Ostomy: Adapting to life after colostomy, ileostomy or urostomy

It takes time to become comfortable with an ostomy — a surgically created opening in your abdomen that allows waste or urine to leave your body.

Many questions may run through your mind as you practice good ostomy care and live your life. It can help to talk to others who have been there. Perhaps you’d like to ask others questions like: What can I eat? What about leaks? Can I go back to work after colostomy? Can I ride a bike with an ileostomy? Will everyone figure out I’ve had urostomy surgery just by looking at me? What about intimacy?

Welcome ostomates. Let’s talk frankly about living with an ostomy. Why not start by introducing yourself? What type of ostomy do you have? How’s it going?

I got my colostomy last Monday. Beside the soreness, I am am having cramping in above the navel with waves of nausea that have been going on for 24 hrs. Emptied bag at 2:30 pm yesterday and have not had as much output as before. Started eating. Yesterday had a blueberry muffin and applesauce,small amt of beef stroganoff and small bowl fresh fruit. Supper was can pears and a pack of nabs because I couldn’t eat what was on tray.does your gut have to take a while to get back to normal digestion?

@mpy952

I got my colostomy last Monday. Beside the soreness, I am am having cramping in above the navel with waves of nausea that have been going on for 24 hrs. Emptied bag at 2:30 pm yesterday and have not had as much output as before. Started eating. Yesterday had a blueberry muffin and applesauce,small amt of beef stroganoff and small bowl fresh fruit. Supper was can pears and a pack of nabs because I couldn’t eat what was on tray.does your gut have to take a while to get back to normal digestion?

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Hello @mpy952

While I have never had a colostomy, I have had surgeries of the upper digestive tract and from my experience it does take a while for everything to get back to normal. Have you talked with your doctor about what your expectations should be? Are you still hospitalized?

Keep in touch with us and let us know how you are doing. We wish you well.

Teresa

@mpy952

I got my colostomy last Monday. Beside the soreness, I am am having cramping in above the navel with waves of nausea that have been going on for 24 hrs. Emptied bag at 2:30 pm yesterday and have not had as much output as before. Started eating. Yesterday had a blueberry muffin and applesauce,small amt of beef stroganoff and small bowl fresh fruit. Supper was can pears and a pack of nabs because I couldn’t eat what was on tray.does your gut have to take a while to get back to normal digestion?

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Oh, yes! After two years I still am learning what I can and cannot eat. Soft foods, yogurt, applesauce, "Boost" are my go to foods. I'm surprised you tried beef, it can be very hard to digest. I have spent more time in the bathroom than I ever did just dealing with emptying and cleaning my "bag". Depending on why you had to have an ostomy, where it is on your tummy, and the foods you once ate can make a difference in what you may be able to eat again. Since you are new to your colostomy you may want to talk with your wound nurse to get as much information as you can. Yes, you will use lots and lots of toilet paper.
Good luck,mlmcg

@mpy952

I got my colostomy last Monday. Beside the soreness, I am am having cramping in above the navel with waves of nausea that have been going on for 24 hrs. Emptied bag at 2:30 pm yesterday and have not had as much output as before. Started eating. Yesterday had a blueberry muffin and applesauce,small amt of beef stroganoff and small bowl fresh fruit. Supper was can pears and a pack of nabs because I couldn’t eat what was on tray.does your gut have to take a while to get back to normal digestion?

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I left the hospital this afternoon with dr’s instructions to eat a colostomy diet( the regular diet was served to me). I thought I had read not much red meat was need. I ate about 1/4 cup. No output over 24 hrs and dr. Told me to drink more water. I got Home to some warm chicken and dumpling and it solved the problem. I am ocd and I can tell I will be emptying all the time. I’ve started a food diet to hope to learn what I can eat. I can’t wait to feel better to fix my bathroom for my supplies. Thanks for replying back.

@mpy952

I got my colostomy last Monday. Beside the soreness, I am am having cramping in above the navel with waves of nausea that have been going on for 24 hrs. Emptied bag at 2:30 pm yesterday and have not had as much output as before. Started eating. Yesterday had a blueberry muffin and applesauce,small amt of beef stroganoff and small bowl fresh fruit. Supper was can pears and a pack of nabs because I couldn’t eat what was on tray.does your gut have to take a while to get back to normal digestion?

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As much as I love doctors they may not know how to live with a colostomy, unless they have one, they just know how to put them in. If you have not seen a wound nurse make an appointment with one, try to find one who already has an ostomy. Yes, there are wound nurses who are ostomates. When I first had my ostomy I had limited output. Your body may not process its food the way it once did, so you need to get to know your "new" body. I have a pad of paper and pencil in the bathroom to keep track of how I am doing. If you are given new meds your body my react different. If you add new foods to your diet your body may not be ready for them, keep track of what your body likes and does not like. At a later time you can try it again. You will know, eventually, what you can and cannot eat. Not everyone can eat the foods they did before, while others can. It's trial and error, hopefully not too much error. Setting up your bathroom can be the hardest. Bathrooms were not built for ostomates, if you have more than one bathroom choose the one that works best for you. I wanted to be next to the sink and tub, so I could have access to water and a place to put my supplies. I live by myself and the hall bath is the one I use, guest also use it. Do not be afraid others see your supplies, if they are uncomfortable then they are uncomfortable, don't you be.
Good luck, mlmcg

@mpy952

I got my colostomy last Monday. Beside the soreness, I am am having cramping in above the navel with waves of nausea that have been going on for 24 hrs. Emptied bag at 2:30 pm yesterday and have not had as much output as before. Started eating. Yesterday had a blueberry muffin and applesauce,small amt of beef stroganoff and small bowl fresh fruit. Supper was can pears and a pack of nabs because I couldn’t eat what was on tray.does your gut have to take a while to get back to normal digestion?

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I am 7 days out. My body thermostat has been crazy. Feet always freezing. I’m cold one minute and sweating the next 5 min. All night I would be cold or sweating and always freezing feet with 2 pair of socks on. All day also. I have no fever, taken multiples times. Anybody have any clue?

@mpy952

I got my colostomy last Monday. Beside the soreness, I am am having cramping in above the navel with waves of nausea that have been going on for 24 hrs. Emptied bag at 2:30 pm yesterday and have not had as much output as before. Started eating. Yesterday had a blueberry muffin and applesauce,small amt of beef stroganoff and small bowl fresh fruit. Supper was can pears and a pack of nabs because I couldn’t eat what was on tray.does your gut have to take a while to get back to normal digestion?

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Have your thyroid checked.

@mpy952

I got my colostomy last Monday. Beside the soreness, I am am having cramping in above the navel with waves of nausea that have been going on for 24 hrs. Emptied bag at 2:30 pm yesterday and have not had as much output as before. Started eating. Yesterday had a blueberry muffin and applesauce,small amt of beef stroganoff and small bowl fresh fruit. Supper was can pears and a pack of nabs because I couldn’t eat what was on tray.does your gut have to take a while to get back to normal digestion?

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Welcome to the club! I understand what it is like to have my feet and legs freezing and the rest of my body nice and cozy. It does not matter how many socks I have on at night and how many blankets my legs and feet are wrapped in my feet and legs are freezing. My legs and feet are warm on the outside, to the touch, and freezing on the inside. Are yours too? The only way I have been able to warm my feet is keep moving them, which is fun at night. I had my thyroid checked long before my surgery and I did not have any problems before the surgery. Start your list of things you want to talk with your wound nurse about and your PCP.Good luck, mlmcg

Glad I got some ostomy training before surgery and before I left hospital.
Home health came yesterday for the first time. She wanted to see stoma. Came unprepared without any supplies. She was not up to date on any techniques like crusting, using that ring and didn’t measure to cut the wafer. I called the head of the home health and told them I want a more experienced Home health nurse. Are medicaire supplies the same for every state? She also told me I was allowed only 4 bags and wafers a month. I live in rural Mississippi and had been told different number by the ostomy Clinic . Really I just want their supplies and as an old nurse I can do better than them. IMO

@mpy952

Glad I got some ostomy training before surgery and before I left hospital.
Home health came yesterday for the first time. She wanted to see stoma. Came unprepared without any supplies. She was not up to date on any techniques like crusting, using that ring and didn’t measure to cut the wafer. I called the head of the home health and told them I want a more experienced Home health nurse. Are medicaire supplies the same for every state? She also told me I was allowed only 4 bags and wafers a month. I live in rural Mississippi and had been told different number by the ostomy Clinic . Really I just want their supplies and as an old nurse I can do better than them. IMO

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4 bags! That means you get to clean your stoma only once a week, and never leave your house or have visitors 4 days a week. Hopefully, you don't have diarrhea. There is nothing worst than having a doctor or nurse who have no idea what to do. I receive a three month supply of bags, rings, lubricants, cleaning supplies, and just about anything else I, or my wound/ostomy nurse, want to try. It does not matter where you live or the insurance you have, you should have the supplies you need and/or want to try. I was assigned a "new" wound/ostomy nurse and I feel I knew more than he did, so I asked my PCP to refer me to another hospital. I now have an experienced wound/ostomy nurse and if she has to put in a request to get me more supplies she does. Keep detailed notes on what you ate, how many times you emptied your bag, etc. You will have enough information so you should get more supplies. Unfortunately you may have to fight for every single bag you can get. The bags I use come 10 to a box.Good luck, mlmcg

@mpy952

Glad I got some ostomy training before surgery and before I left hospital.
Home health came yesterday for the first time. She wanted to see stoma. Came unprepared without any supplies. She was not up to date on any techniques like crusting, using that ring and didn’t measure to cut the wafer. I called the head of the home health and told them I want a more experienced Home health nurse. Are medicaire supplies the same for every state? She also told me I was allowed only 4 bags and wafers a month. I live in rural Mississippi and had been told different number by the ostomy Clinic . Really I just want their supplies and as an old nurse I can do better than them. IMO

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Ditto!  Medicare and Health Net allow me to receive

a 3 month supply of bags, pouches, rings, lubricants, cleaning supplies, and anything else I want to try as long as my wound care/ostomy nurse and PCP Doctor approve.

 

@mpy952

Glad I got some ostomy training before surgery and before I left hospital.
Home health came yesterday for the first time. She wanted to see stoma. Came unprepared without any supplies. She was not up to date on any techniques like crusting, using that ring and didn’t measure to cut the wafer. I called the head of the home health and told them I want a more experienced Home health nurse. Are medicaire supplies the same for every state? She also told me I was allowed only 4 bags and wafers a month. I live in rural Mississippi and had been told different number by the ostomy Clinic . Really I just want their supplies and as an old nurse I can do better than them. IMO

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I see ostomy nurse for appt on Wednesday. And I will get this straight. How much does the average person lose with a new colostomy? Madge

@mpy952

Glad I got some ostomy training before surgery and before I left hospital.
Home health came yesterday for the first time. She wanted to see stoma. Came unprepared without any supplies. She was not up to date on any techniques like crusting, using that ring and didn’t measure to cut the wafer. I called the head of the home health and told them I want a more experienced Home health nurse. Are medicaire supplies the same for every state? She also told me I was allowed only 4 bags and wafers a month. I live in rural Mississippi and had been told different number by the ostomy Clinic . Really I just want their supplies and as an old nurse I can do better than them. IMO

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I lost quite a bit of weight after my surgery, but I was in rehab and had other issues. The food was not the best and then I was sent to another rehab. This new place worked with me to see what I was able to eat and even went to the grocery store to get food for me, so I could gain weight. When I left there I had gained back most of the weight I had lost at the other place. I still do not weigh what I once did, but my clothes fit and no one says I look thin, just I look healthy, so I must be doing something right. The average person, if there is such thing, depending on the surgery, how sick you were before the surgery, or how long it takes to find out what foods the body can tolerate, it may be months or years to gain your weight back, if you ever do or want to. I feel that if I am healthy and the doctor is happy, then I am happy.Good luck, mlmcg

In 2013 my husband’s aorta dissected and he had three emergency operations. During the third one he suffered a spinal cord injury that paralyzed his legs, making ordinary elimination impossible. My husband self-caths (I help him) and has an ostomy. To help him with his ostomy I had to learn sterile technique, about wafers and bags and brava strips. We have a routine now, and this makes daily life easier.

Hi @harriethodgson1

I noticed your insightful participation in the Caregivers group, and want to sincerely thank you for sharing about your husband. Having an ostomy can change one’s own physical perceptions, and it is encouraging to know that you are supporting him in his care. May I ask how your husband coped with this lifestyle change? Did you learn the necessary techniques while in the hospital?

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