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Ostomy: Adapting to life after colostomy, ileostomy or urostomy

Posted by @colleenyoung, Sep 20, 2017

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?

REPLY

@darin

Yes. I am trying to see my doctor in mayo to see if there are any other options. I currently have been seeing a gi doctor at sanford in fargo

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I'm glad to hear that, @darin. While I'm sure each individual case is different, I've noticed that a lot of people who have colostomies, etc. tend to have it reversed after 6 months or so. It is not always permanent.

We also have a discussion group on colitis, here is the link, https://connect.mayoclinic.org/discussion/recurring-diverticulitis-colitis/. I would like to invite @suez and @lisabeans who have both discussed colitis treatments and meds they have taken.

I would like to know how this all works out for you. Will you keep in touch?

@hopeful33250

I'm glad to hear that, @darin. While I'm sure each individual case is different, I've noticed that a lot of people who have colostomies, etc. tend to have it reversed after 6 months or so. It is not always permanent.

We also have a discussion group on colitis, here is the link, https://connect.mayoclinic.org/discussion/recurring-diverticulitis-colitis/. I would like to invite @suez and @lisabeans who have both discussed colitis treatments and meds they have taken.

I would like to know how this all works out for you. Will you keep in touch?

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I have no input/experience with colostomy. I take Lialda for my colitis and it seems to be helping in that my flares are not as painful and intense as in the beginning. And, of course, I watch what I eat. Sorry not to be of more help. Good luck.

My spouse has a urostomy following removal of his bladder, etc., due to bladder cancer. He also has CKD from the chemo he is on. My issue is the strong odor of his urine and the night bag that he must wear due to his abundant urine output at night. Daily, we clean with a combo of vinegar and water (leaving it in night bag to soak until nighttime, but the bag takes on the odor, so is still offensive. I'd like to know if others have dealt with this issue and how, and/or with what? Are there bags less prone to absorbing odor? Better ways to clean the bag? Any and all suggestions will be appreciated! Thank you!

Welcome to Connect, @nickkarenl. I’m tagging @jimmy2248 @loricarey @hodagwi @palevsky @predictable @rayleemorris @manveen @mlmcg, as they may have some valuable experience to share.

Some common causes of urostomy odour:
Urinary tract infections and kidney infections can make your urine smell stronger and produce more mucus.
Some medications can affect the odour e.g antibiotics, dietary supplements etc
Certain foods can cause increased odour
Ostomy: Adapting to life after colostomy, ileostomy or urostomy" https://www.mayoclinic.org/diseases-conditions/colon-cancer/in-depth/ostomy/art-20045825

@nickkarenl, could you share a few more details? When was your spouse diagnosed with bladder cancer? Did he have the urostomy recently?

@kanaazpereira

Welcome to Connect, @nickkarenl. I’m tagging @jimmy2248 @loricarey @hodagwi @palevsky @predictable @rayleemorris @manveen @mlmcg, as they may have some valuable experience to share.

Some common causes of urostomy odour:
Urinary tract infections and kidney infections can make your urine smell stronger and produce more mucus.
Some medications can affect the odour e.g antibiotics, dietary supplements etc
Certain foods can cause increased odour
Ostomy: Adapting to life after colostomy, ileostomy or urostomy" https://www.mayoclinic.org/diseases-conditions/colon-cancer/in-depth/ostomy/art-20045825

@nickkarenl, could you share a few more details? When was your spouse diagnosed with bladder cancer? Did he have the urostomy recently?

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My husband was diagnosed with bladder cancer in 10/2011. He had neoadjuvant chemo for several months, his major surgery including formation of the ileal conduit for ostomy in spring 2012. Lots of complications, and ureter revision surgery in summer 2013. He’s been on the kidney transplant list for a couple years now, though is currently inactive on the list because his GFR is at 24…higher than when he was first places on the list.

Wondering if theres any good reports of this. Have had colitis for 5 years and tried alot of drugs but the only one that worked was simponi. Unfortunately I was diagnosed with skin cancer after being on it. So after 3 surgeries to remove my melanoma and glands from my armpit, I am on entyvio and it is not working very well. So now I am worried I may need this procedure and I have a very physical job, and worried I will have to carry a bag the rest of my life. I'm only 43 and wondering if anyone has some advice or maybe something like this.

Hello,
Is there research, professional opinion or any personal experience regarding doing a Keto Diet with an ieostomy? I worry about not getting enough fiber and staying well hydrated. Thank you

Welcome to Connect, @mrigs.

You may notice that I moved your message to this existing discussion titled, "Ostomy: Adapting to life after colostomy, ileostomy or urostomy”
I did this as I thought it would be beneficial for you to be introduced to the many members who are talking about much of what you are experiencing.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

Here’s some information from Mayo Clinic about "What is a good ileostomy diet?” that you might wish to view.
https://www.mayoclinic.org/tests-procedures/j-pouch-surgery/expert-answers/ileostomy-diet/faq-20322775

May I ask if you would share more about why you've chosen to follow a ketogenic diet with the ileostomy, @mrigs?

@kanaazpereira

Welcome to Connect, @mrigs.

You may notice that I moved your message to this existing discussion titled, "Ostomy: Adapting to life after colostomy, ileostomy or urostomy”
I did this as I thought it would be beneficial for you to be introduced to the many members who are talking about much of what you are experiencing.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

Here’s some information from Mayo Clinic about "What is a good ileostomy diet?” that you might wish to view.
https://www.mayoclinic.org/tests-procedures/j-pouch-surgery/expert-answers/ileostomy-diet/faq-20322775

May I ask if you would share more about why you've chosen to follow a ketogenic diet with the ileostomy, @mrigs?

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Thank you @kanaazpereira for responding so quickly and guiding me in the right direction. Honestly, I’m only doing the Keto Diet to support my husband because he wanted to jump start his own weight loss. He understands if I can’t do it fully with him. I just wasn’t sure if ketosis was a good idea for me, although I’m sure I’d benefit from just cutting back on carbs and sugar.

Four years ago I was discharged from the hospital without a third of my GI track. The sigmoid was gone and most of my ileum had been removed because my pelvis had received radiation in the 80's. Dead and scar tissue had been removed from the GI track that had been radiated.

I now live with a forever ostomy. Without the ileum my diet means limited nuts, seeds and no skins. Fruits have to be peeled, so I eat canned or dried. Tomatoes need to be peeled and seeded. Beans are iffy, corn has to be white young corn. No corn on the cob or yellow corn, my body cannot process it. Animal flesh is hard to process, I can do eggs and yogurt. Yogurt is my go to food, without the added fruits. If I want fruit I will add it myself, without the sugar. With an ileostomy foods are not fully processed so I take pills or shots to make sure I get the vitamins and minerals I need.

If your husband wants to loose weight the best way is not a diet but a forever lifestyle. It will be heavy in fruits and vegetables, low in fat, sugar, and sodium. Pasta and animal protein are limited to a small portion of your intake. Beef should be limited to once a week or every other week, fish, chicken or turkey can fill in the rest of the week.

When my urine is strong that means I am not getting enough water. Water should always be our beverage of choice, minimum 8-8oz glasses each day. Everything else has something added to it that is not good for the body.

If you can accept that you have a new lifestyle and it will be forever, your body will be happy. If your body is happy you will be happy. Good luck.

mlmcg

@mlmcg

Four years ago I was discharged from the hospital without a third of my GI track. The sigmoid was gone and most of my ileum had been removed because my pelvis had received radiation in the 80's. Dead and scar tissue had been removed from the GI track that had been radiated.

I now live with a forever ostomy. Without the ileum my diet means limited nuts, seeds and no skins. Fruits have to be peeled, so I eat canned or dried. Tomatoes need to be peeled and seeded. Beans are iffy, corn has to be white young corn. No corn on the cob or yellow corn, my body cannot process it. Animal flesh is hard to process, I can do eggs and yogurt. Yogurt is my go to food, without the added fruits. If I want fruit I will add it myself, without the sugar. With an ileostomy foods are not fully processed so I take pills or shots to make sure I get the vitamins and minerals I need.

If your husband wants to loose weight the best way is not a diet but a forever lifestyle. It will be heavy in fruits and vegetables, low in fat, sugar, and sodium. Pasta and animal protein are limited to a small portion of your intake. Beef should be limited to once a week or every other week, fish, chicken or turkey can fill in the rest of the week.

When my urine is strong that means I am not getting enough water. Water should always be our beverage of choice, minimum 8-8oz glasses each day. Everything else has something added to it that is not good for the body.

If you can accept that you have a new lifestyle and it will be forever, your body will be happy. If your body is happy you will be happy. Good luck.

mlmcg

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Thanks for your tips. I feel I’ve adapted well to my ileostomy lifestyle over the last +6years and know how different foods affect me. I’ll continue to listen to my body and find my own balance, I just want to make sure there’s not an extra danger (for me w/o a colon) to be more keto friendly

Hi, I am a 71 year old white male who also had pelvic radiation in 2006 for prostate cancer. In 2016 a fistual developed with a hole in the bladder with urine being funneled into the colon with colon material also getting into the bladder and resulting in bladder/kidney infections. I was told that only way to "cure" the situation was take out the bladder and put in a bag and take out a lot of the colon and replace with another bag, a two bagger, I guess. I can live with my urine coming out of my colon but not with the periodic infections that I get over the past 3 years, usually 2-3 a year, but antibiotics has taken care of it so far. I am on a low dose antibiotics daily now after getting a high dose for a week beginning on New Years Eve when infection happened. It cleared up. Yes, I know that this will happen again and that I am relatively healthy now to have both surgeries at the same time. Lots of lifestyle changes and eating changes if have the surgery and no guarantee that infections will go away. So what to do? No decision is a decision so have put it off so far. Your case with radiation is the closest to mine I have seen so far. Thoughts and issues you have faced or didn't know until after the surgery? I am being seen my Mayo. Thanks. Rich

@nickkarenl

My husband was diagnosed with bladder cancer in 10/2011. He had neoadjuvant chemo for several months, his major surgery including formation of the ileal conduit for ostomy in spring 2012. Lots of complications, and ureter revision surgery in summer 2013. He’s been on the kidney transplant list for a couple years now, though is currently inactive on the list because his GFR is at 24…higher than when he was first places on the list.

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@nickkarenl I wanted to also let you know about the Transplants group and expert blog on Connect in case your interested in connecting with others on the wait list:

> Transplants group https://connect.mayoclinic.org/group/transplants/
> Transplant page (blog) https://connect.mayoclinic.org/page/transplant/

Has your husband experienced frequent infections like @hodagwi describes in his last message? If yes, how are they managed?

Since a few members in this incredible group have mentioned Lynch syndrome, I thought you might be interested in viewing this recent video by Mayo Clinic gastroenterologist and medical oncologist, Dr. Frank Sinicrope, M.D.
– Understanding Lynch Syndrome https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/

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