Dealing with liquid ostomy output – OSTOMY TIPS (w/ video)

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I had previously written about dealing with thick ostomy output, but many ileostomates have the opposite problem: liquid output. In this post, I’d like to go over a few tips that you can use to thicken up your output. These tips apply to colostomates who have loose stools but are directed more towards ileostomates.

Video

Why Worry About Liquid Or Loose Output?

For the most part, there’s nothing really wrong with having liquid or loose output, but it does come with a few challenges:

  • liquid output is more likely to cause leaks.
  • liquid output can shorten the life of your wafer by speeding up erosion.
  • liquid output can clog pouch filters and/or leak through them.
  • emptying a pouch full of liquid can be messy (especially if you have mobility issues).
  • liquid output could lead to dehydration more easily.
  • a high-output stoma could mean that nutrients don’t have time to be properly absorbed.
  • you may need to empty your pouch more often than you’d like.

Causes of Liquid Ostomy Output

Ostomates with Short Bowel Syndrome are more prone to having liquid output with fast transit of their food through their small intestine, but there are other reasons which can cause it too.

Here are a few of the more common causes:

Dietary

The following foods and beverages can cause a dramatic change in your output’s consistency. You’ll likely be able to identify the culprit within hours of consuming them:

  • Coffee or tea
  • Sport drinks
  • Soda/Pop/Soft drinks (both diet and regular )
  • Fruit juices
  • Chocolate
  • Certain fruits (for me it’s cherries)
  • Artificial sweeteners
  • Alcoholic beverages (especially wine)
  • Fried foods
  • Hot/spicy foods
  • Non-vegan foods like dairy (or other lactose-containing food, if lactose intolerant)

For the most part, very few of the items listed are needed (or desired) in a healthy diet, so if you can cut them out, you’ll find benefits in more than one way.

Drinking with meals or drinking too much at one time can loosen your output too.

Laxatives, Medication & Supplements

Some medication or supplements can cause our output to become loose. If you are taking a laxative, it may also cause loose stools.

Antibiotics can cause liquid output (diarrhea) that tends to pass within a few days.  You may be asked to take a probiotic while you are on antibiotics to help balance out your gut flora.  Keep in mind that you should never stop taking antibiotics until you’ve completed the full course.

Viral or Bacterial

There are many types of bacteria and viruses that can cause diarrhea or liquid output. If you’ve experienced an unusual change in your output, you may fall into this category.

Blockage

When you experience a blockage, your body will try to flush out the blockage, which can result in liquid output. I didn’t have this at all for my last blockage, but many ostomates report having liquid output while they were obstructed. This will usually be accompanied by other symptoms that are typical for a blockage like abdominal pain, pain with peristalsis (this comes in waves as your gut tries to move things along), nausea and possibly vomiting.

If you suspect a blockage, you’ll want to contact your GI or head to your local ER.

For tips on preventing and dealing with blockages see THIS article.

Tips for Dealing With Liquid Output

Talk to your doctor if you suspect food poisoning or another bacterial/viral cause of your liquid output. As suggested above, if you suspect a blockage, you’ll want to contact a medical professional.

For “normal” causes, you might want to try the following tips:

Dietary

One of the most effective ways to deal with liquid output is to make a few dietary changes or modify the way you eat. Keeping your meals and beverages separate, or drinking throughout the day (rather than in one sitting) can help.

The following foods are also known to thicken ostomy output:

  • Starchy foods like pasta, potatoes, rice, white bread
  • Crackers
  • Potato chips
  • Applesauce
  • Bananas (especially when underripe and without spots)
  • Nut butters (peanut, almond, sunflower seed, etc)
  • Oatmeal

Most of these foods can be considered healthy, although don’t depend too much on the white bread, white pasta or chips if you don’t need to. I remember one fellow I spent a hospital room with had to consume several bags of potato chips plus Imodium to slow his output down because of his short bowel.

Gelling agents

A popular choice among ostomates is to use gelling agents in their pouch. These can come in tablets, powder, capsules (usually made with animal ingredients) or sachets, but they all work in a very similar fashion: Add the gelling product to your pouch as directed and it will thicken up when it comes in contact with your output. Here’s a demo of how gelling products work:

I’ve reviewed the ConvaTec Diamonds sachets, but I’ve also tried other products and they generally work well. You should be able to get samples to try.

Here’s a video of the Diamonds sachets in action:

Anti-Diarrheal Medication

Many ostomates will be told by their doctor or stoma nurse to take a product like Imodium to slow down their output. I would personally try this last if all other options failed, however, if you have a very high-output stoma which is causing ongoing nutritional problems or dehydration, this might be an option you’ll want to try until things get stabilized.

Fibre Supplements

This is not an option I’d recommend, nor is it something that your doctor is likely to recommend either. There are fibre supplements which can bulk up stool but they carry a risk of causing a bowel obstruction too. Do not try this unless explicitly told by your doctor.

Guar Gum

Guar gum is made from guar beans, but it’s been used as a thickening agent in various products for quite some time. There are claims that it has eight times the water-thickening effect compared to cornstarch, which is pretty impressive!

As a supplement, this often comes in tablets, but you should consult with your doctor to see if it’s a good option for you. Like fibre supplements, there’s a risk of slowing things down too much.

Consider Using a High-Output Appliance

If you find that your liquid output is difficult to manage when you’re wearing a traditional ostomy pouch, consider a high-output appliance.

These styles of pouches have larger capacities and are designed to better manage liquid output.

Coloplast Sensura mio high output click front
Front of the two-piece high-output appliance.

The product in the photo above is one of Coloplast’s high-output appliances. I did an overview of them HERE, and it may be an option worth considering.

Closing Thoughts

Some ostomates don’t mind liquid or loose output, like my IBD blogger friend and ostomate, Marisa from the blog JournalingIBD (a.k.a Keeping Things Inside is Bad for My Health). But if you’re one of the people who find liquid output to be problematic, then I hope the suggestions listed will come in handy.  In addition to the tips included above, you may also want to try using barrier rings or moldable wafers to help prevent liquid output from leaking under your appliance.

QUESTION: What do you do to thicken your output?
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Dona
Member

Hello Pam and welcome.I am very sorry to hear of you and your sister’s struggles. This is a real and ongoing challenge.I am not a health care professional.. so take what follows in that light. Always seek more advise from medical people. BUT…I think you need to break this down into two parts. One part of your problem is keeping your sister clean. Is she physically able to stand in a shower? ( none of us soak anymore).If so, then the problem is keeping the pic line and the ostomy bag dry during a shower.I have had great success with Glad Press and Seal:https://www.amazon.com/Glad-Pressn-Seal-Plastic-Food/dp/B0014D5NVS/ref=sr_1_1_sspa?ie=UTF8&qid=1532798267&sr=8-1-spons&keywords=glad+press+and+seal+food+wrap&psc=1I had a recent foot injury with lots of stitches that had to stay dry. And I have an ileostomy.I was able to wrap both my foot and my bag area ( with the bag attached) in press and seal and shower. Just empty the bag, and while lying down pull out a big enough piece of the plastic to cover that area ( like 10 inches or so). and PRESS it down over everything. It releases really well after.For the pic line ( which I have never had ..so bear that in mind) I think you could cover it in a couple of layers of the plastic sheet..first a smaller one, followed by a larger one. Press it down well over the whole thing and all the skin. This stuff does not stick to my ostomy appliance nor the pretty large scab on my foot.Try it on yourself first. Just stick it over a piece of gauze or something then shower.Maybe just getting clean would be a good first step in your sister’s ongoing care.Good luck. Let us know. Press and seal is available in any grocery store… I included the Amazon link so you could just see the package.( this should eventually be on another thread since its pretty off topic for the name of this thread).

Marcie
Member

 couple of garbage did the trick for me when my foot was injured.  simple…. no fuss n muss. :-)I know lets out this on a different thread!!! 

Member

Hi Dawn, you have adopted a great approach to help yer Mom and others as well. I wish you all the best

Member
Sarah

I have had my ileostomy since the beginning of December. I had a hysterectomy and the surgeon perforated my bowel, unbeknownst to me. I didn’t show any signs until about 4 days post surgery. By that time I was so septic I had stool all the way up in my mouth. Needless to say, I had to have massive abdominal surgery and a loop ileostomy put into place. I was in a coma for 3 days and the hospital for almost the whole month of December, which I barely have any recollection of. Getting to my point: for the last couple days I have been having very loose output, which is not usual for me. The last two nights I have had to get up 3-4 times to empty my bag. Yesterday it thickened back up a bit but today it hasn’t. I take lomotil twice a day and drink premium protein every morning. I have tried the applesauce and bread trick and they may have helped a bit but I am still dealing with a ton of output as of now. I called my surgeons nurse and she suggested increasing my lomotil and to take a fiber supplement, which I went and got. I told her that I could see my stoma and it was also descending at times. There is also a lot of erosion on my wafer now. She assured me it was ok, that this was common. Of course it was my docs day off so she will have to fill her in in the morning. I just changed my bag yesterday, which is something that causes me great anxiety. The nurse suggested I change it again but 1) I can’t get my stoma to not be active and 2) I am worried about what it will do to my skin. I have no more adhesive removers, they come tomorrow. I do have stoma powder if I need. I am hoping this is a temporary problem and will clear up soon but how do I change a bag when my stoma is active and what about my skin. I have no support or anyone to talk to about it so I am hoping someone can reply. Thanks for listening.

Guest
Betty O'Melia

I got a colostomy 15 years ago due to anal cancer. I had 35 radiation treatments and 3 rounds of chemo. No problems until last year. Had an emergecy surgery for a low bowel obstruction. Didn’t fix it or it happened again. I ended up using nutritutional supplemants thru a pic line and had another surgery 6 months after the first one. At that surgery they took out even more of my intestines. My stool have always been loose and I had a left decending ostomy. After the surgeries it was worse. Now I seem to have soft and liquid stool but not runny. It is very loose and soft. I have lots of gas and have had to change my bag more often and have had gas blow outs. This is all new for me after the surgeries. I use the eakin seal but have a hard time often getting things to stick since I have a scar that just about closes us my navel. Any ideas on the gas production and type of stool

Guest
Carmen

You can find some products to stick on your bags and take the gas out. air release vent for ostomy pouch. Online exprés medical supply, inc.
That are great. You will find great product there.

Member
Paula

I do not know if I am a special case or not. My doctor’s tell me I am special. I have trouble with watery output all the time and dehydration. I have more than short bowel syndrome. I was diagnosed with colon cancer in June 2016. They did surgery in October 2016 and removed the last 3 inches of my colon and put an ileostomy in. Due to prior surgery in 2004 I have less than 8 ft of small bowel and I has 3 inches of colon. The doctor put me on Lopramide and Tincture Opiate to try and control the liquid stools. It works so so. Besides the liquid output I also suffer from gas all the time which helps with the bag blows. It does not matter what I eat or do not eat it is a constant problem. We have been trying to find better bags but so far no luck with helping the situation. I had one episode where I went through 5bags in one day. Any suggestions?

Guest
Pam Hymel

My poor sister has the same problem and is now pretty much home bound because of it. She has no colon and very little small intestine left. She had the 1st illeostomy done in Dec. which at that time made her a Jpouch for later use. In April, the wen in to do reversal and the jpouch surgery was found to be a fail so they did the 2nd ostomy which is a nightmare from hell. She has a pic line and has to hook up to iv fluids daily to get a little hydration. Her ostomy runs constantly so between that and the pic line that can’t get wet, she hasnt bathed in months and says she is a freak. She is very ocd and NEAT/clean freak. This has caused her mental state to take a HUGE nose dive. Just no hope and no doctor wants to mess with her any longer. Oh did I say her problems began in 2007 when she had a botched gastric bypass and has had 17 surgeries since and 15 were life saving bowel obstruction surgeries. She is 54. 😭

Marcie
Member

w.  But it is your decision.Hi Pam, I went through this for a good year–now into year 4.  I go for I.V. fluids for dehydration also-  IT is a long haul.. And I am the same way with “the clean thing”  There are many medications out there, that may help her.  I am now on Gattex injections.  IT is new. helping me. But have some issues. If u go to “Marcie” member and read-she may feel at home about it.  Not alone.  Your health team or find another one–Which I have had to do also–Not every medications works for the same  person- but start a study so you and Pam get to know what is going on with some of these — Some medications like Gattex took me a whole year of study- it is necessary to understand as much as u can so your questions are answered correctly.  She may come out of this on her own. many do !!  I emptied a good 30 times a day the first year.  Now?  on a good day 10-15.  I advise sipping with a BIG WIDE straw of fluids.  You get more into you than you think !! Do NOT drink just water!! All water washes out the salts in our bodies = dehydration too!.. I know what she is going through.. My life is  going to infusion3 x a week.. And pray No E.R. visits during the weekend.  I had a pic line also did this at home too-  But on medicare and they pay in full for me to go to infusion.  I now have a power port.  So much to learn about our bodies and what they took out and what is left and what to do.   I bathed with a pic line.  Just if you sit nicely and soak..  Got to wrap it up well.  Just have to be gentle with yourself. What I did was, after wrapping u the pic line- I tied a string  at the middle and out it around my neck– Use no soap, or oils, At one time before the nurse came that week, i did this and added some salts to my bath- it was nice.  and she cleaned it real good.  So try this before the nurse comes in. Now the stomach tube? no- cant bath with that.  had that too.   But ask the nurse first.  she may have something else to add to this trick of bathing in the tub.    If u want to P.M. that will be fine.  OR go to the lounge– I will look for you there also.  She can get out– Grab a coffee can and go____  We r al in the same boat for travel– but some of us r in a different boat like Pam and I.  Just got to find a way around it.  She will enjoy her bath——  Also after a bath-change the pouch..  Best. Marcie.

Marcie
Member

Pam——–go to short bowel support group-she falls into this catorgory…….. I do also even tho I have my full small bowel. Go to Gattex support group  also- that is an education also..  Pam will feel at home there also.. There is education out there and it is a must to know.  Best to you both and she is lucky to have a sister that is in her corner. I was alone…… except this blog thank god!!! And other supports areas too-  it is a help– IT is what we need..  We find it  we learn it.. 

Member
Claire E Bennett

Bad leaks since J pouch surgery. inner ring helps a bit. Brands? food choice no help. awful itching and burn on burned skin.

Member
Claire E Bennett

Eaken site doesn’t work, wanted sample gel.

Guest
Christine

HI, my mum had an ileostomy 15 months ago.She has a permanent watery out put.She doesn’t eat well and has to take 2 ensure compact drinks [600 cals] a day.She takes immodium up to 16 capsules a day to no avail.She tends to be getting a lot of leaks or the bag bursting.She also gets lots of wind. Do you think the acid in the output could cause a weakness in the bags? She’s 84 and is hopeful it can be reversed but she is not strong enough yet in my opinion.

Member

Christine….I too am a 60 Yr. old Lady going thru some of the same things. I have had my bag since 2009 . I have learned that we really have to take extra time to allow for care of our bag system. Every time I tinkle, I empty my bag, every time I empty my bag in between tinkleing I tinkle! I get up on average once a night to empty my bag as my output is also atery and I wonder if the liquid gets into the mouth of the hole we cut in our bag and the acid in it eats at the seal. It must be something like that when you see what it can do to the skin. I have had to accept that sometimes there is going to be a leak and most of the time…not a leak.

It does become very tiring and time consuming. But the more I rotate my life around the bag, the more control I have. If I plan to go out, I allow extra bathroom time and am always checking the seal for leaks especially if I have a seat belt on. My stoma is right at my belly button level and my scars are really big. The length of my abdomen and wide. Apparently you can get a gel capsule to put in your Moms bag ahead of time and that will help gell the luquid output. See one of Erics seminars. He has lots of good informtion. Watch them again if you have already, and see what applies to your Moms needs. I had a lot of frustration when I first had my ileostomy, no one to support me or encourage me. But that does get better. I think it runs around the idea of controlling your bag verses letting the bag control you.

Because I am watery, I eat potatoe chips, the salt helps me stay hydrated and I still have trouble gaining weight. I find certain food really does cause problems and would suggest she start taking the time to write out when and what she eats and watch the output after. When I eat a meal, the meal is often in the bag within four hours. I seem to almost always be hungry. I can not afford to feed myself sometimes! But I have found that going back to the basics of eating foods that absorb liquid does help and constantly watching what is in my bag and if it is liquid or not helps. I still get a lot of bowel pain so I tend to eat smoother foods like potatoes, potatoes have magnesium. Magnesium can work as a laxitive, if your Mom takes a calcium tablets you may want to cut the magnesium in it. Only to avoid a blackage , I will sometimes take a magnesium tablet based on what I have eaten and how much. Six times since July, I have been in the hospital for a blockage and I went back to what I did in the beginning to avoid going back in again. That meant keeping a log of what I ate and what came out and even how my bag stuck to me. Now, sometimes I have had to take a hot water bottle and fill it with wam water to help my bag stick to me better then it does without it. When it is not sticking good is when I get the leaks I have discovered.

Does your Mom ever feel after she has put a new bag on that there is a part of it not quite stuck good enough to her tummy? This is why I took to useing the hot water bottle. Sometime it would feel like I had a plastic bag stuck to my belly and that it kind of felt like there was air between my tummy and the bag. Useing the warm water so I do not damage my stome does help the bag to stick better. Also, I use that powder that Eric talks about to help the sores have time to heal. It means that we have to take extra time to remove the bag by useing adhesive remover wipes to help slowly peel back the bag off our skin. But it is worth it. Right now, because I was so tired after Christmas, I have a half ring of sores where the bag was removed too hastilly from my tummy and now the sores need time to heal. Somtimes I have to cut some of the edge away from the extra C shaped tape I use to avoid having leaks colour my clothing and to prevent the tape around the ad that sticks to my tummy from rolling and also to prevent further sores. I have only once had a bag that never stuck right and that came off when I went to the bathroom, since then I use the water bottle to help adhere it better to my tummy.

It is also very important that when we do have to change our bag that we take extra care of our skin. This means cleaning it thoroughly and useing the skin barrier wipe cloth on it and allowing it to dry well also. I tired of constantly reaching for my supplies on the counter in the bathroom and so picked up a plastic three drawer high unit you can get at walmart or Candian tire. I keep all my supplies in that and then every thing is easier to reach while I sit down to do my bag. On the toilet ofcourse. I also always rinse my bg out after I empty it. I have two plastic glasses of water on the top of this dresser that I continually fill after I have emptied them for use the next time I empty my bag. I know that it takes 5 to 10 min. to deal with tinkleing and emptying and rinsing my bg and then putting a deaoderant in it and then finishing up, but that is fine. Somedays it may be every hour, some days less. I am retired and have little income, I still afford the tapes and the deoderant because it is importnt to me. If she buys a big bottle of deoderant, it can be hard to count out the drops, so I transfer some into the sample bottle I rec’d in a sample one day, and this gives better control over not useing too many drops as forty bucks for a bottle is expensive in my world.

Try to encourage your Mom along the way and tell her this is a new normal. I have found because I have only my son to help me out when I hit a huge snag, that he is not as interested in every detail, so it is hard to feel encouraged plus he does not know how to encourage me along this path. Your Mom is lucky that she has you by her side. I commend you for being there for her. You are a wonderful daughter!!! So here is a sum of a few things that I hope can help. Mom you are not alone and that is a blessing! Thank your daughter often if you do not already.

Start her with a clean slate on her tummy. Prepare a hot water bottle with warm not hot water in it. If it is too hot place a face cloth over her tummy to avoid hurting her Rose. I too named my stoma as a lot of people on Erics sight. She is Rose, as in time I saw that it was a very beautiful thing to have…verses what I dealt with before. Naming her stoma will give he a more of an ownership over it and they can become friends eventually. If she likes to call it thing…call it thing! refe to it as thing if she likes. From there, after the tummy is clean from debree I use small squares of “bar towels” you can buy at the dollar store and I cut them in 2 inch squares, place them in a zip loc bag and when I have a clean tummy, I wet one or two and rewipe my very sensitive skin and then pat it dry and give it tmie in the air. This helps with making sure there is not acidy output residue left on the skin. Then I use the skin barrier wipes cloth all over my tummy that gets stuck under the pad of the bag. Also I call it a plate. Allow that time to dry. I use the plastic from the plate to fan my tummy dry and hurry things along a bit. Then I apply the bag and then the C tapes and then the deodernt goes in the bag and then the hot water bottle. I lay down for this to alow even sticking. When it is time to empty the bag I always check for any sign of the bag plate or tape changing colour. If it is all still beige then I carry on. If not, then I change the bag. Then when it is time to change the bag again which for me is every two to three days, certainly more in summer, as I also garden. It will be very important for her to use the tape adhesive remover wipes to gently pry away the bag from the skin, this is to avoid having the skin tear away as mine did over Christmas when people were banging on the bathroom door. Now my family knows that when I say I have to tend to Rose, I am giving them time to tinkle so they do not rush me. Encourage her to take her time with the process and let us know how things go for her. I truly hope that she finds a connection with her tummy and all frustrtion leaves as she controls her bag issues. Good Luck Mom! I know well how frustrting this can be.

Lets hear from any seniors out there dealing with a new bag. Issues like menopause are also a topic here. Let me start the conversation….When I am hot flashing my bags need to be changed a lot more frequently as wamer can often mean swetty feeling and that seems to loosen the bag! Leaks can and are a problem. Anyone care to add to this.

Sorry Eric if this is too much but I do think we should hear from some of our seniors if they are out there and being quiet. Your input on output is important.

Keep us in the loop.

Guest
Dawn

Hi Christine, My mom as well has had an ileostomy since August 2017. She was between the hospital and rehabs from 8/17 until 2/18, when she finally came home. This has been the ostomy from hell – leaking up to 5 times a day while she was in the hospital and rehabs, with trained people changing the bag! My sister and I took over, not allowing anyone to touch the bag except us because her poor skin was blood raw from all of the acid and changes. She was on 2 ‘stool thickeners’ which added up to 360 pills a month!!! She also drinks 2 ensures a day and has a feeding peg tube.

Here are some hints that have helped us along the way:

1) We stopped all pills (immodium and a prescription for diphenoxylate) and started using liquid pectin. It is a natural fruit juice thickener that they use when making jams and jellies. You can get it in any grocery store, or even online. It can be added to any drink, oatmeal, cereal, etc. What we have found is that it only slightly thickens the output. But, the idea that she is not taking 360 pills a month is worth it!

2) Honestly, eating is the best way to thicken it. My mom does not want to eat ever, which is why she also has a feeding peg tube. All of that liquid absolutely does not help matters. But, when we can get her to eat – we notice an immediate difference. The things that work best for her are potatoes. But obviously she is not going to eat a potato at every meal. So we have a constant supply of tapioca pudding, applesauce, bananas, and oatmeal.

3) The type of bag will make a huge difference as well! We use a 2-part system. The seal has a built in bowl, but we use ring barriers as well.

4) The prep is so important .. sting free adhesive remover, sting free stomahesive powder, then all-kare skin prep (it is almost like a glue that helps the seal stay in place!)

5) Finally, what absolutely helps stop the constant leaks is an abdominal binder. It is simply a wide belt that goes around their waist, has a hole for the bag to go through, and closes using velcro. It keeps pressure in all of the right places so the seal does not have a chance to loosen up!

I know I babbled, but hopefully some of this helped.

Member

Christine…In regards to your mom. When I became so ill I could not absorb vitamins or nutrients at all, my doctors had me drinking the same drinks your mom is drinking. They said it does not happen often but in my case it did. The “drinks” were giving me vicious diarrhea.

I was always changing my bag. At least 8 times a day. My skin suffered badly. I had no appetite during that time and being hospitalized for 13 1/2 months, I was on a pic-line and those yellow fluid bags full of calories and vitamins and such. When I got out I was 92 lbs. I never missed food at all. However when I got out, I knew that I needed to be eating. Being runny all the time was exhausting. I ate potato chips which also due to the salt, helped me stay hydrated. I also found that when I started watching the food channels cooking shows, I began to crave foods and hence began to make and eat them. Good luck with your mom and tell her we all understand the different struggles with our guts.

You are on the right track.

Marcie
Member

Dawn, First off your mom is so lucky to have you and your sister!! And thank God, you both took over!!  YOU DID GOOD !!!! some think the profesionals know what they are doing but the text book is not for every  one.  It Is just ONLY a beginning.  ———————God,, I remember those raw bloody skin stoma days with them !! Just rip off the barrier an slap another one on.  I too was in a nursing home for 2 months..  And yes, I remember those many pills.  Great that you got your mom off them. Let the body make its own decisions with the  healing.  Hope you can find a support group near by- you can have an ostomate come to your home. That plus this blog of wonderful people are a major help- I did it alone for some time–but did have an ostomate come to my home and we r friends now.  But she is so busy!! She is my mentor.. But do met up for lunch a few times.. It is so helpful to be with another person of illness to make you feel like a person again.  Sending best to your mom and hope this finds her ding well.  You did GREAT !! You got her through half the battle!! Marcie…………… 

Member
Brenda

Eric I can’t thank you enough for all your videos and for the work you do! I suffered from UC for 17 years, tried every medication, infusion, injection, they have and nothing has worked for me. In August I had an emergency colectomy and permanent ileostomy. I woke up from surgery and had no idea what it was or what to do. I knew nothing and was not at all prepared. However I did know my pain was gone and replaced by hope. I got my life back! I am doing things and going places I haven’t been able to do in years. You gave me hope, I am NOT making 30 trips a day to the bathroom! I love my ileostomy ( I named her Myrtle as in Myrtle the turtle as my stoma looks like a turtle head to me.) I have to thank you so much for all your videos, product reviews and the advice to get free samples! I had an ostomy nurse in the hospital but non at home so I have learned most everything from you! You made this transition so easy. God bless you,

Member

Eric,

I deal with a lot of muscle spasms and pain due to the Fibromyalgia 18/18. If you re not sure about theFM thing, there are 18 trigger points qused when diagnosing a patient with this muscle and nerve problem. 18 is as high as the scale goes. I was one of the first diagnosed with this when it first came about . The rhuematologist , when I was told what was going on with my body and tht there was a name for it besides yuppy flu and such insulting diagnoses, handed me the kleenix bov because I could not believe there was a name for all the pain I had nd the lack of sleep and all I was going thru. She was amazing. Comforted me as needed! At any rate, I have to drink at least thee large glsses of Homogenized milk a day s the short bowel thing affects me also. We live in the Okanagan, Canadas only desert, we had a terribly hot and smokey summer, so much so tht it affected our gardens badly and the way we felt the heat. On the rare day the heat was actually felt from the Sun, we noticed a difference rather then the way it felt when we had smokey days from the massive amounts of forest fires around us. The heat on days with smoke was like being in an oven, verses the days without smoke when the heat wasmore direct from the sunshine. Does that make sence? At any rate, between working in the garden and hot days, I realized tht I was hydrating after the work, not so much as during the work. I did not want to have to clean up from garden to go in the house and use the toilet, thus resulting in less frequent visits to the can, or Ralph, the big while telephone! Now that you have a bit of history…have you ever noticed that taking Mgnesium, 250mg half a tablet with meals helps prevent blockages as to which I had three of this summer. In my healing time I pondered fequently what I had done differently to end up with blockages after 8 years without. Then I realized that not eating regularly, small meals, I always chew my food tons, and not drinking the same as in winter may have caused the blockages. I refused NGs due to a past zigzagging experience, I chose t [puke my guts out rather then have then drained…which led to more nausea but I really did not care. Anyways, the other thing I noticed was that because I wastoo hot to eat, I had lso not been taking the magnesium and when I started again, my gut returned to normal. Now I watch very carefully all over again about wht and when I eat something. Because I find useing public washrooms can be a some what horrid experience, I choose not to eat the morning I have to go into town for several errands and running around, because of the public washroom thing…what is it with people who do not respect the use of a public facility anyways…wake up and leave the place as clean as you find it or go home!!! My hugest question is about the magnesium… I have a very short gut and will often find some meds in my bag, and also is it bad to do the Magnesium before meals. When I do use the magnesium, it has kept my stool looser and I do not get mudpies around my stoma thus preventing material getting under the plate and burning the skin and also prevents blockages. Have you any info. on this matter?
I love what you re doing here so much, you have made it so we can talk and ask about something so personal without embarasment and also it helps others who may not be able to ask these questions or are in search of any info. to elp them. Thank you so very much and then some. You are the first sight I searched for when I was desperate to have answers and I read as much as I can on what you write. Your amazing!

Sincerely,

Linda

Member

I think you may have the wrong person or I dded something in the wrong place…sorry, I avoid oatmeal unless I am growly hungry and need a snack at night to feel full so I can sleep. In the cae of which, I then will eat and cook only about a 1/4 cup of oats nd drink a big gladss of milk to go with it.

Member
Linda

Excellent video and information!! Many thanks! However, I got so jealous hearing about you eating oatmeal!! I love it but not long after eating it, the gas and high output begins so I stopped eating it for a while and tried again and the same issue. I did use a little bit of milk with it – about 1/4 cup. Tried without mik, same result :( And gas is frequently an issue, no matter what I eat! I’m getting up at least 2-3 times during the night and feel homebound during the day. And I’ve had my colostomy for 7 years!

Member
Ed Brickfield

I was operated on just two weeks ago and I have to empty my bag every hour except at night and then when I wake it is nearly bursting full. I have an ileostomy with crohns. I am taking two imodium in the morning and two at night and one before each large meal. Can you tell me what I may be doing wrong? I feel like a prisoner in my home as I have to drain bag every hour. My output is well over 1,000 per day.

Guest
Paulette Stamp

I was diverted from my j-pouch to a permanent ileostomy 4 months ago. I won’t be going back to my j-pouch in the future. I wasn’t mentally prepared for that big surgery. Now I wish I’d had it removed. I have been wrestling with my output from day one. In the beginning it was nice and thick but I think that was due to the 3 hours my surgeon spent lysing my adhesions during the surgery. I think they were sluggish or something because as I recovered my output increased. I have had a problem staying hydrated ever since I got the j-pouch 5 years ago and it’s worse now. Plus I have an uneven, flabby, abdomen from abdominal surgeries and getting a wafer to last longer than 2 days has happened once. My stoma nurse told me to start taking Loperamide, prescription Imodium, again. I added capsules of Metamucil into the mix too. I have had several obstruction/partial obstructions and appreciate your warning about Metamucil. I have not been taking the max dose of 8 Loperamide daily but really need it. I have to empty my bag too many times daily. I have continued using electrolyte tabs, no sugar, like NUUN or similar powders as well as highly concentrated electrolyte liquids to add to water. They help with dehydration but not as well as they did before my stoma. Do you or anyone else here know if they are affecting my output? This topic was what I really needed to read tonight. Thank you for all you share with us.

Guest
Joyce

Hi, thanks for you r videos, they are very helpful. I have high output ileostomy. My stoma is quite low to the skin. My nurse recommended a moldable convex insert. I am trying it, but what happens is after a day and a half, since it designed to “swell” up around the stoma to prevent leaks, it seams to swell up so good as to make the opening in the insert and wafer smaller. Then, the output must go somewhere, so it starts seeping through the wafer.Any suggestions? Perhaps mold the opening larger when I apply it? But then it may not cover close enough to the stoma to protect the skin. Any answers to my issue?

Guest
don

I have a very high output yet I also suffer with my kidneys so I have to drink lots but this is affecting my liquid stoma output.

Guest
Cathi

This is wonderful information. Thank You

Guest

Thanks for this! Really useful information.