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 learned some techniques from stoma nurses and others from my husband, a retired Mayo physician. Together, we’re a caregiving team. One problem I haven’t quite solved is getting enough sleep.

I love your phrase, “Together, we’re a caregiving team.” Kudos!

Liked by trishanna

@harriethodgson1

I learned some techniques from stoma nurses and others from my husband, a retired Mayo physician. Together, we’re a caregiving team. One problem I haven’t quite solved is getting enough sleep.

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Welcome to the  club!mlmcg

Thank you Kanaaz. This is my 21st year as a family caregiver.

This is not a reply actually, but a question. I am new to this website so not sure how to write a question. At the age of 90, I am a new owner of a permanent colostomy. In December, 2017 I had emergency surgery for colon cancer, thus I am learning how to cope with this new lifestyle.
The question I have concerns amount of stool. I don’t seem to have as much as I did before the colostomy, is that normal. At first, of course, I didn’t feel like eating but now a little over a month later, I am eating more normally but my stool seems less.
Is this normal?
Thank you,
Gerda

Welcome Ostomate to your new lifestyle. I do not have colon cancer so I may not be able to answer all of your questions, but I do have an ostomy (August 2014) and I’m still learning how to live with it.

Depending on how much of the colon was removed could determine the amount, type and how often you have to empty your bag/pouch/appliance. Give yourself 6 months for your body to become use to its new lifestyle. I have not had a blockage or constipated, just diarrhea, but if you feel uncomfortable about your amount of poop talk with your wound/ostomy nurse. I’m surprised you are eating a normal diet this soon after surgery. I was on a very limited diet after my surgery then I added a new food, in small amounts, one at a time until I knew if I could eat it. I’m still careful when I eat someone else’s food, because I don’t always know what’s in it.

What was normal for you before your surgery, may not be normal for you now. No two people are “normal”. For a week you may want to keep a diary of what went in your body and what came out. That way when you see the nurse you have something to show him/her. I keep a list of what comes out and when but not what I put in because I don’t change the foods I eat. Good luck. mlmcg

I am looking for someone to come in and change my 90 year old mother's apparatus once a week. She lives in Payson, AZ. I live 90 miles away and will come up also weekly but need additional help weekly. She does not have insurance for this so will have to pay directly out of pocket. I need someone who is qualified and trustworthy and would be willing to come in once a week and just change her apparatus. I have tried most of the home health care agencies and they either are not qualified, or charge a lot of money, or want a minimum of 4 hours.
Does anyone have any suggestions for this unusual dilemma?
Thank you,
Joan, Gerda's daughter

@gerda90

I am looking for someone to come in and change my 90 year old mother's apparatus once a week. She lives in Payson, AZ. I live 90 miles away and will come up also weekly but need additional help weekly. She does not have insurance for this so will have to pay directly out of pocket. I need someone who is qualified and trustworthy and would be willing to come in once a week and just change her apparatus. I have tried most of the home health care agencies and they either are not qualified, or charge a lot of money, or want a minimum of 4 hours.
Does anyone have any suggestions for this unusual dilemma?
Thank you,
Joan, Gerda's daughter

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Have you tried looking into a retired RN who might live in one of the RV parks down there? We live in RV resort and there are many retired nurses willing to help out people. They do it for the “need” not compensation. Maybe put ad in paper. My husband had transplant in 2009 then lost his bladder to cancer in 2016.

@gerda90

I am looking for someone to come in and change my 90 year old mother's apparatus once a week. She lives in Payson, AZ. I live 90 miles away and will come up also weekly but need additional help weekly. She does not have insurance for this so will have to pay directly out of pocket. I need someone who is qualified and trustworthy and would be willing to come in once a week and just change her apparatus. I have tried most of the home health care agencies and they either are not qualified, or charge a lot of money, or want a minimum of 4 hours.
Does anyone have any suggestions for this unusual dilemma?
Thank you,
Joan, Gerda's daughter

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If you can find someone willing to come in without ostomy experience but willing to learn they are not that hard to change. I had to learn how to empty and change my ostomy in March after two strokes, one in November and the other in December, and my ostomy surgery was in August, and throw in 100 days in rehab. There are people on line showing how they empty and change their ostomy, all are good, some better than others. I take it your mother can empty/clean her own bag/pouch/appliance. (I have a retired hair dresses who comes to my home to cut my hair, for no fee.) I might check the local hospital or doctor's office to see if they know of someone who would be willing to help. Good luck. mlmcg

@gerda90

I am looking for someone to come in and change my 90 year old mother's apparatus once a week. She lives in Payson, AZ. I live 90 miles away and will come up also weekly but need additional help weekly. She does not have insurance for this so will have to pay directly out of pocket. I need someone who is qualified and trustworthy and would be willing to come in once a week and just change her apparatus. I have tried most of the home health care agencies and they either are not qualified, or charge a lot of money, or want a minimum of 4 hours.
Does anyone have any suggestions for this unusual dilemma?
Thank you,
Joan, Gerda's daughter

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hair dresses? hair dresser! mlmcg

@gerda90

I am looking for someone to come in and change my 90 year old mother's apparatus once a week. She lives in Payson, AZ. I live 90 miles away and will come up also weekly but need additional help weekly. She does not have insurance for this so will have to pay directly out of pocket. I need someone who is qualified and trustworthy and would be willing to come in once a week and just change her apparatus. I have tried most of the home health care agencies and they either are not qualified, or charge a lot of money, or want a minimum of 4 hours.
Does anyone have any suggestions for this unusual dilemma?
Thank you,
Joan, Gerda's daughter

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Hi Joan @gerda90,

Besides the excellent suggestions given by @ktaubman and @mlmcg, you could also look into asking a "Wound Care Specialist."
Here are two websites, that might help:
– Wound Care Centers https://www.woundcarecenters.org
– American Board of Wound Management https://portal.abwmcertified.org/ABWMweb/Directory/ABWMcontent/Directory.aspx

@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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It does take a bit of "trial and error" to figure out what you can and cannot eat dafely and without discomfort. 8 years ago, my colon perforated resulting in sepsis, a 2 week coma and causing the removal of my entire colon, leaving me with my shiney new ostomy and a life forever changed . For me, there are certain foods that are impossible to process. Vegetables and most fruit cause crippling cramping; dairy causes gas which fills up the bag and we don't want that. Nailing down the new "rules" literally took years and coming to terms with the fact that I could no longer eat the same as before. It plays with your head and your sense of self to have these limitations while everyone else takes their food for granted. Not easy, but doable…because there is no other option

Back in January 2016 I had surgery for an enlarged prostate. The surgeon performed a prostatectomy . Unfortunately I had many complications scar tissue which led to a supra pubic catheter in November 2017. My stricture and sphincter have scar tissue in an area where it is only seen 1/1000. Also my bladder will not perform for me to urinate and empty. Hence after deliberating I have elected to have Indiana augmentation cystoplasty. Are there any of you who know someone possibly I can relate to since you are in a hospital 5-10 days and home recuperating for up to 3 months-4months. Doctors insist I will be able to resume all my normal activities and travel. Many questions have been answered by hospital doctors but hearing it from individuals that have experienced this directly would assuage my concerns.

@palevsky

Back in January 2016 I had surgery for an enlarged prostate. The surgeon performed a prostatectomy . Unfortunately I had many complications scar tissue which led to a supra pubic catheter in November 2017. My stricture and sphincter have scar tissue in an area where it is only seen 1/1000. Also my bladder will not perform for me to urinate and empty. Hence after deliberating I have elected to have Indiana augmentation cystoplasty. Are there any of you who know someone possibly I can relate to since you are in a hospital 5-10 days and home recuperating for up to 3 months-4months. Doctors insist I will be able to resume all my normal activities and travel. Many questions have been answered by hospital doctors but hearing it from individuals that have experienced this directly would assuage my concerns.

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Welcome to Connect, @palevsky. I'm tagging @predictable on this discussion about augmentation cytoplasty in case he has some experience in his circle of connections with this procedure. While the recovery time seems to be quite long (3-4 months), the promised end result sure would make the procedure worthwhile. Palevsky, what information have you gathered so far about benefits and risks of the procedure? Are there possible complications? Do you live with a urostomy now?

@palevsky

Back in January 2016 I had surgery for an enlarged prostate. The surgeon performed a prostatectomy . Unfortunately I had many complications scar tissue which led to a supra pubic catheter in November 2017. My stricture and sphincter have scar tissue in an area where it is only seen 1/1000. Also my bladder will not perform for me to urinate and empty. Hence after deliberating I have elected to have Indiana augmentation cystoplasty. Are there any of you who know someone possibly I can relate to since you are in a hospital 5-10 days and home recuperating for up to 3 months-4months. Doctors insist I will be able to resume all my normal activities and travel. Many questions have been answered by hospital doctors but hearing it from individuals that have experienced this directly would assuage my concerns.

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Hi @palevsky. Glad Colleen asked me to weigh in. At the outset, I emphasize that I have not had a urostomy, because by good fortune my sphincter was not damaged in the TURP surgery that removed a large piece of my prostate.

Not so with my father, whose urethra and sphincter were rendered useless by his TURP surgery, and a urostomy was necessary. The possibility of an Indiana autmentation cytoplasty was discussed with him, but never recommended because his bladder was sufficient to hold his urine. His issue was whether to self-catheterize through an artificial stoma through his body wall. He chose not to do so and had a tube installed permanently through the stoma into an external urine bag. He was nearly 90 years old at the time of his surgery, and his medical team thought self-catheterization presented too high a risk for infection. Unfortunately, the permanent tube became infected every few weeks over the five years he survived after the surgery. All that time, though, he had no regrets about his choices. What he taught me made my choices better, and I'm grateful.

I'll be glad to respond to any questions you have about me or my father. I'm sure that whatever you choose to do, it will be successful, and you'll carry on in comfort and confidence. Martin

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