Ostomy: Adapting to life after colostomy, ileostomy or urostomy

Posted by Colleen Young @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?

@hodagwi

which hospital did you have your surgery?

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I live in Ontario, Canada. Just the local hospital.

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@meg22

I live in Ontario, Canada. Just the local hospital.

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I am working with Mayo Clinic in Rochester, MN. Others have had this surgery by University of Wisconsin Madison. Also saw doctors at John's Hopkins in Baltimore and was in the hospital in Salisbury Maryland, my local hospital. Basically the doctors were surgeons so they saw surgery as the answer even in a non-emergency situation. Not an easy decision either way and don't want to die.

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@hodagwi

It sounds like most people have had urgent medical issues before having the surgery. I am fine now and have been for the past 2 months being on the low dose antibiotics. If I am "healthy" now then why have the surgery? I have been like this for 2 years with off and on infections. Surgeons say to do while healthy but two medical providers who are friends say to hold off as long as possible. I am not getting any younger. I have read lots of case histories and everyone is different as well as talking to people who have had the surgery in the support groups. Still a quandry for me so will think and pray about it.

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I had to wait 6 months after my emergency colostomy surgery to have the reversal surgery when everything was better and I was healthy. Was supposed to be in the hospital 5 to 7 days. Ended up being 17 days, with a second surgery for a small bowel obstruction that was not successful. Healthy is good, but complications do happen. I hope things go well for you! Good luck!

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@meg22

Hi! I had a bowel resection and colostomy on September 21 after two weeks of hospitalization and antibiotics. I was otherwise healthy with no medical history, and then on September 8 I had severe cramping, felt a shift, got a wave of cold from head to toe and started sweating profusely. Turns it I had diverticulitis, and probably diverticulosis for the past couple of years.

Anyway, as frustrating as being in hospital for 20 days was, things went relatively well considering the various complications I faced, and I was very well taken care of by a wonderful team of nurses.

Since I’ve been home, nearly a week, it seems that nothing has gone right.

I have a crease and my appliance leaks from there. I just met with my ostomy nurse yesterday and she put on a convex wafer for me. It’s holding up much better, but there is a bit of poop in my belly button. At least it’s not flowing out like with the flat wafers. I’m low on supplies, so I’ll wait until this evening to decide if it needs changing very badly.

On Sunday my surgical incision began weeping quite a lot, and I went to the ER where I was prescribed antibiotics.

Yesterday I had my first follow up with my surgeon. He took my staples out. A few hours later my incision began to separate, and it was back to the ER. From the time we noticed the separation to when I was treated it opened up significantly more. They packed it and put steri strips across as well as a sticky gauze dressing. I have an appointment tonight with the nurse care clinic for them to change out the dressings if need be. I suspect they will need to be as the weeping is soaking through the dressing.

My surgeon plans for me to have a new vacuum dressing applied in the next couple of days. I had one in hospital. He says this one will be a little higher quality so it’ll be less bothersome.

Anyway, I’m pretty frustrated overall. I’ve been in fairly good spirits the whole time, but near the end at the hospital and now at home I think my brain is catching up with what’s been happening, and I’m having a tough time. I’m not much of a crier or a complainer, but I’m so frustrated and a bit scared. And frustrated for my fiancée who has taken on so much and is just as helpless as I am with how to deal with all this new medical stuff. She’s so stressed. We both are.

I already see a psychiatrist regularly, so I do have that support. It’s just that this is the first time ever in my life that I’ve not had any say in anything to do with my body. I can’t do anything to really stop the incision from separating. I’m not good enough at changing appliances that I feel comfortable with the knowledge that I’m going to have to change the whole thing on my own for the first time probably today or tomorrow.

The plan is to have reversal surgery in about four months. Hopefully everything heals up well and it can happen.

So that is where I’m at. Not the greatest place and brand new to the world of medical issues and having zero control over what’s happening.

Thanks for listening.

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@meg22 I thought I went through hell, but my hell was nothing like what you are going through. Welcome to the land of the living. Yes, every tiny hole or crease the poop can find, it will. If you have not found out yet how to put on your appliance – pouch or bag – so you do not have creases, with time you will have it worked out. In the meantime don't make any major plans. It took me months before I did not smell. Diet has a lot to do with the process. I am unable to have anything in the cabbage family or the onion family. Then there are those beans. I have had my ostomy for 4 years and I still can not have these foods. Beets were the only vegetable I was able to have in rehab. I hope you like beets. Tomatoes have skins and seeds. Sorry, I'm not going to go down that road right now.

I had staples once, and that was enough. I don't think doctors have ever had them or they wouldn't put anyone through that. Not having enough supplies can be a problem, when I order then now I always order just a little more than I need, just in case. I do not have to worry about cleaning out poop from my belly button, because of my surgeries they really cut me open and took it away. Why, I do not know because I never ask. I was "packed" every day because the doctors wanted me to heal from the inside out, no nice incision just a big scar that tape will not stick to.

There is nothing wrong with being scared, you do not have anything to compare this with. You will know what kind of person you want to marry, if she can put up with everything you are going through and still be by your side. If you think you are frustrated now, it could get worse. I was told that I needed to keep extra supplies with me at all times, just in case. I have never had to use them – this is when a backpack comes in handy, or something like it. Crying is better than screaming, throwing or hitting something when you are screaming at, throwing at or hitting something that has flesh and blood, because you are frustrated. When you have a support person or group who will be there when needed you are fortunate, not everyone has such a "family".

When I had my surgery the doctor said it could be a 6 months or forever ostomy. I have a forever ostomy. You DO have control of your body, just not what or how you expected it to be. Take a deep breath, hug yourself, and tell yourself that you are okay and will get through this "new experience", one way or another. Remember Connect is here 24/7, you may not get an answer that fast, but you will get an answer.

mlmcg

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@meg22

Hi! I had a bowel resection and colostomy on September 21 after two weeks of hospitalization and antibiotics. I was otherwise healthy with no medical history, and then on September 8 I had severe cramping, felt a shift, got a wave of cold from head to toe and started sweating profusely. Turns it I had diverticulitis, and probably diverticulosis for the past couple of years.

Anyway, as frustrating as being in hospital for 20 days was, things went relatively well considering the various complications I faced, and I was very well taken care of by a wonderful team of nurses.

Since I’ve been home, nearly a week, it seems that nothing has gone right.

I have a crease and my appliance leaks from there. I just met with my ostomy nurse yesterday and she put on a convex wafer for me. It’s holding up much better, but there is a bit of poop in my belly button. At least it’s not flowing out like with the flat wafers. I’m low on supplies, so I’ll wait until this evening to decide if it needs changing very badly.

On Sunday my surgical incision began weeping quite a lot, and I went to the ER where I was prescribed antibiotics.

Yesterday I had my first follow up with my surgeon. He took my staples out. A few hours later my incision began to separate, and it was back to the ER. From the time we noticed the separation to when I was treated it opened up significantly more. They packed it and put steri strips across as well as a sticky gauze dressing. I have an appointment tonight with the nurse care clinic for them to change out the dressings if need be. I suspect they will need to be as the weeping is soaking through the dressing.

My surgeon plans for me to have a new vacuum dressing applied in the next couple of days. I had one in hospital. He says this one will be a little higher quality so it’ll be less bothersome.

Anyway, I’m pretty frustrated overall. I’ve been in fairly good spirits the whole time, but near the end at the hospital and now at home I think my brain is catching up with what’s been happening, and I’m having a tough time. I’m not much of a crier or a complainer, but I’m so frustrated and a bit scared. And frustrated for my fiancée who has taken on so much and is just as helpless as I am with how to deal with all this new medical stuff. She’s so stressed. We both are.

I already see a psychiatrist regularly, so I do have that support. It’s just that this is the first time ever in my life that I’ve not had any say in anything to do with my body. I can’t do anything to really stop the incision from separating. I’m not good enough at changing appliances that I feel comfortable with the knowledge that I’m going to have to change the whole thing on my own for the first time probably today or tomorrow.

The plan is to have reversal surgery in about four months. Hopefully everything heals up well and it can happen.

So that is where I’m at. Not the greatest place and brand new to the world of medical issues and having zero control over what’s happening.

Thanks for listening.

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Hi @meg22,

I'm truly sorry to hear all that you are going through, and I want to tell you that you've come to the right place to talk with people who have similar experiences and to get support from members who understand what you are going through – welcome.

You've just had major surgery, so allow yourself to feel physically and emotionally exhausted. Everyone recovers differently, and following this surgery many people have changes in how their bowel works. Part of your large bowel has been removed, making it shorter, so stools pass through more quickly and can be loose and frequent. It may take some time for the bowel to settle down, and most people find that, with time, symptoms become manageable.
Here's some information from Mayo Clinic about recovery after colostomy:
https://www.mayoclinic.org/diseases-conditions/colon-cancer/in-depth/ostomy/art-20045825
I'm glad you've connected with @hodagwi and @thull, and I'm certain other members will return to share more insights with you.
I also found this information about colostomy, https://medlineplus.gov/ency/article/002941.htm, and based on that, may I ask if your health care team is certain that it is the wound (incision) breaking open, and no other complication?

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I have ileostomy. Need to know if anyone gets uti since having it done.

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How do I tell if I have urinary tract infection if I have an urostomy?

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Hi @jimmy2248. You may have noticed that I move your post on having urinary tract infections with an urostomy to this existing thread on ostomy's. I did this so that you can connect with others who have ostomy's. Click VIEW & REPLY in your email and you will be able to read what past members have posted about living life with ostomy's.

I wanted to introduce you to fellow Connect members @mlmcg and @hodagwi as they have an ostomy and may be able to help answer your question.

@jimmy2248 what symptoms do you have that makes you think you may have a urinary tract infection?

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@ethanmcconkey

Hi @jimmy2248. You may have noticed that I move your post on having urinary tract infections with an urostomy to this existing thread on ostomy's. I did this so that you can connect with others who have ostomy's. Click VIEW & REPLY in your email and you will be able to read what past members have posted about living life with ostomy's.

I wanted to introduce you to fellow Connect members @mlmcg and @hodagwi as they have an ostomy and may be able to help answer your question.

@jimmy2248 what symptoms do you have that makes you think you may have a urinary tract infection?

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I have/had flank pain in side and back ; stomach pain and vomit. Doctor did culture and found bugs. Other doctors say that a stoma will always show bacteria as the small intestine is a mucus membrane. Just trying to see how others handle this scenario.

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@jimmy2248

I have/had flank pain in side and back ; stomach pain and vomit. Doctor did culture and found bugs. Other doctors say that a stoma will always show bacteria as the small intestine is a mucus membrane. Just trying to see how others handle this scenario.

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I would like more information about what you are going through. I have had a UTI (urinary tract infection) and did not have any pain. I was put on antibiotics and did not have any dribbling and made it to the bathroom, especially at night, not wetting myself. Now that I am off the antibiotics I have a little dribbling. What kind of "bugs" did the doctor find? Usually when "bugs" are found we are given some type of antibiotic.

I have an ostomy not a urostomy, so I may not be able to answer your questions. If you do ask a question I cannot answer I will let you know and not try to "play" doctor. However, if you are not getting help from one doctor you can always try another one. Good luck.

mlmcg

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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!

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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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