I am 9 days after surgery. Nothing could have prepared me for this. The pain, not feeling well, the constant trips to the bathroom. It's hard work. I have had leaks and don't know why. Not being able to do much for myself. They kept telling me in the hospital "you're doing great, you're doing great". When I got home, I totally did not feel like I'm doing great. My ostomy nurse ordered me supplies and now I have so much stuff I don't know what is what. I am extremely overwhelmed and feel so alone.
pammer
Feb 28, 2014 1:20 pm
StarUK
Mar 01, 2014 9:05 am
Pammer, you're not alone. I think we all felt like you do now. I felt like I spent my first month covered in poop, and I would not leave the house. But day by day, it gets easier. Just cut yourself some slack. No one is an expert ostomist straight away, and we still have disasters even after having a bag for years. Practice makes perfect. You are kind of shell-shocked right now. I promise you, in a few months, you will look back at this period and smile. - Trish
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Mysterious Mose
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Past Member
Mar 01, 2014 9:12 pm
That's right, you are not alone! I was the same for 3 or 4 months after my surgery. My bag would not stick at all. I was very weak and sick for a long time. But there is hope!
Stay focused, relaxed, and eat well.
dragon2
Mar 02, 2014 10:02 am
Hi Julie here, Griffin's mom. I have Griffin who's 10 and Sage who's 11 with ADHD!! Oh, things can get very heated up in our house!!! Pam, make sure you know from the stoma nurse what to put on before she leaves because the nurses at the hospital did not know one thing about the bags!!! I am not a nurse, but I am when I am with Griffin!
1. Make sure the bag is cut to the size of the stoma.
2. If you have a ring, roll it in your hands to warm it up. Oh, also when you have cut out the bag, warm it under your arm or in your bra. LOL!! Sounds funny but sticks better if warm!
3. Try paste, this sticks the bag to the skin also!
4. At the hospital, they have (skin prep) alcohol wipes around the area that is (not red)!! If you get it on red skin, you will be saying more than shit, LOL!
5. The easiest way to put the ring on the bag is to seal itself to the skin because when the ring warms with the skin, it sticks better than everything being cold!!!!! When you get used to this, I was down the street and thought, "What is that in my bra?" and it was a spare ring, LOL...
6. Next, what you can do is use paper tape/hospital tape nurses have and tape your bag on because the first 3-4 weeks of staying on are useless, sorry... The outside of the bag then gives the skin time to heal on the inner and it doesn't give you the hassle of the bag coming off all the time!!!
One thing I would say is tell the kids, "Mummy's stoma is sore so if I get grumpy, it's not you, it's the stoma because this is all new and I'm learning what to do!!!!"
""You are not failing at this, it takes time and sometimes the stoma nurse may say do this, but if it's not right for you... don't do it... leakage can be because of lack of sleep, wrong food, wrong bag, don't put soap around the area of the stoma or the bag won't stick!!!
7. Do get the kids involved. Get them to warm the ring or bag, they adjust very well... I don't have it, my son does!!!
8. Laugh with kids if it leaks. "Oh man, I ate too much and my bag exploded!!!
To you, say first treat it like you were cleaning up undigested when your bag has leaked because that's what it is, but when you are comfortable, then it becomes food!!!
99999!!!!!!! A really good tip is to put your stoma bag, rings, paste under a warm hot water bottle while in the shower, then when you hop out, it's ready to go!!!!!
If you have any questions at all???? Please email me and I will get back to you ASAP
!!!!! Even if it's a question the kids have asked!!!!
!!!!!!!!!!! Hope this has given you some tips because we had to do it by ourselves because no one had a stoma person at the hospital before, so it was trial and error!!!
Cheers, Julie.
1. Make sure the bag is cut to the size of the stoma.
2. If you have a ring, roll it in your hands to warm it up. Oh, also when you have cut out the bag, warm it under your arm or in your bra. LOL!! Sounds funny but sticks better if warm!
3. Try paste, this sticks the bag to the skin also!
4. At the hospital, they have (skin prep) alcohol wipes around the area that is (not red)!! If you get it on red skin, you will be saying more than shit, LOL!
5. The easiest way to put the ring on the bag is to seal itself to the skin because when the ring warms with the skin, it sticks better than everything being cold!!!!! When you get used to this, I was down the street and thought, "What is that in my bra?" and it was a spare ring, LOL...
6. Next, what you can do is use paper tape/hospital tape nurses have and tape your bag on because the first 3-4 weeks of staying on are useless, sorry... The outside of the bag then gives the skin time to heal on the inner and it doesn't give you the hassle of the bag coming off all the time!!!
One thing I would say is tell the kids, "Mummy's stoma is sore so if I get grumpy, it's not you, it's the stoma because this is all new and I'm learning what to do!!!!"
""You are not failing at this, it takes time and sometimes the stoma nurse may say do this, but if it's not right for you... don't do it... leakage can be because of lack of sleep, wrong food, wrong bag, don't put soap around the area of the stoma or the bag won't stick!!!
7. Do get the kids involved. Get them to warm the ring or bag, they adjust very well... I don't have it, my son does!!!
8. Laugh with kids if it leaks. "Oh man, I ate too much and my bag exploded!!!
To you, say first treat it like you were cleaning up undigested when your bag has leaked because that's what it is, but when you are comfortable, then it becomes food!!!
99999!!!!!!! A really good tip is to put your stoma bag, rings, paste under a warm hot water bottle while in the shower, then when you hop out, it's ready to go!!!!!
If you have any questions at all???? Please email me and I will get back to you ASAP
!!!!! Even if it's a question the kids have asked!!!!
!!!!!!!!!!! Hope this has given you some tips because we had to do it by ourselves because no one had a stoma person at the hospital before, so it was trial and error!!!
Cheers, Julie.
Past Member
Mar 02, 2014 11:23 am
Hey Pammer! You're new to this, so you're bound to find it daunting - don't worry, you're not alone - we were all the same! So here are some tips that I found useful.
1) In terms of leaks, I found wearing a vest and tucking it into my trousers helped contain the leak if it leaked from the top, so it wouldn't go on my tops, etc.
2) When I was younger, I'd create a little box of supplies I needed when a leak occurred, such as pre-cut baseplate (or uncut with scissors), bags, gauze, etc., and tuck it underneath my bed. That way, if I leaked during the day/night, I didn't have to fumble around and could get to the bathroom quickly with everything I needed.
3) As for supplies, to stop myself from being confused with what I have, I have dedicated drawers in my room filled with supplies, e.g., a drawer full of baseplates, a drawer full of bags. That way, you know where everything is if you need to get to them and know exactly what to order when you run low.
4) In terms of pain, that will slowly subside over time. It's a major operation, so feeling sore is normal. I found holding a pillow over my stomach and pressing lightly (and I mean lightly!!!!) would help the pain if I needed to cough or sneeze.
I know these might seem pretty basic, but we've all got to start somewhere!
Good luck!
Harpreet
1) In terms of leaks, I found wearing a vest and tucking it into my trousers helped contain the leak if it leaked from the top, so it wouldn't go on my tops, etc.
2) When I was younger, I'd create a little box of supplies I needed when a leak occurred, such as pre-cut baseplate (or uncut with scissors), bags, gauze, etc., and tuck it underneath my bed. That way, if I leaked during the day/night, I didn't have to fumble around and could get to the bathroom quickly with everything I needed.
3) As for supplies, to stop myself from being confused with what I have, I have dedicated drawers in my room filled with supplies, e.g., a drawer full of baseplates, a drawer full of bags. That way, you know where everything is if you need to get to them and know exactly what to order when you run low.
4) In terms of pain, that will slowly subside over time. It's a major operation, so feeling sore is normal. I found holding a pillow over my stomach and pressing lightly (and I mean lightly!!!!) would help the pain if I needed to cough or sneeze.
I know these might seem pretty basic, but we've all got to start somewhere!
Good luck!
Harpreet
Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister
dragon2
Mar 03, 2014 12:38 am
Well, I didn't write what I was meant to say. It was, at first, "treat your ileostomy like undigested food." Sometimes, when you have leakage, it's horrible to feel poo all over you. Grif has a towel near his bed just in case because it can set very watery at the start!
Hope this helps, Julie.
There is a pill thickener called NODIA that you can take.
Virgo
Mar 08, 2014 11:15 am
Time will heal and it will get better. I am 1 year after surgery and doing great. I have learned to change my base plate myself, which gives you freedom. I watch what I eat. I change my bag every morning and the base plate every 5 days. I have had a few accidents, but once I got my "belt," this became something of the past. Every now and again, the "stoma lady" will give off weird noises, but hey, after a good laugh, it is forgotten.
I thank God for bringing me through this and making me a better person. You too will look back and be surprised at what you have achieved. Give it time.
Keep strong. God will not forsake you.
pammer
Mar 08, 2014 12:03 pm
Hi. My nurse is bringing me a belt this morning. She was surprised I didn't have one. Hopefully this helps.
Regards,
Pammer
superwoman
Apr 27, 2014 6:21 am
Poor thing... I know exactly how you feel. It was like that for me too... I want to suggest watching YouTube videos to you. There are lots of great ones on ostomies and stomas. They helped me more than anything else :) It really does get easier... It stops being so liquidy and so much after several weeks... Good luck and my heart goes out to you
superwoman
Apr 27, 2014 6:22 am
Poor thing... I know exactly how you feel. It was like that for me too... I want to suggest watching YouTube videos to you. There are lots of great ones on ostomies and stomas. They helped me more than anything else :) It really does get easier... It stops being so liquidy and so much after several weeks... Good luck and my heart goes out to you.