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Help please! Workouts & diarrhea and leaking problems

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Thu Oct 01, 2020 3:52 pm

Hello,

 

im very new on here.  I am hoping someone can help me.  I'm feeling rather desperate.

 

I have a permanent ileostomy.  I had the surgery in 2018.  This was due to a 7 year battle with ulcerative colitis.

 

Anyway, I started working out (aerobic exercise) twice a day for 45 min.  This has started me getting diarrhea which leads me to dehydration.  It also leads to leaking.  I've been having to change my pouch every day to every 2 days and all around my stoma it's bleeding.  My skin is sore.  However, I really don't want to stop working out.  I really want to get back being toned, strong and healthy.

 

My doctor, whom I haven't met yet (just talked on the phone due to Covid) had one suggestion only and that was to put 2 tbsp of oat bran in a probiotic yogurt for breakfast.

 

the only way I can stop or slow things down is to take a minimum of 4-8 imodium a day.  That gets costly as well as changing pouches this often as well.

 

Has anyone else ran into this problem?  If so, what did you do to stop it....any help would be so appreciated.  Thanks so much.

Thu Oct 01, 2020 4:05 pm

Hi Kela,

Boy, you have been through a lot! Sounds like you've had a lot of frustration to deal with. I don't have the same issues you are describing, but someone else on this site will respond with their experiences, I'm sure. In the meantime, have a look at the Collections in the upper right corner of this page. Both Ostomy Tips and Premium Content May give you some ideas while you're waiting. Hope things get resolved soon.

 

Laurie

Thu Oct 01, 2020 4:12 pm

  Hey Kela and welcome, 

This is a supportive site I'm sure you'll get plenty of help. 

 When cutting out your hole diameter, I myself recommend leave it just slightly larger so when you are bending twisting whatever movement it will not make contact with your stoma. That may help with bleeding. 

 When you change the adhesive part of the bag whatever you use to wipe it all clean-lastly use paper towel damp with water so there is no other chemical residue on your skin. Prep can make a difference. 

 Hopefully someone else will provide the cure.

   ...mtnman. 

 

Thu Oct 01, 2020 4:58 pm

Hi Kela,  I see you are from Lake Cowichan.  Where is your Doctor? I would ask your Doctor to hook you up with an ostomy nurse.  It might be that the nearest hospital with a dedicated ostomy nurse is Victoria, but maybe Nanaimo?  Alternatively where do you buy your ostomy supplies? Major suppliers have ostomy nurses on staff who are there to help with just the kind of problems you are having.  It might not be practical for you to meet in person due to your location or due to Covid (although my ostomy nurse is doing in-person appointments now) but an over the phone appointment should be doable.  The only other thing I can suggest is that when you are changing your pouch, take a shower and be really particular about soaping up and cleaning the area around your stoma, then rinse really well, then make sure the skin is absolutely bone dry, dry, dry.  Good luck and please let us know how things go. 

 

Terry

Thu Oct 01, 2020 5:14 pm

Hi Kela -  I've had my permanent ileostomy for over 20 years.  You have my respect for working hard to be healthy 😁 but my advice is to find harmony with your stoma.  Suggest that you try to avoid jumping or extreme twisting - aerobic activity that will stress your ileostomy and can impact the seal on the wafer.  Maybe do less strenuous activities but for longer or more reps to compensate (?).  Depending on your diet and time of day you work out, avoid caffeine which can make your output watery.  Try eating some oatmeal, banana or peanut butter (within reason) to slow down your gut and give you some time without your pouch filling up.   Congratulations on your healthy life focus.  

Thu Oct 01, 2020 5:42 pm
Padfoot wrote:

Hi Kela,

Boy, you have been through a lot! Sounds like you've had a lot of frustration to deal with. I don't have the same issues you are describing, but someone else on this site will respond with their experiences, I'm sure. In the meantime, have a look at the Collections in the upper right corner of this page. Both Ostomy Tips and Premium Content May give you some ideas while you're waiting. Hope things get resolved soon.

 

Laurie

 

thanks Laurie, I will

 



Thu Oct 01, 2020 5:46 pm
delgrl525 wrote:

Hi Kela,  I see you are from Lake Cowichan.  Where is your Doctor? I would ask your Doctor to hook you up with an ostomy nurse.  It might be that the nearest hospital with a dedicated ostomy nurse is Victoria, but maybe Nanaimo?  Alternatively where do you buy your ostomy supplies? Major suppliers have ostomy nurses on staff who are there to help with just the kind of problems you are having.  It might not be practical for you to meet in person due to your location or due to Covid (although my ostomy nurse is doing in-person appointments now) but an over the phone appointment should be doable.  The only other thing I can suggest is that when you are changing your pouch, take a shower and be really particular about soaping up and cleaning the area around your stoma, then rinse really well, then make sure the skin is absolutely bone dry, dry, dry.  Good luck and please let us know how things go. 

 

Terry


Thanks Terry.  I did text my ostomy nurse I had when I lived in White Rock.  She is amazing.  She has not heard of my problem.  She suggested a prescription to get from my doctor.  I have not had a leak in a year and a half...it's only been since I've been working out.  I thought due to sweatiness and positioning.  However I think it's more so due to diarrhea that I can't get under control.

Thu Oct 01, 2020 5:49 pm
LetsGoGolfing wrote:

Hi Kela -  I've had my permanent ileostomy for over 20 years.  You have my respect for working hard to be healthy 😁 but my advice is to find harmony with your stoma.  Suggest that you try to avoid jumping or extreme twisting - aerobic activity that will stress your ileostomy and can impact the seal on the wafer.  Maybe do less strenuous activities but for longer or more reps to compensate (?).  Depending on your diet and time of day you work out, avoid caffeine which can make your output watery.  Try eating some oatmeal, banana or peanut butter (within reason) to slow down your gut and give you some time without your pouch filling up.   Congratulations on your healthy life focus.  


Thank you for your advice.  I have been eating bananas, some rice, peanut butter, oatmeal and now he dr suggested adding oat bran into my probiotic yogurt which I've stared too.  That sucks if I can't do the aerobic exercise as it's easy to do at home.  I have to figure something out though.  I really appreciate you thoughts though and will look for other forms of exercise.

Thu Oct 01, 2020 5:51 pm
Mtnman wrote:

  Hey Kela and welcome, 

This is a supportive site I'm sure you'll get plenty of help. 

 When cutting out your hole diameter, I myself recommend leave it just slightly larger so when you are bending twisting whatever movement it will not make contact with your stoma. That may help with bleeding. 

 When you change the adhesive part of the bag whatever you use to wipe it all clean-lastly use paper towel damp with water so there is no other chemical residue on your skin. Prep can make a difference. 

 Hopefully someone else will provide the cure.

   ...mtnman. 

 


Hey Mtnman, thank you.  My pouches are precut.  I really haven't had any leaking issues for 1.5 yrs.  possibly is the type of exercise and the sweatiness.....more than anything I think diarrhea is a big factor and that needs to get under control.  Thank you for your thoughts thou, I really appreciate any help I can get.

Thu Oct 01, 2020 7:30 pm

Kela .. I too have a ileostomy. If I do any types of aerobics I wear a hernia belt . I had to be fitted for one by my Ostomy nurse ..then they ordered it and was approved by insurance . Are you wearing a pouch with a belt attached ? I never do anything without it . Your shaking and shifting too much and it's releasing your pouch too much . I too have extremely high output . I change my pouch faithfully every 3 days ..no matter what. My ileostomy was due to 19 yrs of a rare case of microscopic collegeous colitis. Try that ... I find it's very helpful for running 

Thu Oct 01, 2020 7:37 pm

Hi again Kela,  We might even have the same stoma nurse.  Were you attached to Nightingales Medical Supplies in White Rock or Peace Arch Hospital?  I've seen a few of the nurses at Nightingales but my favourite is Heidi.  I've been giving your predicament some more thought and I think Letsgogolfing gives good advice.  Your 45 minute workouts twice a day might just be too much to expect your ostomy to handle.  I also admire you for wanting to keep fit and I totally relate.  Before my ostomy I was a gym rat and I think honestly in retrospect I was probably addicted to exercise.  My gym exercises were 2 plus hours 3 to 4 times a week, but I alternated aerobics with strength training  and I seldom worked out two days in a row. You need to give your body a break. On my non workout days I would always still get out for fast walks.  After surgery I had hoped to get back to the gym and then covid hit.  I am not happy with my fitness level right now but I'm doing the best that I can.  I do work out at home and walk lots but I know I'm not anywhere near the level I was at, so I totally get where you are coming from.  You just need to find a balance you can be satisfied with between fitness and a happy ostomy.  I think it's called compromise!  Hang in there!

 

Terry



Last edited by delgrl525 on Sat Oct 03, 2020 12:30 pm; edited 1 time in total
Thu Oct 01, 2020 11:09 pm

This might be a little long but hopefully it will help. Let me see if I can give you two directions to help you out. I remember to get ahead of hydrating the body you need to drink fluids before your workout and allow yourself to hydrate your body when it is not under stress from exercise there is some drink additives that you can take that allows you to absorb more fluid through your small intestine then just water alone (Liquid IV, Power pak , and Trioral) this puts more things in the water to allow your gut to absorb it better but follow instructions, some are once a day or as needed. When you are working hard alot of times the idea is to drink fluids only then, to catch up when you feeling thirsty, with a illeostomy you need to plan ahead or your body will fall behind. Food tricks will help also to slow the flow of how fast things move through you and the list a ostomy nurse can advise is always helpful alot of information on this site has list of food that can help. Always be aware of food allergies, I developed alot when I started having problem and was diagnosed with UC. The second direction is your ostomy supplies, try out difference brands they are not always the same. Companies want a customer for life so they love to provide samples, take advantage if this. They make many produces to help with the seal around your stoma some react to the fluid and fill it areas that try to leak. Also the seal come in different styles some are flat some are convex that pushes more on the area around your stoma. There is also paste and seal rings. Here is what I do. I will clean the skin with adhesive remover and then a wet papertowel to remove adhesive remover residue to ensure it is clean before using skin prep that makes the area sticky then put the molded ring around  the stoma and get it up against the stoma with no gaps. Then I will put the paste on the seal on the edge of the hole that I custom cut to fit. When ready I will push the seal on and press to get a clean seal on the adhesive, then I have a pvc pipe fitting that is clean that fits over the stoma but inside the flang of the seal and gently press it down so the paste and molded ring have pressure to adhere together and to my skin. Then I will put the bag on and lock it down, I use a two peice system so that is how it is possible. Have not had any leaks and I work outside all day in all weather in Texas. 

Hope this help

Fri Oct 02, 2020 7:02 pm

thank you so much for your very helpful advice!  What I got te most out of is getting ahead of the hydrating....drink first before working out or doing yard work...whatever ....I got some hydralyte toads to my water with all the electrolytes I need.  I have tried every type of product out on the market as when I first had my surgery my surgeon tried to clear a blockage I got hours after surgery causing the the stitches to split around half of my stoma and caused a hernia.  He had to fix that 3 months later.  In that 3 months, I was constantly leaking.  I do have rings and stoma powder and 2 piece and one piece and Hollister and coloplast products.  I hadn't leaked for 1.5 years until I was able to finally start working out again.  I also changed my diet around a bit now.  Hoping all this great advice I've been receiving all starts to work.  Thank you again!  Kela


Longroad78 wrote:

This might be a little long but hopefully it will help. Let me see if I can give you two directions to help you out. I remember to get ahead of hydrating the body you need to drink fluids before your workout and allow yourself to hydrate your body when it is not under stress from exercise there is some drink additives that you can take that allows you to absorb more fluid through your small intestine then just water alone (Liquid IV, Power pak , and Trioral) this puts more things in the water to allow your gut to absorb it better but follow instructions, some are once a day or as needed. When you are working hard alot of times the idea is to drink fluids only then, to catch up when you feeling thirsty, with a illeostomy you need to plan ahead or your body will fall behind. Food tricks will help also to slow the flow of how fast things move through you and the list a ostomy nurse can advise is always helpful alot of information on this site has list of food that can help. Always be aware of food allergies, I developed alot when I started having problem and was diagnosed with UC. The second direction is your ostomy supplies, try out difference brands they are not always the same. Companies want a customer for life so they love to provide samples, take advantage if this. They make many produces to help with the seal around your stoma some react to the fluid and fill it areas that try to leak. Also the seal come in different styles some are flat some are convex that pushes more on the area around your stoma. There is also paste and seal rings. Here is what I do. I will clean the skin with adhesive remover and then a wet papertowel to remove adhesive remover residue to ensure it is clean before using skin prep that makes the area sticky then put the molded ring around  the stoma and get it up against the stoma with no gaps. Then I will put the paste on the seal on the edge of the hole that I custom cut to fit. When ready I will push the seal on and press to get a clean seal on the adhesive, then I have a pvc pipe fitting that is clean that fits over the stoma but inside the flang of the seal and gently press it down so the paste and molded ring have pressure to adhere together and to my skin. Then I will put the bag on and lock it down, I use a two peice system so that is how it is possible. Have not had any leaks and I work outside all day in all weather in Texas. 

Hope this help



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