Old topic sorry. Advice for living w/ ileostomy?

[JP66]

Coming up on surgery on May 30th, 2024 and will end up with a temporary ileostomy for 4 months. Any advice from those that have already done this?

[thephotoguy]

Hello,

My mom had an ileostomy placed almost 1.5 years ago due to rectal cancer. She hated it at first but has really gotten used to it.

Some tips:
-Ask questions to the Wound Care/Ostomy Nurses. They are the best and really know a lot and can answer a lot of your questions. Much more helpful than the surgeon as he directed questions to them.
-Coloplast/Hollister are the main ostomy "bag" companies. You can get free samples of different bags/rings/powders from the companies. Definitely do that as some bags are more comfortable.
-Hydration is extremely important as you can get dehydrated very easily especially if you are getting any chemo/medical treatments with one.
-There are many types of food that you can't eat (fresh veggies, popcorn, nuts, foods with skins/shells, etc.) as they can cause blockages. Thankfully she has followed all food "suggestions" and haven't had any blockages as they are supposed to be very painful and often require a hospital visit.
-Her output thin/thick is very dependent on what she eats. There is a lot of info online on foods to thicken/loosen the output and that helps a lot.
-Hospital stays after rectal surgery/illoestomy can be up to a week or more. She healed pretty quickly and was out in 2 days.

If you have any other questions, please ask. I have done a ton of research during this timeframe to help her out.

[CRguy]

Coming up on surgery on May 30th, 2024 and will end up with a temporary ileostomy for 4 months. Any advice from those that have already done this?

WOW
did you ever come to the right place !!!!

There are SO many topics and posts here about this very issue, I really encourage you to search our forum to get some links to get you started !!

NOT to promote my own post list here ...
BUTT ... check out the links in my signature for a start
THEN maybe ... keywords=temporary+ileostomy
for a very comprehensive discussion for MANY years !

Yes my friend, many of us have ALL been there = BTDT

Cheers and Harmony to you on the Journey
CRguy

[Rock_Robster]

Not trying to palm off but this is a great resource for all Ostomy types similar to this one (but of course not as good ) - saved my bacon several times:

https://www.uoaa.org/forum/index.php

I had an ileostomy for 6 months and will chime in where I can, but in my experience the issues can be very individual so it’s always best to search for or ask your specific questions too rather just just relying on general advice. Then others can learn too! I’d say I learned 60% from my stoma nurse (godsend), the rest from this group and the UOAA.

[CRguy]

Thanks for tagging that in Rob !
A LOT of folks find the UOAA to be a great resource, I know a lot of permanent ostomates especially.

Cheers
CRguy

[JP66]

Hello,

My mom had an ileostomy placed almost 1.5 years ago due to rectal cancer. She hated it at first but has really gotten used to it.

Some tips:
-Ask questions to the Wound Care/Ostomy Nurses. They are the best and really know a lot and can answer a lot of your questions. Much more helpful than the surgeon as he directed questions to them.
-Coloplast/Hollister are the main ostomy "bag" companies. You can get free samples of different bags/rings/powders from the companies. Definitely do that as some bags are more comfortable.
-Hydration is extremely important as you can get dehydrated very easily especially if you are getting any chemo/medical treatments with one.
-There are many types of food that you can't eat (fresh veggies, popcorn, nuts, foods with skins/shells, etc.) as they can cause blockages. Thankfully she has followed all food "suggestions" and haven't had any blockages as they are supposed to be very painful and often require a hospital visit.
-Her output thin/thick is very dependent on what she eats. There is a lot of info online on foods to thicken/loosen the output and that helps a lot.
-Hospital stays after rectal surgery/illoestomy can be up to a week or more. She healed pretty quickly and was out in 2 days.

If you have any other questions, please ask. I have done a ton of research during this timeframe to help her out.

Thanks for the reply. Question: Has your mom not tried any fresh veggies? I became a vegan and reduced my gluten to almost zero, and I'd like to keep that up, but no fresh veggies would be an issue. Obviously I'll talk to my ostomy nurse about the issue, but just wondering what your mom's experience has been so far.

Not trying to palm off but this is a great resource for all Ostomy types similar to this one (but of course not as good ) - saved my bacon several times:

https://www.uoaa.org/forum/index.php

I had an ileostomy for 6 months and will chime in where I can, but in my experience the issues can be very individual so it’s always best to search for or ask your specific questions too rather just just relying on general advice. Then others can learn too! I’d say I learned 60% from my stoma nurse (godsend), the rest from this group and the UOAA.

An entire forum dedicated to ostomies! Thanks for the link!!

[JP66]

Wow. Just reading through some threads here and on the other forum, and it appears people's experiences are all over the place so more likely this will be a case of wait and see what issues I run into. My concerns at the moment 1) maintaining my veganism 2) taking a shower and 3) life after reversal as in will I be incontinent for life. I guess the journey continues, and I'll keep tackling the challenges one at a time. Thank goodness for all the incredible love and support including the folks here!!

Thanks everyone.

Joe

[Rock_Robster]

Good to know what your focus areas are Joe!

1. My view is if something it’s important to you, it can be made to happen. Veganism could be tricky but surely not impossible. The problem is that high insoluble fibre foods are notorious for causing ileostomy complications, however high soluble fibre is good. So you want to avoid skins, peels, stems and things like that, and get more of the vegetable “meats’ etc. Potatoes and rice are excellent. Nuts can also present a challenge especially early on, so are often limited (or taken as nut butters/pastes, etc.). But things like soy products, seitan, beans, legumes etc are usually well handled (although you may experience more gas with only your small bowel active). The main thing is staying really well hydrated and preventing painful/dangerous obstructions - the rest can be a process of trial and error.

2. Showering is a non-event. The whole bag system is 100% waterproof so you can just go for it. You can also get shower bag covers if you can’t be bothered drying it afterwards. Personally I didn’t like the feel of the bag after it had got wet, so I would use a shower as an opportunity to change the bag every 2nd day (1-piece system), and start with a clean me a fresh bag.

3. This is a challenge I’ll be honest, but a totally different one to the ileostomy. It’s highly unlikely you’ll be incontinent for life, but there is an adjustment period. My suggestion however is to fight one battle at a time - you’ll have plenty of time to deal with this one, and there are also great resources around (a good early test of your surgeon though is to ask them what they know about LARS - Low Anterior Resection Syndrome), which is very common but often under-recognised by surgeons.

One small plug: while not cheap - this is the most incredible ostomy product I ever found, and I literally wore it 24/7 for the duration of my ileostomy (including sleeping) except showering. Each one is custom made and takes a bit of time, but they will need your stoma measurements so it’s a bit hard to pre-order unfortunately:

https://www.stealthbelt.com/vertical-belt

[JP66]

Good to know what your focus areas are Joe!

1. My view is if something it’s important to you, it can be made to happen. Veganism could be tricky but surely not impossible. The problem is that high insoluble fibre foods are notorious for causing ileostomy complications, however high soluble fibre is good. So you want to avoid skins, peels, stems and things like that, and get more of the vegetable “meats’ etc. Potatoes and rice are excellent. Nuts can also present a challenge especially early on, so are often limited (or taken as nut butters/pastes, etc.). But things like soy products, seitan, beans, legumes etc are usually well handled (although you may experience more gas with only your small bowel active). The main thing is staying really well hydrated and preventing painful/dangerous obstructions - the rest can be a process of trial and error.

2. Showering is a non-event. The whole bag system is 100% waterproof so you can just go for it. You can also get shower bag covers if you can’t be bothered drying it afterwards. Personally I didn’t like the feel of the bag after it had got wet, so I would use a shower as an opportunity to change the bag every 2nd day (1-piece system), and start with a clean me a fresh bag.

3. This is a challenge I’ll be honest, but a totally different one to the ileostomy. It’s highly unlikely you’ll be incontinent for life, but there is an adjustment period. My suggestion however is to fight one battle at a time - you’ll have plenty of time to deal with this one, and there are also great resources around (a good early test of your surgeon though is to ask them what they know about LARS - Low Anterior Resection Syndrome), which is very common but often under-recognised by surgeons.

One small plug: while not cheap - this is the most incredible ostomy product I ever found, and I literally wore it 24/7 for the duration of my ileostomy (including sleeping) except showering. Each one is custom made and takes a bit of time, but they will need your stoma measurements so it’s a bit hard to pre-order unfortunately:

https://www.stealthbelt.com/vertical-belt

Excellent points as always. Thanks.

I have been scouring this website and the ostomy dedicated forum as well and am a bit surprised no one is talking about juicing and/or blending. Seems like a great way for vegans to get nutrition whilst reducing the chances of a blockage, but maybe it doesn't work that way. Anyways, I'll keep searching

Joe

[Rock_Robster]

Good to know what your focus areas are Joe!

1. My view is if something it’s important to you, it can be made to happen. Veganism could be tricky but surely not impossible. The problem is that high insoluble fibre foods are notorious for causing ileostomy complications, however high soluble fibre is good. So you want to avoid skins, peels, stems and things like that, and get more of the vegetable “meats’ etc. Potatoes and rice are excellent. Nuts can also present a challenge especially early on, so are often limited (or taken as nut butters/pastes, etc.). But things like soy products, seitan, beans, legumes etc are usually well handled (although you may experience more gas with only your small bowel active). The main thing is staying really well hydrated and preventing painful/dangerous obstructions - the rest can be a process of trial and error.

2. Showering is a non-event. The whole bag system is 100% waterproof so you can just go for it. You can also get shower bag covers if you can’t be bothered drying it afterwards. Personally I didn’t like the feel of the bag after it had got wet, so I would use a shower as an opportunity to change the bag every 2nd day (1-piece system), and start with a clean me a fresh bag.

3. This is a challenge I’ll be honest, but a totally different one to the ileostomy. It’s highly unlikely you’ll be incontinent for life, but there is an adjustment period. My suggestion however is to fight one battle at a time - you’ll have plenty of time to deal with this one, and there are also great resources around (a good early test of your surgeon though is to ask them what they know about LARS - Low Anterior Resection Syndrome), which is very common but often under-recognised by surgeons.

One small plug: while not cheap - this is the most incredible ostomy product I ever found, and I literally wore it 24/7 for the duration of my ileostomy (including sleeping) except showering. Each one is custom made and takes a bit of time, but they will need your stoma measurements so it’s a bit hard to pre-order unfortunately:

https://www.stealthbelt.com/vertical-belt

Excellent points as always. Thanks.

I have been scouring this website and the ostomy dedicated forum as well and am a bit surprised no one is talking about juicing and/or blending. Seems like a great way for vegans to get nutrition whilst reducing the chances of a blockage, but maybe it doesn't work that way. Anyways, I'll keep searching

Joe

Blending definitely! I had an all-steel NutriBullet-style blender and made a lot of smoothies with soy milk, banana, nut butters, dates, chia seed (carefully…), coconut yoghurt, fresh and frozen berries, all sorts of good things.

Juicing I largely avoided because I found the big dump of sugar just made my bowels run without making me feel great. Maybe juicing greens might have worked better though; I didn’t have a cold press juicer.

[thephotoguy]

Hello,

My mom had an ileostomy placed almost 1.5 years ago due to rectal cancer. She hated it at first but has really gotten used to it.

Some tips:
-Ask questions to the Wound Care/Ostomy Nurses. They are the best and really know a lot and can answer a lot of your questions. Much more helpful than the surgeon as he directed questions to them.
-Coloplast/Hollister are the main ostomy "bag" companies. You can get free samples of different bags/rings/powders from the companies. Definitely do that as some bags are more comfortable.
-Hydration is extremely important as you can get dehydrated very easily especially if you are getting any chemo/medical treatments with one.
-There are many types of food that you can't eat (fresh veggies, popcorn, nuts, foods with skins/shells, etc.) as they can cause blockages. Thankfully she has followed all food "suggestions" and haven't had any blockages as they are supposed to be very painful and often require a hospital visit.
-Her output thin/thick is very dependent on what she eats. There is a lot of info online on foods to thicken/loosen the output and that helps a lot.
-Hospital stays after rectal surgery/illoestomy can be up to a week or more. She healed pretty quickly and was out in 2 days.

If you have any other questions, please ask. I have done a ton of research during this timeframe to help her out.

Thanks for the reply. Question: Has your mom not tried any fresh veggies? I became a vegan and reduced my gluten to almost zero, and I'd like to keep that up, but no fresh veggies would be an issue. Obviously I'll talk to my ostomy nurse about the issue, but just wondering what your mom's experience has been so far.

Not trying to palm off but this is a great resource for all Ostomy types similar to this one (but of course not as good ) - saved my bacon several times:

https://www.uoaa.org/forum/index.php

I had an ileostomy for 6 months and will chime in where I can, but in my experience the issues can be very individual so it’s always best to search for or ask your specific questions too rather just just relying on general advice. Then others can learn too! I’d say I learned 60% from my stoma nurse (godsend), the rest from this group and the UOAA.

An entire forum dedicated to ostomies! Thanks for the link!!

After she read a lot of the "horror" stories of complications/blockages, she has stayed away from fresh veggies.

She will eat fresh cooked potatoes and carrots (baked or steamed). She does eat canned carrots, once in a while she will eat green beans (beef stew that has really softened the green beans), and canned peaches. Her ostomy nurse said some lettuce would be okay and she has tried it a few times on sandwiches and had no issues.

Broccoli and and Pineapples are some fresh veggies that are prone to blockages.

[JP66]

R_R,
Sorry to lean on you so much here, but searching just doesn't seem to get many answers, and I have 2 new questions.

1) Did you find wearing your bag horizontally or vertically was easier with your StealthBelt?
2) Did you have a Loop Ileostomy with an irregular stoma or an End Ileo w/ a nice round stoma, and if yours was irregular what tricks if any did you use to get a good fit?

Thanks as always!

Joe

[Rock_Robster]

R_R,
Sorry to lean on you so much here, but searching just doesn't seem to get many answers, and I have 2 new questions.

1) Did you find wearing your bag horizontally or vertically was easier with your StealthBelt?
2) Did you have a Loop Ileostomy with an irregular stoma or an End Ileo w/ a nice round stoma, and if yours was irregular what tricks if any did you use to get a good fit?

Thanks as always!

Joe

No worries at all! Ask away - that’s why we’re all here.

1. Definitely vertically. I would have preferred horizontally but my stoma nurse told me that’s only for colostomies, and horizontal would exacerbate leakage issues in an ileostomy as the fluid wouldn’t drain to the bottom of the bag properly. It would also make it very hard to drain without making a mess, as the Stealth Belt has a zip at the bottom so you can drain the bag without removing the whole belt.

2. I had a loop ileo as it was temporary, and the end was reasonably round and symmetrical, slightly oval. The main thing I used was the flexible ring seal which you can cut to size (or get pre-cut) to form a tight seal around the base of the stoma (a bit like a gasket). It’s harder obviously if it’s not round (as the hard bag ring part is), so this provides a bit of size buffer against irregularities. I also found switching to a convex baseplate (this will make sense) after my stoma size stabilised prevented leaks better as I had a relatively flat peri-stoma area and this kept a tighter seal against the skin. Finally, one pre-cut strip of curved Brava tape at the bottom of the baseplate (over the top) provided a little extra security, as that was the only place I ever had a leak once.

If you protect and care for the peristomal skin like an absolute hawk, you can hopefully avoid needing to do anything more complex with powders, crusting, etc. which makes things trickier. I was fortunately able to, but everyone’s case is unique.

I only used Coloplast products which I found excellent, and also their customer support. I used the Coloplast Sensura Mio one-piece drainable bags, the Coloplast adhesive removal spray (absolutely essential), the powder (very sparingly), the ring seals, and the curved Brava tape. Once things stabilise you can order most things pre-cut to size, which saves heaps of time on a bag change. I had a small cross-body bag I would just carry a day’s supplies in whenever I went out.

I would change my bag every 2nd day after a shower, and I got it down to under 10 mins start to finish. It’s harder to do when your stoma is active, so I would try to do it before breakfast. Some people eat a marshmallow beforehand to temporarily slow the flow if they have to do it while it’s active.

On the days I wasn’t changing it I bought a waterproof shower cover bag so I didn’t have to blow-dry the bag afterward. You can order this early as they’re one-size-fits-all.

The other thing I’d say is always order the max volume you’re allowed for your first few orders, so you can build up a bit of inventory in case there’s supply disruptions (which do happen from time to time) or you want to go travelling and bring a larger amount with you.

When the stoma nurse marks you up for the stoma location, think about what type of clothes you prefer to wear as there are tradeoffs with higher vs lower. You can’t tuck the bag into your pants, so I think generally for men slightly higher is better to manage the length of the bag - unless you only ever wear untucked shirts and/or longer t-shirts. Women are often ok with lower as they can wear dresses etc that cover the full length, and they would rather not have a lumpy stomach/waist area.

Ask the surgeon to please not put a trocar hole too close to the stoma, as this makes it a massive PITA to heal with the stoma adhesive being pulled off every time.

[JP66]

Just a quick update with minor items I learned in my first 2 weeks for any future patients that stumble upon this thread.

1) No one mentioned but simply rinsing the bag with water when emptying reduces odor and makes it last longer.
2) Veggies blended in soups are no problem what so ever. Broccoli and kale in a potato-tofu soup are great.
3) I had surgery at age 3 days old to create an esophagus because I didn't have one and it left scar tissue in my stomach so this may be contributing to my problem but I lost 10lbs post surgery and still didn't feel hungry so I need to focus on eating every couple hours. Lack of appetite post abdominal surgery is apparently common so I suspect this will be important for many. Basically plan on forcing yourself to eat more than you feel if you're like me and lost a lot of weight post surgery.
4) YouTube is a great resource for teaching tips and tricks. My stoma nurse from the hospital didn't teach me nearly as much about different products and there potential uses as YouTubers. So far I have found Coloplast's Mio Flex to be great. Basically I do the exact routine shown below except I use Brava paste and powder because it doesn't have alcohol and doesn't sting.
5) I get up to use the restroom twice a night at a minimum and empty my bag when I do, but clearly getting up at night to check is critical until your stoma output settles into a routine you can trust. My bag gets full at least once at night no matter how early I eat dinner.

https://youtu.be/LI7q7rGjtww?si=WhZfVE2yjZVq2EIb

[JP66]

Prior to surgery my exercise routine was improving almost daily, but post LAR surgery and Lymphadenectomy I've been setback a lot to where I struggle just to walk for an hour because I feel tired and weak. I hoped by now to at least feel not tired and weak anymore. It is 17 days post surgery.

Questions: Did others recover faster or do I need to be patient and adjust my expectations? How soon after LAR surgery did others get back to a sorta normal exercise routine?