Ah, I see. I'm sorry that you've had to go through all that, including the persistent issues that followed. I don't think there's any way around making oatmeal work for you, as I'm sure it has more to do with how your insides have been rearranged than the oatmeal itself. Are you still able to enjoy it once in a while as a treat?

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

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.

Hi Linda,

I've used magnesium before, but not to prevent blockages. I do believe it acts as a laxative,however, dosing and timing should be discussed with your pharmacist. You should also mention that you're seeing meds in your bag - they may be able to give you a version of the meds that dissolves further up in the gut.

Good luck.

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,

You're very welcome, Brenda!

I hope that you and Myrtle continue to have a positive future together :)

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.

Hi Christine,

I'm sorry that your mum is going through that. I'm sure it must be frustrating for you both.

Liquid output increases the risk of leaks and if she's on a liquid diet like Ensure, then her output will naturally be loose/liquid and I don't think immodium can help much with that.

Starches will naturally thicken output. Can she eat things like potatoes (any form) or pasta?

If the output is still liquid regardless of the diet, try using gelling sachets in her pouch - these will thicken up the output and help to make it more manageable.

If you haven't already spoken with a stoma nurse about this issues, I do suggest that you make an appointment with one.

Best of luck!

Eric

Eaken site doesn't work, wanted sample gel.

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

It's working fine for me. Try : https://www.eakin.eu/products/

If you can get them, the Coloplast protective rings are very good. Make sure it's the Protective Ring, not their moldable rings. Some countries don't carry them, unfortunately.

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.

What a thoughtful reply! Thanks for contributing, Linda!

eaken site still doesn't work. Maybe it expects you to accept their marketing stuff. Hate this and won't keep doing it over and over. Sachet thickens bag output, helps prevent leaks when changing bag although leaks are from device, not bag. Had to purchase never got sample. Put moldable close to stoma helps. Surgeon said metamucil crackers, safer than powder in water or capsules, may help?

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?

Short Bowel Syndrome will nearly always create high-output, liquid stool, unfortunately.

I would suggest contacting an organization who supports people with SBS to see if they have any strategies that might help.

I don't know what appliances or products you've tried, but many brands do offer high-output stoma bags that might help to at least manage the output. My last article talks about one from Coloplast: https://www.veganostomy.ca/sensura-mio-high-output/

Thank you. I actually have an appointment with the ostomy Clinic on Monday. They are trying to find some stuff and are going to try and help my constant burn rash. I will let you know what I find out. Again thank you for your reply.

Linda I also had the ileojejunal bypass in 1974. I was the youngest persono have it at the time. I lost over 100 lb and they were getting worried I was loosing too much wait. Everything was fine until 2004, when I had an ulcer rupture in my colon. The surgeon that was on call at the hospital did not listen to the GI doc and went ahead inside of me blind. He ripped apart my weight surgery as it had adhered to the rest of my bowel.He oporated on me 3 times in 3 weeks each one making me worse. When he was done zI was told I had no colon and less than 8 foot of small bowel. I was stuck into a long term care facility and basically forgotten. At the end of 90 days they were kicking me out cause he said he did not know what to do cause he did not know what was wrong. My Sister told them we wanted a second opinion (which should have been gotten alot sooner) She got me into the Mayo Clinic in Scottsdale, AZ. The surgeon out there did one test and tookme to surgery, where she saved my life. It took me the rest of the year to recover. I went back to work and things were doing okay up until 2015 when I had a diabetic ulcer come on my left foot. They ended up cutting off my little toe and part of the side of my foot. The doctor told me because of the diabetic neuropathy in my feet I could not drive the school bus any more and I cried. Thing were getting worse as I applied for State disability. You have to be off work 6 mths before you can apply. In the meantime of waiting all of a sudden I started passing brilliant red blood. Nobody knew why. I lost control of my sphincter so it got really bad. I was having to go get blood once or twice a week. I got a new GI doc and he called me on a weekend and told me to get to the hospital now. I went got 3 units of blood in the ER and was admitted. On Monday he did a EGD and colonoscopy. He came back and told me he knew where I was bleeding from and unfortunately it was colon cancer in the little 3 inches I did not know I had. My Sister went ahead and moved me to Oregon so I could be with my only family. I got my state insurance and I applied for Social Security disability. Turns out because of my insides being so messed up I was not a candidate for radiation therapy. She sent me straight to a surgeon who saved my life. I have lots of trouble because my insides are messed up. But I keep trying. I hope you find something that will help you.

Hello Paula...my dear... you have been though so much. I have not had to deal with cancer, but the bad gut sure has had me by the throat. I used to think that I would be tough and not let my gut run me but I would run my gut. In reality it is the other way round. My gut runs me. But I do control it periodically. On the rare occasion that I manage to run things the way I want so I can leave the house for a few hours...I rejoice! If I want to leave the house, I have to plan for two days to do so. I watch carefully what I eat. I eat only foods that I know will not run right out of me. I rest a lot till the time, and I increase my fluids. I drink a lot of milk for the fats and the vit. because I get some pretty rediculous muscle cramps...especially in my feet and lower legs. When I do go I have to take a change of clothes with me and all the "just incase" needs of my bag system. I also take water with me. I always make sure I know where all the bathrooms are. If it is a new place for me...I call ahead or make a point to ask for the washroom as soon as I get in the door. Then I go and check for cleanliness. Is there a shelf in there to put my things on or do I have to ballance them on the toilet paper holder. I also carry with me those peel off plastic hooks you can get at the hardware store. I have no prolblem applying them to a wall if I need one to hold my purse and another to hang the bag I have with my important changing and cleaning supplies and deoderant in it. I never put my things on the floor. I also go to management to tell them that there bathroom does not meet the needs of the disability range. They are usually surprised at this. I tell them that as a person with a Ileostomy, there is no place to put our supplies and we need the bigger washroom to have a place to change and to also put our supplies out. Then I try to go back a few weeks later to see if they made changes. If not...I hang my hooks without a problem. As many as I need. They are usually there when I return again...for instance at the flee market. We may not be in a wheelchair...but it is still a disability. They need to be made aware of this.

In dealing with the ever awatery output and the occastional strange blockage...I have revently tried the gel caps Eric tallks about. I love them!!! Especially at night. I believe that the watery stuff is so acidic that it really harms the skin and I do my best to keep that area dry as you do also...but when we lay down at night the watery stuff gets into the hole we have to cut for our stoma and then gets under the plate on our stomic. I used to sleep elevated. Since useing the gel caps...I do not need to. I love laying down flat. It is a great way to really rest the body. I do not know the price of the gel caps yet as they were a sample and what I did notice when I saw how it worked was that it looked like Tapioca pudding in the bg when it has bloomed. So...I plan to try tapioca in my bag next time I need it. Then I will decide what works best for me.. Eric...I am not taking your job...just very curious about it, but the best to me is still the most inexpensive and most convienient.

Other then really watching what I eat for the first two years and now I only really do it when I go out as it seems like you Paula, there is no difference. I even eat popcorn! I watch how much corn I eat tho. The gassy vegies...cauliflower and broccolli and brussel sprouts and cabbage...I know there are others but not sure of them all. I really avoid bread that seems to be so light you know it is full of yeast. I love bread but really hate the effects of yeast. If I have pizza I make my own bread and then have only thin crust. I do not know much more then what I have tried, but I hope something here helps you in some way. Sometimes just talking about what is happening and knowing someone else has trouble with it is very helpful. It took me a long time to talk about what I have gone thru as I believe that I was in a state of just surviving what I had gone thru. I had nothing left in me for energy and strength. I had not even thought about finding support on the computer until recently and even then it was an accicddent. Feel free to write anytime. In the mean time drink milk if you can it is so good for the skin and tissue, and do not dehydrate. Try and keep that site dry. Do you use Stoma powder on it and make sure it is not a fungus. Your doctor can tell you if you need help with that and there is a cream for it.

I am so glad that you have a caring sister. That goes a long way to surviving. What is the prognosis of your cancer? I have three sisters and one sister inlaw. It is my older and youngest sister that keep in touch. The others have apsolutely no clue what goes on. When I was in Vancouver for 6 1/2 months my older sis would always come up from Surrey on Thursday night and spend several hours. She also always brought something homemade to tempt my appetite. I was only eating a lot of soups for the longest time and she did well parading all kinds of cream soups thru my room to feed me. I loved those weekly visits. My youngest has six kids and they were much younger at the time so she could not come up often at all. I really understood as it was a two and a half hour trip for her and then the time spent with me on top of it. They are both sweethearts. My parents came up once a week otherwise I was on my own until my Hubby made it up there. He had a driving job and would drive down to the coast Fridays, a five hour drive, spend that night at my parents then come see me, another hour and half drive, at this point we would visit, eat lunch and then close the curtain around my bed and we would snuggle and have a long needed nap together. Then he would go back to my folks for the evening, sleep and head home on Sunday morning to be with the kids for a bit. He was amazing to do all that driving on top of his job. I miss him something fierce and just recenly after telling my son how badly I miss his daddy, my son came to see me and brought me a vial of the cologne my hubby used to ware. It was one I had bought him for Chrstmas one year. I may cry now.

You may have gathered that we talk about many things here and I know that I sure appreciate it. If you want to write seperately to talk about more personal things, Eirc can give you my address.

Well, take care and I know it is unlikely things will slow right down with your short gut but I still hope it does to some extent. Short gut? Does it works better if we eat more thru the day and smaller meals...the court is still out. But the extra vitamins from food is important I think.

Take care....