Struggling with electrolyte issues as a high output ostomate - seeking advice

Just saying hello to my fellow ostomates.
I'm new here.. found my peeps! 4.5 w/ ileostomy now and if I may be honest, (which I feel I can here) it's been more than hell with this bag.
I am a high output ostomate. I am constantly in the ER, having electrolyte issues over and over. First - potassium, then sodium, then calcium!
Anyone else suffer from these problems?
I have had it with my Dr. telling me to "take my imodium every four hours and be careful with what I eat. I do that!
I am on constant vitamins, patches, etc.. I still have days in bed- sometimes more than 3 days at a time, due to weakness from this.
I need to live my life! Bills don't get paid by themselves.. kids need Mom, I want to spend time with family and my beautiful baby puppy..

I had to put Yoga school off for now and still have 9 weeks before possible reversal.
Can someone offer up any advice?
And lastly- nice to meet you all. Seems like a very nice group of fellow ostomates here

Welcome. No advice on the high output since I have a colostomy, but having to deal with it for 9 more weeks sounds pretty easy compared to how long you've already dealt with it and what some on here have dealt with for decades. I understand the wanting to get back to a fairly normal lifestyle, I was at that point too not very long ago. One day at a time and before you know it, you'll be okay. BTW, what kind of puppy?

Hope everything works out for you and you heal quickly.

Thanks for the welcome, AlexT, and I appreciate it. Hope you are well and things are good for you. Have a good night.

Living with Your Ostomy | Hollister

Hiya

The only time that I ever have high liquid output is when I drink too much liquid. Could it possibly be your diet? I've got a permanent ileo. I've been through that whole dehydration thing, but that was before my ileo—so, I'm not sure I have an answer for you, just know that you can share anything you want with this group as we are all very supportive! Good luck and prayers to you.

Hi lostmyglassslippee.

First of all, welcome to the site. We are a great friendly bunch with lots of ideas/advice/tips and tricks. The best bit of this is that everyone who offers you any of the above-mentioned have been through it themselves, unlike medical professionals who are taught by books. Also, this group will have you laughing out loud with some of the banter and games we play. Alex, who you have already met, is the number one for humor. As if all that isn't enough, where or who else can say they have friends in every part of the world. XX

Hi Lost, I've had an ileo for 30 some years and use Imodium and food to thicken and slow the output. I also sip on water with a pinch of salt in it, but I also drink a variety of liquids: coffee, tea (both green and black), Gatorade that I mix from powder, and once in awhile I'll make fruit smoothies.

I have a high output ostomy and I feel your pain. I am, though, able to slow things down if I cut down on liquids, especially decaf tea and decaf coffee. Bananas are an instant stoma stopper for me. Yesterday was one of those days where I had constant liquid output no matter what I did but that was the exception to the rule. Today seems different. I'm sorry yours is perpetual but I'm happy for you that you are likely headed for a reversal. Try the bananas!

Hi Lost,

Welcome aboard, if only temporarily. Hmmm... you sound like another ostomate that they slapped a bag on, handed a couple barriers and bags... and said have a nice life. It amazes me how little info they provide new ostomates, even temporary ones, these days. So before we figure out what's going on with you we need to back up and get a little history. Let's play 20 questions...

Why did you get your ostomy? IE, what's the underlying condition?
Do you know what parts of your small bowel were removed, if any?
When did you have your operation? Are you saying 4.5 weeks ago?
Did they give you any guidance on how to stay hydrated without your colon connected?
Did they give you any guidance on how and what specifically to eat? What to avoid?
Are you working with an IBD Dietician (not Nutritionist) at the present time?
Have they done any testing (bloodwork, micronutrients, fecal fat, etc)?

Let's start there. And not to rock your world... but they tell most new ostomates they can be reversed... but they're being optimistic on purpose. Not saying you can't be... but it may be a little longer than you think... or worse, depending on what's underlying. But hopefully not, and if so we'll cross that bridge when need be.

;O)

Bob

Welcome.

Hi Lostmyglasslipper (love your handle!), I'm afraid I can't offer you any advice on the issues you are experiencing, but it sure sounds like you are dealing with a lot. You shouldn't feel odd about mentioning that you are having a reversal at all. For many of us, being permanent ostomates is not a curse at all, but actually a huge improvement to the lives we were living pre-ostomy. I am happy for you that this is just a temporary situation, but rest assured that for most ostomates, a very good quality, problem-free, and high-functioning life is possible. I certainly don't consider myself a hero!! I hope you get some good advice here to make your wait for reversal more comfortable.

I can only imagine how cute your puppy is, and I love the name Bowie due to his eye color! I love Aussie Shepherds!

Terry

Hi and welcome to the party!

I've had my ileo for 27 years and have had some issues with high output. The first thing I do is put electrolyte tablets in my water so I don't get dehydrated. Not sure what is causing your high output but certain foods will usually thicken my output, like potatoes, pasta, and bananas. I hope you find something that works for you! We are all rooting for you!

Good luck with everything!

Casper

Hi, I'm Marsha and I've had my permanent ileostomy for almost 60 years, and although I considered it "high output," it wasn't liquid, and I rarely had a problem with dehydration. I ate pretty much everything I wanted, remembered to chew well, and drink a lot of fluids especially during the summer. All was well until about 3 years ago, when I started to have bouts of "the runs," with the output being almost clear liquid, and often had cramps and pains with it. It could last for a few hours, and sometimes a few days. I finally went to a gastro dr. (hadn't needed one for 55 years) and he diagnosed it as a type of IBS. People who have a colon (large intestine) are prone to having it, but for us (those without a large intestine) have more difficulty, since we may not be producing all the enzymes needed to digest the food we're eating. He had me try the FODMAP Diet (google it). It's somewhat complicated, and you need to eliminate many regular foods and restart with basics (protein, bread, carb, etc) basically fodmaps are hard to digest sugars and carbs that are found in many common foods, fruit, tomatoes, lemon, lime, sugars/even artificial sugars. When you reduce your diet to some basic foods (no carbonated drinks or artificial flavored drink) and you see an improvement in your output, give it some time, a few weeks, and then add just one food at a time back. Each time you add something new, consider it a test, just because you have no reaction one day, doesn't mean you may not have a reaction another time. I'm doing it for about a year now, and have had very good results. I may get the "runs" for a few hours, every so often, but not for days at a time. And like you, I've had to be hospitalized to get fluids until the runs stopped. I actually am having an "attack" now, as I'm writing to you, but it's the first one in about 10 months. I can still drink water, so no need to go to the hospital, yet. If I can't hold fluids down, then I go to the hospital. This is all new to me, and I keep hoping it will disappear, but obviously, it's still an active condition. I don't even know what it is that I ate today, that caused the problem. Tomorrow will be oatmeal, eggs, and toast! Best of luck to you. Write if you want or need more info. Look into the FODMAP diet, and its explanation, it's really helped me manage the condition. Marsha

Hi. I have an extremely high output stoma too. This is due to the fact that I am unable to eat due to gastroparesis. I am on 24 loperamide (Imodium) a day and on restricted fluid intake. I am aware that if you're able to eat anything with gelatine in it, marshmallows etc. help... can't advise on other foods as like I said I can't eat. I get severe burns around my stoma due to the pure liquid output. Also, it's a good job I have insomnia as the bag needs to be emptied 3-4 times overnight. I completely understand how you are feeling and feel you have no life. Sending you hugs from the UK x

My husband has an ileostomy and had sodium issues. The ostomy nurse encouraged water, and too much water lowered his sodium levels. He takes salt tablets, but what really raised it was eating foods high in sodium. They are absorbed better than the salt tablets. Also, remember to eat smaller meals. It will help with the large output.

What do you use on the burns around the stoma? My husband has a really reddened area for the first time around his stoma when it leaked. I tried the powder, but then the appliance didn't adhere very well.

Regarding the rash issue, around the stoma. Long ago, I used the stoma powder, and I also had the problem of no adherence. That powder is no good.

To avoid leakage, that causes the itchy rash, I change my ostomy every 3 days. I use 35% isopropyl alcohol (70% cut in half with distilled water) to clean the surrounding area of the stoma. This eliminates the itch, and allows the rash to heal.

This system works for me. Perhaps you should try it, and do whatever modifications are necessary for your situation.

Ronald F.

G'day, I found the powder a dead loss too.

Makes sense really, sprinkle some powder on any surface and then try to stick something to it.

I use Mercurochrome every now and then when I have a rash or a red spot.

I just apply with a q-tip, dry it with the hair dryer after and slap the wafer on.

I keep it really simple, clean with water only, and I use a drainable one-piece bag with a Cera ring cut in half so it's like a slim washer. Stick the ring to the wafer first then make the hole bigger with my fingernail so as not to disturb the adhesive. I use a hair dryer to dry my peristomal skin. Not much point on my head as I'm bald.

Cheers. Hope that helped someone a bit.

Ian

My stoma nurse prescribed a steroid spray that is actually a nasal spray, like Nasacort. I squirt a little on a Q-tip and apply it to the reddened areas. Let it dry, then attach your appliance. For me, it works very quickly; one or two applications can heal up a mess! Also, for me, the steroid spray makes my skin a little tacky so the appliance stays on even better. I don't know if OTC nasal sprays would work as well, but it's worth a try. Good luck.