Ostomy: Adapting to life after colostomy, ileostomy or urostomy

<p>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.</p><p>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?</p><p>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?</p>

@mlmcg

I had my ostomy surgery in August of 2014, my sigmoid died a slow death after it received 6 weeks of radiation in 1980. Yes, ostomys can be a problem because they are like babies. You are ready to go out and they want to be emptied. Pain, I have none. Infection, I haven't had any. I have had a third of my GI track removed so there are things I cannot eat. I also have to take vitamins and minerals in pill form because most of my ilium that removed them from my food has been removed. Since I am a female, I know nothing about prostate cancer. Yes, I have had my share of cancer. Four different kinds.

Is there a reason you have not already had an ostomy? Will you get to have the full function of your bladder if you have the ostomy? Is there some other reason you never had the ostomy surgery? It will take time to get get use to the ostomy. The hardest part about getting an ostomy is telling others that you have one. They will be fearful if you are fearful, they will want to know what it is like to have one and you get to tell them.

You will not get to wear tight fitting jeans, mine have pleats and I wear vest, long tops or jackets. You can always wear a nice pair of pleated slacks, shirt tucked in and a jacket then you will look like you did before the ostomy. If you want to wear shorts or a bathing suit it will be up to you just how much of your ostomy you want to show off. The more antibiotics you take you are setting yourself up to be unable to take them ever again. I have a long list of meds I cannot take.

Next week call your doctor and say that you want to talk about an ostomy. Good luck.

mlmcg

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I am fine with my bladder and bowel movements as it is now. It all goes out my rectum and I can pretty much control it. Two infections over the past 2 years are not much of a down side compared to having both bladder and bowel surgery for 2 bags. The doctors want to do both. I don't know how long this will last and if I should have the surgery now while I am in good health for a 71 year old. I don't have any/many food issues and try and keep it none spicy. Don't know anyone else that is similar to me. Prostate cancer was 2005 and fine PSA for the past 11 years so cancer isn't a big issue. Thanks for the coments.

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Having any surgery when you are in good health is better than having emergency surgery, the recovery time is much faster. I had semi-emergency surgery, I was admitted Wednesday night, in surgery Friday morning. I don't remember Thursday, I was either knocked out by the doctors or so sick, I knew I was in good hands, that I don't remember all the test that they ran. Learning how to live with and emptying "2 bags" will require a more alert person who is willing to learn now to do new things. Bending over to pick something up off the floor will be a new experience. You have made changes in your life style, with the surgeries you have had, if you have the "2 bag surgery" you will be making more changes. If you have a support group you may want to discuss your concerns with when. They will either be at your side through it all or you may never see them again. We never know who our real friends are until we are faced with major adversities. I have more people there for me than I ever dreamed of.

Now is time to make the decision to step off that cliff. It could just be a small step down and a smooth path from there. Good luck.

mlmcg

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Thanks for the reply. I am part of an ostomy support group but not where the surgery would take place. My main hospital only deals with the colon so would have to go elsewhere for the bladder. Johns Hopkins in Baltimore since live out there part time(well, 3 hours away). So that means having them do both surgeries. With the radiation that my bowels have had, I am concerned that they would not be easily able to get good tissue for the stoma. When I got the previous infections, I was out of it in about 4 hours and had to get an ambulance ride to the ER for antibiotics. They pumped two bags of liquids into me and gave me antibiotics and sent me home after being there about 4 hours. Second time, I was much better and the ER doctors at the same hospital freaked and sent me to a larger hospital for an admit for 5 days of antibiotics. That really screwed up my bowels and bladder. My urethera was closed before and they forced a catheter into it and now I had more problems with urine than I did before. Neither hospital could do any infection tests since my urine was always compromised/dirty so they just threw meds at me. I know it is better having it in good health but….. will consider it some more.

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I am very thankful for my medical insurance I would never have had to go through the roller coaster ride you had to. I would have been sent to one hospital, and only one, for the surgeries and treated for the infections, even if they could not have done the surgeries at the same time at least they would have been done at the same place. Some of our medical insurances companies su..s and are only interested in their bottom line and not in what is best for us. Good luck.

mlmcg

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It was the hospital, not the insurance company. I first went to a small hospital in southern Maryland but they weren't very high tech. A major hospital 45 miles away was my next stop after being transferred by ambulance. They do colon work but not bladder and they are a fairly large and sophisticated hospital complex but they don't do bladder surgeries. Baltimore is 3 hours further north and no way I was going all that distance since it wasn't a life and death situation. Glad the doctors recognized what their limitations are rather than practice on me. May have it done here in WI or at Mayo if it flares up again. Insurance covered everything which I like.

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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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@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?

Jump to this post

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?

Jump to this post

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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