mention you take in but if there is a similarity to what I had, you might want to check into it. Also, the fact that you have a urinary diversion may affect what is going on. A short stay in the hospital to get everything in balance is not a bad idea. It sounds like you are getting more dehydrated by the day and feeling worse and worse. Getting your blood levels of potassium, sodium, creatine, iron, Vitamin B, and many other things in the right level is crucial for you to even begin to get back on the right track to feeling better.

I have been on many anti-diarrheal medications as well: Imodium, Lomotil, Questran, Tincture of Opium. If you get relief from any of them, use them. But, I have found that if it doesn't work, don't use it. It's just another thing to worry about. You may be able to slow down and thicken up your output with diet.

My last piece of advice is regarding changing your appliance. I have had to change my wafer MANY times while my stoma was putting out stool. Here are some things that I have tried:
- A few minutes before you plan to change your wafer, eat 2 to 3 marshmallows. That will sometimes stop the output for a few minutes.
- Put an ice cube against your stoma for no more than 30 seconds. This will sometimes "shock" the stoma into not putting out for a small amount of time - enough for you to be able to put on the wafer to dry skin.
- Get the smallest tampon you can find. The ones for teenagers or light days are best. Get some KY Jelly. Put a drop of the KY jelly onto the tampon and stick the tampon into your stoma - not all the way in - maybe a fingertip worth. This will stop the output long enough for you to clean and dry the skin around your stoma. Remember there are no nerve endings on your stoma so this should not hurt. If it does, there is an issue that needs to be dealt with.

Do you use any kind of skin prep? I use powder and no-sting barrier. These protect the skin from getting more irritated as well as help allow the irritated skin to heal. Make sure your skin is dry before you apply the wafer. I use paste but the Eaken seals would work the same way. I put the paste around the hole of the wafer, making a kind of gasket to prevent leakage. I believe that is the reasoning behind Eaken seals as well. After you put the wafer on DRY, PREPPED skin, hold your hand over the wafer for a few minutes. This warms up the glue on the wafer as well as the paste/Eaken seal and they kind of melt together for a stronger, hopefully less likely to leak, and last at least 3 days adherence.

I hope some of the things I have gone through and used may be helpful to you. If even one suggestion works for you, it's worth it!

Best of luck to you and God bless!

Hi,

I don't think I will be much help, but I have had a urostomy for 11 years and the output has always been insane. In order to go anywhere, I have to be completely dehydrated. If I have fluids, my pouch is filling every minute or two. In all these years, I have never been able to get answers. If you find any, please let me know! I am so sorry you are going through so much. I hope the doctors get things worked out for you soon.

Carrie

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

It's taken a year and a half to discover what most WOC's don't seem to know.
1. Cut the cut to fit's as accurately to your stoma shape as you can. I use a moldable two-piece for my Urostomy. Where the skin isn't covered, try to dab on some skin prep AFTER the appliance base is applied. Helps preserve the healthy skin. JUST on the bare skin.
2. If you have any wrinkles or creases, stretch the skin and smooth it out while applying the wafer. If you don't, it's going to fail rapidly where the folds or wrinkles are. Premature failure drove me nuts from my surgery to about 2 weeks ago.

I forgot to mention.... Use an adhesive removal wipe or two to remove the wafer. Just pull up on the edge and run the wipe up and down the junction where it doesn't want to let go. At least that works for me. With high output like that, changing a bag must be really tough.

Hi all, thanks so much for taking the time to reply to my post. You seem to have had the same problems as I'm having. I'm on Lomital and Valliod, Imodium, codeine, Oxynorm, MST, and a lot more but still having no luck. My sister called over today and she was shocked and said I'd lost far too much weight and wanted me to bring my surgical team's appointment forward. I'm so dehydrated, it's killing me. I think you're right about getting the gastro team in on it. The thought of going back into the hospital kills me, but if I have to, I will. Everything I eat runs through me as well. Thanks for the tips about the bags. My peristomal skin is very bad at the moment, so thanks for the tips. I'll give it a go. I'm also restricted to a liter of electrolyte solution, a liter of tea or water, but good, it's hard to stick to it when my mouth feels like I'm eating sand. It's so dry all the time. Thanks for your help and I'll keep you posted. Love and hugs, Sinead.

I have a jejunostomy. It's a high output ostomy. On a good day, I lose about 3 liters. My dietitian always says tea/water are the worst things to drink. They say to just drink milk and Dioralyte. Most G.P's are out of their comfort zone with ostomies, especially complicated ones. There are a few specialist units in the UK that specialize in high output ostomies, but I'm sure your gastro team can help.

Hi Sinead...
My only advice is that you don't depend on a GP to get you sorted....my experience is that the only people who understand anything about these things are the specialists.... you sound like you are having a really bad time and the hospital is the best place to get a solution....
Hope you get sorted asap
Mike

Hi Sin....
Good to chat the other day....hope you are feeling better..... You mentioned you were going to chat to the dietitian today....hope you get something sorted...
Keep smiling
Mike

Guys, does the word Ileo-Gel with the high output? I can only rant so much about this wonderful gel. Liquids get soaked up so the liquid doesn't affect your skin so bad....

Ileo Gel Eackon Gel ARRRRRRRRRRRRRRRRRRRRRRRRRRRRR

Hi Sinead
Hope you are feeling a lot better since we spoke last
Mike

Hi everyone, thank you so much for all your help. You were all right, I was very lucky. A new dietitian was handed my file, looked at the bloods taken in July, and ordered me straight into the hospital. I was in real danger of heart and kidney failure. Badly dehydrated, sodium, potassium, electrolytes, and magnesium were on the floor. My output is far more than going in from both stomas. They've managed to bring the bloods up, etc., but the problem is still ongoing. They had to take me off the Dioralyte, and I'm on a 2-liter fluid allowance a day and enough meds to kill a cow. I was in the hospital for almost 3 months, and I'm back in tomorrow, so keep your fingers crossed. I'm on vitamin B12 injections every day to try and bring me back up to a normal level. God, it's been a long, unending journey. I'll let you know how I get on tomorrow, but thanks for all your replies. Love, Sinead.

Hi Sinead....
Great to hear you are getting sorted.....good luck tomorrow.

Hi Sinead,
How are you doing? Just to say I am thinking of you

Trish

Hi Sinead
How have you been? Hope you had a brilliant Christmas and New Year!!