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This is the best website for people with an Ostomy. So much understanding.

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 immodium every four hours and be careful with what I eat. I do that! 
I am on constant vitamins, patches, ect.. 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 ya know it you’ll be ok. BTW, what kind of puppy? 

MeetAnOstoMate - 28,893 members
 

Thank you for the reply, know, I feel for those who may not have a reversal, or had theirs for years and can’t get it out of my head that it felt weird when I mentioned the reversal, as so many will live with this for life. I have had such a terrible time with mine, and so many hospital visits, that I have looked ahead and thought, “these are incredible human beings” that literally are a different kind and done of the greatest people with the best attitudes I have encountered.. god bless them. I truly mean that. 
I have a Australian Shepard pup named Bowie. After David Bowie of course hence her two different colored eyes.

 

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 

 


Lostmyglasslipper_77 wrote:

Thank you for the reply, know, I feel for those who may not have a reversal, or had theirs for years and can’t get it out of my head that it felt weird when I mentioned the reversal, as so many w...

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 lot's 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 game's we play. Alex who you have already met is the number one for humour. 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 ilieo. for 30 some years and use immodium 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 then 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 your 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, and 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 colour!  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 permanen t ileostomy for almost 60 years, and althought 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 a nd 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 w ithout a large intestine)  have more difficulty....    since we may not be producin g all the enzymes needed to digest the food we're eating...    He had my try the FODMAP  Diet (   google it)...   It's somewhat complicated, and you need to eliminate  many regular foods  and restart with b asics   (  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 carbinated drinks or artificial flavored drink)    and you see an d improv ement in y our  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 n o reaction one day, doesn't mean you may not have a reactionn another time..   I'm doing it for about a year now..... and  have had v ery 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 y ou......but it's the first one in about 10 months..   I can strill 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 dissapear,    but  obviously, it's still an active condition.   I d on'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 y ou.   Write if y ou wan t or need more info...    Look into t he Fodmap    diet, and it's 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 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 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

 


Lostmyglasslipper_77 wrote:

Thank you for the reply, know, I feel for those who may not have a reversal, or had theirs for years and can’t get it out of my head that it felt weird when I mentioned the reversal, as so many w...

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

 


MsHeisenberg wrote:

Hi. I have an extremely high output stoma too. This is due to the fact 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...

What do you use on the burns around 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.

 


Doe1mama wrote:

What do you use on the burns around 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.

 


Immarsh wrote:

Hi,   I'm Marsha   and I've had my permanen t ileostomy for almost 60 years, and althought I considered it "  high output",    it wasn't liquid,  and I rarely had a problem with dehydration...

I thought I took the prize for having an ileostomy for 50 years. Hats off to you at 60 years. I also wasn't having any problems until 3 years ago when I started to get a lot of pain in the lower abdomen below my stoma. The pain is always in the same place. I have had MRI's and CT scans and fortunately, my small intestine looks good. My problem was Chrons. The doctor said it's probably scar tissue which they can't do much about. The only thing they can do is to do surgery to remove the scar tissue which could end up causing more scar tissue. But a few weeks ago, I had so much pain I went back to the doctor again and she said she couldn't help me and flung the FODMAP diet at me. I started following it (not religiously) and the pain has really subsided. 

Recently, I watched an old rerun of one of those doctors shows and they talked about a condition called SIBO - Small Intestinal Bacterial Overgrowth. This can be determined with a breath test. If one has it, antibiotics can be given to kill the bacteria. I also started to think about anything I have done differently in the last 3 years to bring on this pain and one thing was that I added a daily antacid tablet every morning. One of the side effects to antacid tablets is that the small intestine doesn't have acid going into it to kill bacteria in the intestine. Bingo, I think that is my problem. I have tried to reduce the antacid I am taking but I then suffer from indigestion and heart burn.

When I asked my doctor if I could have SIBO, she said she didn't think so because I don't have diarrhea. I do sometimes but not like you do. Wondering if your problem could be SIBO?

I am in the process of changing my gastroenterologist. I'm too old and have gone through too much to continue seeing a doctor that isn't willing to go the distance with me to get to the root of my problem.

I hope this information can help you and that maybe you can go back to your doctor to check this out for yourself.

Good luck, Connie

 

Hello and welcome. For one thing, I am happy for you that the ostomy is transitional. I also have a high output ileostomy that I have had for 50 years. I do remember it took at least 6 months to a year to have everything settle down and heal. Sometimes, I do take Imodium, but my doctor doesn't like me to take it. Sometimes people eat a marshmallow to slow things down. I have tried this, but sometimes has an effect of blocking me. 

I don't understand why your doctor wants you to take Imodium. You also didn't say what caused you to have your ileostomy. So, just wondering if the original problem you had still exists. You also didn't say if your high output is diarrhea. If it is one avenue you might want to check out with your doctor is if you have SIBO - Small Intestinal Bacterial Overgrowth. There is a simple breath test to determine if you have this. If you do, then a round of antibiotics might clear it up.

Regardless, whichever way you go, best of luck in controlling this and also getting your reversal.

Connie

 


MsHeisenberg wrote:

Hi. I have an extremely high output stoma too. This is due to the fact 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...

Hi MsHeisenberg

I am sorry that you are going through this difficulty. I have not heard of Gastroparesis. What is it?

 


Doe1mama wrote:

What do you use on the burns around 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.

Gday , 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 qtip, dry it with the hair drier 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 drier to dry my peristomal skin. Not much point on my head as I'm bald😂🤣🤭.

Cheers Hope that helped someone a bit.

Ian🌹🌹

 


Doe1mama wrote:

What do you use on the burns around 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.

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 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 appliance stays on even better. I don’t know if OTC nasal sprays would work as well, worth a try. Good luck.

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