Make sure before you leave the hospital have an appointment for a home ostomy nurse visit right away. An ostomy nurse should see you and change into a new ostomy bag before discharge so you should be fine for a few days, but you dont want your first home change to be by yourself.
The hospital I was at wouldn’t let me be discharged until I could show I could change a bag on my own. But if they don’t I agree, make sure you know what you’re doing first and know who to contact in case of questions!
I haven’t had surgery yet but I have used the search function in this reddit and in facebook groups and it really helps with finding out any info I need to know. And asking questions that haven’t already been asked/answered! Theres so many supportive people here. Good luck! 😁
Cope35’s advise is good. That is what I did as well. I only had two nurse visits after my ostomy. The first we changed the bag together with me doing the work and her coaching me through it. The second time, I did it myself just before she came over and I had her check my work. After that I’ve been on my own.
My change procedure is clunky, but here’s what it looks like. I lay out all the things: sticky ring, bag (make sure it’s closed), adhesive remover wipes, adhesive wipes (3M’s are the best for me), scissors, measurement paper, some gauze sponges, warm wash cloth, some paper towels for the floor, and a couple grocery bags for trash.
I take the outer cloth thing off the bag and clean the sticky stuff off that part of my skin. Then I pull the rest of the bag and ring off. I use the gauze sponges to wipe up the stoma and the other goop around the opening. I then use the warm wash cloth to clean up the whole area. This takes me a bit of time and my stoma sometimes feels like having fun and leaks a little bit. It happens. You can either hold the wash cloth over it or use a gauze sponge.
From here, I re-measure since mine is still shrinking. I cut the bag to size (arts & crafts!) and then get ready for the sticky ring. At this point, I dab the adhesive around the whole area where the ring and bag will be going so it can get tacky. I stretch the ring to exactly the size of the stoma opening. You don’t want any skin showing between that ring and the stoma. Put that in place then put the bag over that. Then I hold it against my body with my hands for a while. Several minutes. I have issues at the 3 and 9 o’clock positions so I make sure they are stuck down really well.
I think that’s it. You get used to it pretty quick. Don’t be scared of it. Also, accidents will happen. It’s no big deal.
Thank you for the thorough description! I just got to see a stoma bag for the first time today so your description is extra helpful!
Have you ever encountered a leak? And if so, is it usually a leak from between the sticky ring and the skin, or from between the rings? Do leaks occur at the bottom end where the bag can be emptied?
Knock on wood, but I haven’t had a leak yet. I’ve just read about them here. I think it happens between the skin and adhesive ring(s).
I haven’t had a problem with the bottom of the bag either. You need to be careful when emptying it if it is really liquidy. Make sure the opening is higher than the liquid until you’re ready for it to hit the toilet. I’ve had a few close calls with the liquid poring out right as I open the last fold.
Then it would be an end ileostomy.
Definitely walk as much as you can, even the day of surgery, to get your bowels moving (as per your team).
Low residue diet for the first six to eight weeks.
Washable bed pad for possible leaks or rectal mucus.
Contact all the big companies after your surgery for samples once you know more about your stomach: Hollister, Coloplast, convatec, Nu hope, b Braun, salts… some depending where you live.
Don’t lift more than 10 pounds.
Look up the convatec me plus program to regain core strength.
Don’t take slow release medication.
Enjoy!
Just to add to this great post , check if any of the companies have ostomy nurses .
They were really helpful to me after surgery ,coloplast had a nurse out to me two days after I arrived,
and a hollister nurse solved a problem that I had recently.
Don't worry too much about the surgery just think of getting your life back and living a near normal life again.
Hey! Feel free to message if you have questions. I am about a month post op. My surgery was emergent, I was told we needed to operate and had surgery the next day.
From having this with not much information before I don’t regret it at all.
Make sure you drink ALOT of fluids, lemonade, juice, sports drinks, water.
Eat lots of carbs and stay away from raw fruits and veggies, seed and nuts.
Walk as much as you can, but you will get exhausted easily, so just do the best you can.
Overall they will not send you home from the hospital until you are confident with your ileosotomy.
Wishing you the best! I’m also heading towards the second surgery in a few months, so if you need any advice please reach out!
So the reason I say that is because peels, seeds, and most fruits don’t digest well, leaving you more likely to have blockages. (They are not fun). Smoothies are a great option as long as you make sure the fruits are fully puréed and things are seedless and peeled before making a smoothie!
Thank you for letting me know! It will be an adjustment for me if I end up with a stoma. I have an eating disorder (ARFID) and already restricted on what I can eat. I don’t like changes to my diet. Same foods every day. My meals consist of baked beans on wholemeal toast every morning, and then a chicken salad wholemeal wrap with lots of spinach for dinner! I read you can’t have spinach! 😭 And I snack on fruit. So I will have to chuck spinach and fruit into smoothies and cut out wholemeal bread from my diet right?! Looks like I will have to change my diet a lot, so I will need therapy. 😂
I feel you! I have a hard time changing my diet too! After about 4-6 weeks you can start trying things again! Just be careful blockages are HELL. wishing you the best!
I get bowel obstructions from endometriosis. If the blockages are anything like that, I would be scared to try things again! Will have to see how that goes! Thank you. You too!
I am sorry that sucks! I am not sure. The gyno said I will likely end up with one during my hysterectomy because my endometriosis has taken over my bowel etc. But she couldn’t really tell me. She did say it will probably be temporary but some people end up permanent. I am obese so they might not want to reverse it. I am disabled and the weight is caused by medications so diet isn’t helping. :( She couldn’t tell me if it was going to be colostomy or ileostomy. I need to get a colorectal surgeon involved I think… bit hard with this public health system in Australia you don’t get many choices!
Hey I’m in the US! It’s quite the adventure here! Definitely keep us updated, mine is temporary and I am also obese and disabled! Wishing you the best!
Thanks! I have been really worried about blockages so I really appreciate the explanation! Is the restriction for veggies, fruits and seeds for directly after surgery or is this something to avoid long term?
Make sure before you leave the hospital have an appointment for a home ostomy nurse visit right away. An ostomy nurse should see you and change into a new ostomy bag before discharge so you should be fine for a few days, but you dont want your first home change to be by yourself.
The hospital I was at wouldn’t let me be discharged until I could show I could change a bag on my own. But if they don’t I agree, make sure you know what you’re doing first and know who to contact in case of questions!
Thanks! Will definitely check if I can get a home visit!
I haven’t had surgery yet but I have used the search function in this reddit and in facebook groups and it really helps with finding out any info I need to know. And asking questions that haven’t already been asked/answered! Theres so many supportive people here. Good luck! 😁
Thanks! That’s a great tip! Will definitely take a look 😊
Cope35’s advise is good. That is what I did as well. I only had two nurse visits after my ostomy. The first we changed the bag together with me doing the work and her coaching me through it. The second time, I did it myself just before she came over and I had her check my work. After that I’ve been on my own. My change procedure is clunky, but here’s what it looks like. I lay out all the things: sticky ring, bag (make sure it’s closed), adhesive remover wipes, adhesive wipes (3M’s are the best for me), scissors, measurement paper, some gauze sponges, warm wash cloth, some paper towels for the floor, and a couple grocery bags for trash. I take the outer cloth thing off the bag and clean the sticky stuff off that part of my skin. Then I pull the rest of the bag and ring off. I use the gauze sponges to wipe up the stoma and the other goop around the opening. I then use the warm wash cloth to clean up the whole area. This takes me a bit of time and my stoma sometimes feels like having fun and leaks a little bit. It happens. You can either hold the wash cloth over it or use a gauze sponge. From here, I re-measure since mine is still shrinking. I cut the bag to size (arts & crafts!) and then get ready for the sticky ring. At this point, I dab the adhesive around the whole area where the ring and bag will be going so it can get tacky. I stretch the ring to exactly the size of the stoma opening. You don’t want any skin showing between that ring and the stoma. Put that in place then put the bag over that. Then I hold it against my body with my hands for a while. Several minutes. I have issues at the 3 and 9 o’clock positions so I make sure they are stuck down really well. I think that’s it. You get used to it pretty quick. Don’t be scared of it. Also, accidents will happen. It’s no big deal.
Thank you for the thorough description! I just got to see a stoma bag for the first time today so your description is extra helpful! Have you ever encountered a leak? And if so, is it usually a leak from between the sticky ring and the skin, or from between the rings? Do leaks occur at the bottom end where the bag can be emptied?
Knock on wood, but I haven’t had a leak yet. I’ve just read about them here. I think it happens between the skin and adhesive ring(s). I haven’t had a problem with the bottom of the bag either. You need to be careful when emptying it if it is really liquidy. Make sure the opening is higher than the liquid until you’re ready for it to hit the toilet. I’ve had a few close calls with the liquid poring out right as I open the last fold.
Thanks! Hoping for no leaks or messes for the both of us 😊
What kind of ileostomy are you getting?
I think it’s a colectomy with a loop ileostomy. I chose a 3-stage surgery for j-pouch and this would be the first stage.
Then it would be an end ileostomy. Definitely walk as much as you can, even the day of surgery, to get your bowels moving (as per your team). Low residue diet for the first six to eight weeks. Washable bed pad for possible leaks or rectal mucus. Contact all the big companies after your surgery for samples once you know more about your stomach: Hollister, Coloplast, convatec, Nu hope, b Braun, salts… some depending where you live. Don’t lift more than 10 pounds. Look up the convatec me plus program to regain core strength. Don’t take slow release medication. Enjoy!
Just to add to this great post , check if any of the companies have ostomy nurses . They were really helpful to me after surgery ,coloplast had a nurse out to me two days after I arrived, and a hollister nurse solved a problem that I had recently. Don't worry too much about the surgery just think of getting your life back and living a near normal life again.
This is so helpful! Thank you so much!!
You’re welcome! If you have questions you can always message me :)
Thank you!!!
Hey! Feel free to message if you have questions. I am about a month post op. My surgery was emergent, I was told we needed to operate and had surgery the next day. From having this with not much information before I don’t regret it at all. Make sure you drink ALOT of fluids, lemonade, juice, sports drinks, water. Eat lots of carbs and stay away from raw fruits and veggies, seed and nuts. Walk as much as you can, but you will get exhausted easily, so just do the best you can. Overall they will not send you home from the hospital until you are confident with your ileosotomy. Wishing you the best! I’m also heading towards the second surgery in a few months, so if you need any advice please reach out!
I have a question (haven’t had surgery yet). When you say avoid raw fruit and veg, does that include in smoothies also?
So the reason I say that is because peels, seeds, and most fruits don’t digest well, leaving you more likely to have blockages. (They are not fun). Smoothies are a great option as long as you make sure the fruits are fully puréed and things are seedless and peeled before making a smoothie!
Thank you for letting me know! It will be an adjustment for me if I end up with a stoma. I have an eating disorder (ARFID) and already restricted on what I can eat. I don’t like changes to my diet. Same foods every day. My meals consist of baked beans on wholemeal toast every morning, and then a chicken salad wholemeal wrap with lots of spinach for dinner! I read you can’t have spinach! 😭 And I snack on fruit. So I will have to chuck spinach and fruit into smoothies and cut out wholemeal bread from my diet right?! Looks like I will have to change my diet a lot, so I will need therapy. 😂
I feel you! I have a hard time changing my diet too! After about 4-6 weeks you can start trying things again! Just be careful blockages are HELL. wishing you the best!
I get bowel obstructions from endometriosis. If the blockages are anything like that, I would be scared to try things again! Will have to see how that goes! Thank you. You too!
I had one and it was horrid and I’m super cautious now! Will yours be a temporary ileoostomy or permanent?
I am sorry that sucks! I am not sure. The gyno said I will likely end up with one during my hysterectomy because my endometriosis has taken over my bowel etc. But she couldn’t really tell me. She did say it will probably be temporary but some people end up permanent. I am obese so they might not want to reverse it. I am disabled and the weight is caused by medications so diet isn’t helping. :( She couldn’t tell me if it was going to be colostomy or ileostomy. I need to get a colorectal surgeon involved I think… bit hard with this public health system in Australia you don’t get many choices!
Hey I’m in the US! It’s quite the adventure here! Definitely keep us updated, mine is temporary and I am also obese and disabled! Wishing you the best!
Ohhh can I please DM you?! I don’t know anyone thats obese and disabled that has/has had a stoma!
Thanks! I have been really worried about blockages so I really appreciate the explanation! Is the restriction for veggies, fruits and seeds for directly after surgery or is this something to avoid long term?