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?

@loricarey

Hi,
My name is Lori,im not good with this. As soon as I get involved I have a bad spell and I'm gone. I have ben sick so many years,to many hospitals. All the big ones. I'm with Cleveland Clinic the last couple. I have tried so many meds for the extreme nausea, they don't work. He said the damage in the colon from the gastroparesis is causing the nausea and vomiting. They are going to do the colostomy bag witch should take the symptoms away. Does anyone know if it will work? They did the P.O.P. procedure to make the food go through but that didn't work, almost forty percent is still in the stomach?

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Hi @loricarey, welcome to Connect. You’ll notice that I moved your message about colostomy bag to this discussion groups called:

– Ostomy: Adapting to life after colostomy, ileostomy or urostomy

I did this so that you can meet others talking about living with a colostomy. Simply click VIEW & REPLY in the email notification to read through the past messages and ask fellow members questions about how to prepare for a colostomy.

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@loricarey

Hi,
My name is Lori,im not good with this. As soon as I get involved I have a bad spell and I'm gone. I have ben sick so many years,to many hospitals. All the big ones. I'm with Cleveland Clinic the last couple. I have tried so many meds for the extreme nausea, they don't work. He said the damage in the colon from the gastroparesis is causing the nausea and vomiting. They are going to do the colostomy bag witch should take the symptoms away. Does anyone know if it will work? They did the P.O.P. procedure to make the food go through but that didn't work, almost forty percent is still in the stomach?

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I go to Mayo on August 20 for evaluation for both a colostomy and urostomy since I have leakage between the colon and bladder. Anyone else have both? How long were you in the hospital? How often was follow ups needed? Have to go to Mayo or at local hospital since I am 300 miles from Mayo. Did you have options to the surgery? How soon did they want to operate when you decided to have the surgery? I have frequent U

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@loricarey

Hi,
My name is Lori,im not good with this. As soon as I get involved I have a bad spell and I'm gone. I have ben sick so many years,to many hospitals. All the big ones. I'm with Cleveland Clinic the last couple. I have tried so many meds for the extreme nausea, they don't work. He said the damage in the colon from the gastroparesis is causing the nausea and vomiting. They are going to do the colostomy bag witch should take the symptoms away. Does anyone know if it will work? They did the P.O.P. procedure to make the food go through but that didn't work, almost forty percent is still in the stomach?

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Things do not sound as if you have had a great time with your GI track. All I know before I had my ostomy put in was I was throwing up everything I ate and drank. I went to the emergency room and was told I was constipated, I knew I wasn't, so I went home with a big jug of stuff and figured I'd try it. It didn't work so I went back again to the ER and asked if the doctor I saw was on duty. He was not, if he were I'd ask for someone else. I was admitted to the hospital, because the doctor I saw know I was not constipated, that was a Wednesday night. All day Thursday they ran test, got me ready for surgery first thing Friday morning. Most of what happened I don't remember I just know that I woke up in ICU with an ostomy and told it could be in for 6 months or forever. It is in forever and I have not thrown up since I left the hospital, that was 3 years ago.

I have had about a third of my GI track removed and getting use to caring for an ostomy, whether it is an ileostomy, a colostomy, or whatever you have, will take time to adjust to. I look at it as getting use to changing a babies poopy diaper. Poop is the food your body cannot use, don't be afraid of it just remember it once was food. You may have to find out what foods you can have and cannot have. You may be able to have everything you like and if you can't getting use to a new lifestyle can be interesting. If you have family and friends that are willing to work with you and your new lifestyle it can be very easy.

Once the doctors do the surgery they will have a better idea what is going on. That is what happened with me. Good luck.

mlmcg

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Thanks for the information. I have a growth between my colon and bladder so they are attached and colon matter gets into the bladder and the UTI's occur. Then I have a high fever and vomit. Antibiotics have taken care of it but the interchange still has the potential. Last episode was 2 weeks ago with 4 days in the hospital. I get constipated from the antibiotics and the pain is terrible. 4 micrograms of morphine didn't touch the pain but it must have relaxed my bowels enough to blow it out and went home an hour later pain free. Afraid that sooner or later the antibiotics won't work and will get into an emergency situation. They want both bladder and lots of colon out. Both at same time? Still researching. Will know more in 10 days on options. I have lived with this for 2 years with about 4 bad infections. So far worth it not to have the surgery as long as I don't damage my kidneys from infections.

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Terrible pain from constipation and antibiotics or surgery…..surgery or pain….pain or surgery. I know what I'd do but I'm not you. I would not recommend waiting until it becomes an emergency. Doctors do not like emergency surgeries they would rather plan on getting a good nights sleep and having something to eat before they do their surgeries. I'm aware of having both the bladder and colon removed, I only know it can be done and it has been done. That's all I know about it.

We can be thankful that doctors know about what is going on, fifty years ago you would be on the cutting edge and the doctors could only guess what to do. You really don't want to damage your kidneys because if you did you could have to have dialysis and than a transplant. Dialysis isn't that bad if you had to have it and neither is a transplant, it just takes time. Good luck.

mlmcg

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@loricarey

Hi,
My name is Lori,im not good with this. As soon as I get involved I have a bad spell and I'm gone. I have ben sick so many years,to many hospitals. All the big ones. I'm with Cleveland Clinic the last couple. I have tried so many meds for the extreme nausea, they don't work. He said the damage in the colon from the gastroparesis is causing the nausea and vomiting. They are going to do the colostomy bag witch should take the symptoms away. Does anyone know if it will work? They did the P.O.P. procedure to make the food go through but that didn't work, almost forty percent is still in the stomach?

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Thank you, silly as it sounds I look forward to it so long as it works. It has ben sooo many years. Many misdiagnosis, it is gastroparesis along with others.

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@mlmcg

Terrible pain from constipation and antibiotics or surgery…..surgery or pain….pain or surgery. I know what I'd do but I'm not you. I would not recommend waiting until it becomes an emergency. Doctors do not like emergency surgeries they would rather plan on getting a good nights sleep and having something to eat before they do their surgeries. I'm aware of having both the bladder and colon removed, I only know it can be done and it has been done. That's all I know about it.

We can be thankful that doctors know about what is going on, fifty years ago you would be on the cutting edge and the doctors could only guess what to do. You really don't want to damage your kidneys because if you did you could have to have dialysis and than a transplant. Dialysis isn't that bad if you had to have it and neither is a transplant, it just takes time. Good luck.

mlmcg

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I really don't want to damage my kidneys so that is the driving force. Maybe just the colostomy and block off the hole in the fistual and keep the bladder intact? Will see. Thanks.

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@mlmcg

Terrible pain from constipation and antibiotics or surgery…..surgery or pain….pain or surgery. I know what I'd do but I'm not you. I would not recommend waiting until it becomes an emergency. Doctors do not like emergency surgeries they would rather plan on getting a good nights sleep and having something to eat before they do their surgeries. I'm aware of having both the bladder and colon removed, I only know it can be done and it has been done. That's all I know about it.

We can be thankful that doctors know about what is going on, fifty years ago you would be on the cutting edge and the doctors could only guess what to do. You really don't want to damage your kidneys because if you did you could have to have dialysis and than a transplant. Dialysis isn't that bad if you had to have it and neither is a transplant, it just takes time. Good luck.

mlmcg

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You are entirely welcome. May everything go as it should. If you need more information after your surgery(s) you know where to go. Good luck.

mlmcg

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A couple of months ago I posted I was going to have an Indiana Cystoplasy Augmentation. It was performed at Cleveland Clinic July 31st. It was a 4.5 hour surgery and my Bladder was expanded from GI Tract and a conduit from my belly button to the bladder. I feel much stronger now and still have two catheters which will be removed on Wednesday. My strength is coming back as I recuperate. I can't say enough great things about the treatment I received at Cleveland Clinic and the surgeon who performed surgery. I should be able to lead a very normal life and resume my activities. I will have to learn how to catherize and hope no problems arise like leaking. While I am not totally out of the woods I am upbeat.

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@palevsky

A couple of months ago I posted I was going to have an Indiana Cystoplasy Augmentation. It was performed at Cleveland Clinic July 31st. It was a 4.5 hour surgery and my Bladder was expanded from GI Tract and a conduit from my belly button to the bladder. I feel much stronger now and still have two catheters which will be removed on Wednesday. My strength is coming back as I recuperate. I can't say enough great things about the treatment I received at Cleveland Clinic and the surgeon who performed surgery. I should be able to lead a very normal life and resume my activities. I will have to learn how to catherize and hope no problems arise like leaking. While I am not totally out of the woods I am upbeat.

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Learning new things takes time, once you have mastered the entire process you will wonder why it took so long. Recovering from surgery takes time too, getting out of bed and walking is one of the best things you can do. You will never be the person you were, now you can be better, a little different but better. Good luck.

mlmcg

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Colostomy crash course for me. In 2013 I had a perf colon, emergency surgery removal of 1/3 of my colon & a temporary colostomy. The hospital in VA setup a bag that attached to a wafer & had to be emptied and cleaned. Initially I developed a blister under the wafer. Thankfully someone else with a colostomy recommended using witch hazel on my skin when I changed the wafer. Wow what a relief, no more blistering. When I got back to Jacksonville I received sample bags from suppliers and found a disposable bag. Another thankful find! Not only did it hold up to the FL heat (I think it was something called an active lifestyle bag) but it didn’t leak and when I was out all I had to do is remove/dispose of the soiled bag and slip on a new one. Definitely made life easier and more livable. I just couldn’t understand once I found the desposible bag why a hospital wouldn’t start with this type of bag instead of dealing with the risk of spreading germs using a reusable bag. Of course the most obvious thing is the inability to “plan” when a bag would become full. Again disposable bag to the rescue. Two other items that I couldn’t do without are the little wipes, one helps remove the sticky to get the wafer off and the other is a skin protector you rub on before applying the wafer.

I also found out my insurance company specifically excluded ostomy supplies. Of course this is totally illogical since it’s not like you can just not use them. I did call the supplier who initially told me it was covered when I ordered my first month of supplies. The supplier told me they have a special phone number and website to use to get the supplies for a lower price if insurance didn’t cover them. So, please do NOT rely on the supplier, contact your insurance company. I also googled and contacted several ostomy manufacturing companies either via their website or toll free number. I received some wonderful samples of different types of bags, carrying pouches (similar to a makeup bag), scissors to trim etc. They were quite generous with the freebies they sent and it helped to see what was available not to mention to have a handy little supply kit to keep in the car.

My ostomy was reversed by the wonderful doctors at Mayo Jax after 6 months. I sure did learn a lot in a short time. In 2017 I was diagnosed with Ulcerative Colitis so either a jpouch or colostomy will probably be in my future.

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@pattykuhns

Colostomy crash course for me. In 2013 I had a perf colon, emergency surgery removal of 1/3 of my colon & a temporary colostomy. The hospital in VA setup a bag that attached to a wafer & had to be emptied and cleaned. Initially I developed a blister under the wafer. Thankfully someone else with a colostomy recommended using witch hazel on my skin when I changed the wafer. Wow what a relief, no more blistering. When I got back to Jacksonville I received sample bags from suppliers and found a disposable bag. Another thankful find! Not only did it hold up to the FL heat (I think it was something called an active lifestyle bag) but it didn’t leak and when I was out all I had to do is remove/dispose of the soiled bag and slip on a new one. Definitely made life easier and more livable. I just couldn’t understand once I found the desposible bag why a hospital wouldn’t start with this type of bag instead of dealing with the risk of spreading germs using a reusable bag. Of course the most obvious thing is the inability to “plan” when a bag would become full. Again disposable bag to the rescue. Two other items that I couldn’t do without are the little wipes, one helps remove the sticky to get the wafer off and the other is a skin protector you rub on before applying the wafer.

I also found out my insurance company specifically excluded ostomy supplies. Of course this is totally illogical since it’s not like you can just not use them. I did call the supplier who initially told me it was covered when I ordered my first month of supplies. The supplier told me they have a special phone number and website to use to get the supplies for a lower price if insurance didn’t cover them. So, please do NOT rely on the supplier, contact your insurance company. I also googled and contacted several ostomy manufacturing companies either via their website or toll free number. I received some wonderful samples of different types of bags, carrying pouches (similar to a makeup bag), scissors to trim etc. They were quite generous with the freebies they sent and it helped to see what was available not to mention to have a handy little supply kit to keep in the car.

My ostomy was reversed by the wonderful doctors at Mayo Jax after 6 months. I sure did learn a lot in a short time. In 2017 I was diagnosed with Ulcerative Colitis so either a jpouch or colostomy will probably be in my future.

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Witch hazel. I cannot remember when I last heard that name. If it worked, use it. I was given a powder, which has helped me when I have an area that hurts, a little raw. I did not know just how fortunate I am until I read your posting. My insurance pays for all of my ostomy supplies. I know that the ostomy suppliers are good at sending you samples.

IF you have to have a forever ostomy you know what to expect. Depending on how your doctor writes the order can make a difference in how your insurance looks at the order and may cover your supplies. You could have to fight with your insurance company each time you place an order, but that would be worth not being stuck with the entire cost.

mlmcg

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Hello. I had urostomy in Dec.2017. Meeting with ur ostomy stoma nurse before surgery helped immensely. Took a few months to get to "know" my attached stoma and pouch jewelry. A few accidents but now it's going well. National ostomy month is in October. So lets celebrate .

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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

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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Prayers and support for good healing and having this resolved. I am facing surgery for both bladder and colon in another month or so. I am ok now and on antibiotics so I don't have an infection before then. Looking back, would you do anything differently? I had 36 stitches for lower bowel removal a couple of years ago and healed ok. Feel lucky about that. Not had a bag then but am now facing two bags in another month or so. Any idea why these complications arose? I am 71 so not a spring chicken but am an old rooster. It will get better.

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