Colleen Young, Connect Director
@colleenyoung
@colleenyoung
Posts: 8094
Joined: Jul 23, 2014
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 received my stoma 5 years ago and what has worked for me, since my skin is sensitive to all things that stick to my body, I use "No Sting Barrier Film". A few years ago I started to have the irritation. Figuring I was not cleaning the skin under the one piece pouch, I got out the "No-Rinse Foaming Body Wash", I was given when I was in the hospital. It works, I do rinse the Body Wash off. I also noticed that the tape was not sticking, which means I was not holding the pouch in place long enough (3-5 minutes) for the tape to "mold" to my body. If you do not have "hot" hands just use the hairdryer. If that fails try the rings, 3-5 days is a normal time for a pouch change. I have also found out that how many showers you take can tell you how often the pouch needs to be changed. (Water gets under the tape.) If you have hair under the tape you may want to remove it or if you sweat a lot these can cause the tape not to stick so the pouch has to be changed more often. At one time almost all Ostomy Nurses had an ostomy, now more people are going into the field. If you can, ask for an ostomy patient/nurse. I hope this info can help. Good Luck.
mlmcg
@mimcg…Thanks very. helpfull. Maybe my expectations for more days is unrealistic. I’ll try yor suggestions.
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engelee
@engelee
@engelee
Posts: 29
Joined: Oct 06, 2011
When I saw colostomy, ileostomy, urostomy on Mayo Clinic Digestive Health I was so happy. I have so much I need to know and I can share some things. I then had this feeling that I was needed in the bathroom. I am not sure what can be worst than a full bag/pouch/appliance of liquid and air. I had to clean the front of toilet, the floor, the clamp, my hands, and change my clothes. At least I did not hit my shoes. I know we are to empty our bags when it is a third full, but I have not figured out when the bag is 1/3 full, when I have diarrhea my bag goes from empty to full in a matter of minutes.
My ostomy is the results of radiation I had on my lower abdomen over 30 years ago. It took that long for my sigmoid to die. I now have an ostomy, for life, and a third of my GI track is gone. I have not found anyone, yet, who has had lymphoma, with their sigmoid killed from radiation wearing a bag over their stoma.
Learning to clean and replace your bag, once you get home from the hospital, can be an experience, and one not for sissies. Poop is your friend. It is the food you put in your mouth that the body could not use. When we forget it is food we may become fearful of poop and do not want to look at it or willing to have it get on our hands.
What to eat and what not to eat is my biggest problem. With a third of my GI track gone I have to take lots of meds to make up for what my body cannot get out of the food I eat. I do eat a balanced diet and try new things. The diarrhea I am having now could be a reaction to a new med I am taking, but it could be from the new food I am trying out. I eat mostly veggies. I do have some chicken because I am unable to eat beans. Plain Greek Yogurt is my go-to food. Cheese is one of my other go-to. Ice cream is my only bad food, it takes a month for me to go through a quart. Canned fruit with yogurt is much better than fruit in your yogurt. I live by myself so I do not have to cook meals, any suggestions in what to eat would be helpful.
mlmcg
I have 2ostomies. Food is a cautious area for me. I eat brown rice, appropriate fruit,peanut butter and Jif marshmallo. All in small amount. Wheaties for breakfast, dinner my husband is creative within guidelines. On my last visit to Dr. Connor Loftus (GI) at Mayo he came up immediately with 2 possibilities; microscopic colitits and small bowelovergrowth. His diagnosis was cleared by an immediate colonoscopy with 8 biopsies of colon tissue ( that was negative) . So, he started me on doxycycline for small bowel overgrowth. The diarrhea cleared up in 12 hours. I continued the med for 10 days. Note: while waiting for my annual appt. at Mayo I went to local doctors and not one mentioned either of Dr. Onnors’s diagnosis. He is sooo talented.
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engelee
@engelee
@engelee
Posts: 29
Joined: Oct 06, 2011
I have 2ostomies. Food is a cautious area for me. I eat brown rice, appropriate fruit,peanut butter and Jif marshmallo. All in small amount. Wheaties for breakfast, dinner my husband is creative within guidelines. On my last visit to Dr. Connor Loftus (GI) at Mayo he came up immediately with 2 possibilities; microscopic colitits and small bowelovergrowth. His diagnosis was cleared by an immediate colonoscopy with 8 biopsies of colon tissue ( that was negative) . So, he started me on doxycycline for small bowel overgrowth. The diarrhea cleared up in 12 hours. I continued the med for 10 days. Note: while waiting for my annual appt. at Mayo I went to local doctors and not one mentioned either of Dr. Onnors’s diagnosis. He is sooo talented.
The MD who is so sweet and talented at Mayo GI is Dr. Connor—-spelled his name wrong. When I saw him in August I had had diarrhea for 3 months. Sorry for above errors and exclusions.
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hodagwi
@hodagwi
@hodagwi
Posts: 62
Joined: Jul 04, 2018
engelee
@engelee
@engelee
Posts: 29
Joined: Oct 06, 2011
I have had 2 ostomies and Hartman pouch for4 years. Previous to that I had lived with a ureterosigmoidostomy resulting from birth defect of bladder extrophy. The ureterosigmoidostomy was an internal ostomy: ureters to sigmoid colon. As young woman was very engaged in horseback riding & other sports. Difficulties were nightly incontinence and screwy electrolytes. Married x2, widowed first time during graduate school. GraduTed with MSN from University of Alabama with specialty in Adult Mental Health and evolved into specialty working with self harm clients.Second marriage 43yrs so far, we had to practice Birth control because I would not be able to carry baby. Everything OK with annual follow-up at Mayo. At 69 had severe diverticulosis and one perforated and I ended up septic x2. Dr. Frank, my Urologist told me time for serious surgery. Mayo had a nurse call me every week the whole summer for prep and support. Met with whole operating team in conference with Dr. Frank and Dr, Heidi Nelson. Surgery resulted in colostomy and uro-conduit and hartman’s pouch. Biggest issue for me post -op was looking at the bags alll over my belly. One thing none of us thought about was that I had never had normal bowel movements or really “understood” the GI system ( normal). It has taken 3-4 yrs to get my life totally reorganized and have a defined purpose for my life. Ostomies truly change your life, how you decide to accept or not accept does make a huge difference. Still a learning process.
REPLY
formydad
@formydad
@formydad
Posts: 87
Joined: Apr 25, 2019
Ok- my dad just got a Urostomy- i have a question- ive tried to look up everywhere and cant find a name for it -since he had bladder cancer earlier this year they took his kidney and ureter out on one side he had chemo then he got pneumonia – so that postponed his surgery but he had it on the 19th this month- they removed his bladder and only used the ureter tube from one kidney left straight out- whats the type of surgery? Is it just called a urostomy since a ilea conduit was not used? I cant find anything on web on it so i was just wondering- also he had some blood come out of his previous to surgery normal urination place while having a bm is this normal? He would not call and ask anyone but i just wanted to know to offer him-peace of mind… thanks in advance for any info!
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Kanaaz Pereira, Connect Moderator
@kanaazpereira
@kanaazpereira
Posts: 2444
Joined: Oct 09, 2016
Hi @formydad,
The procedure might be known as Cutaneous Ureterostomy; I found this information about Urinary Diversion: https://www.niddk.nih.gov/health-information/urologic-diseases/urinary-diversion
I’m hoping @nickkarenl @jimmy2248 and @hodagwi can shed some more light on your dad’s surgery.
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hodagwi
@hodagwi
@hodagwi
Posts: 62
Joined: Jul 04, 2018
I haven't had any surgery yet so not able to add anything, sorry.
Liked by Becky, Volunteer Mentor
formydad
@formydad
@formydad
Posts: 87
Joined: Apr 25, 2019
engelee
@engelee
@engelee
Posts: 29
Joined: Oct 06, 2011
When I saw colostomy, ileostomy, urostomy on Mayo Clinic Digestive Health I was so happy. I have so much I need to know and I can share some things. I then had this feeling that I was needed in the bathroom. I am not sure what can be worst than a full bag/pouch/appliance of liquid and air. I had to clean the front of toilet, the floor, the clamp, my hands, and change my clothes. At least I did not hit my shoes. I know we are to empty our bags when it is a third full, but I have not figured out when the bag is 1/3 full, when I have diarrhea my bag goes from empty to full in a matter of minutes.
My ostomy is the results of radiation I had on my lower abdomen over 30 years ago. It took that long for my sigmoid to die. I now have an ostomy, for life, and a third of my GI track is gone. I have not found anyone, yet, who has had lymphoma, with their sigmoid killed from radiation wearing a bag over their stoma.
Learning to clean and replace your bag, once you get home from the hospital, can be an experience, and one not for sissies. Poop is your friend. It is the food you put in your mouth that the body could not use. When we forget it is food we may become fearful of poop and do not want to look at it or willing to have it get on our hands.
What to eat and what not to eat is my biggest problem. With a third of my GI track gone I have to take lots of meds to make up for what my body cannot get out of the food I eat. I do eat a balanced diet and try new things. The diarrhea I am having now could be a reaction to a new med I am taking, but it could be from the new food I am trying out. I eat mostly veggies. I do have some chicken because I am unable to eat beans. Plain Greek Yogurt is my go-to food. Cheese is one of my other go-to. Ice cream is my only bad food, it takes a month for me to go through a quart. Canned fruit with yogurt is much better than fruit in your yogurt. I live by myself so I do not have to cook meals, any suggestions in what to eat would be helpful.
mlmcg
I have had problems with diarrhea (Siibo) at first doxycycline helped but I worried about decreasing the efficacy af that drug. So I am trying Probiotics. And so fat they are helping . I have also severely limited my sugar intake and increased brown rice and cheese.
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davelt103
@davelt103
@davelt103
Posts: 5
Joined: Dec 09, 2019
Hello, my name is Dave, I have had a colostomy since 2000, I am a quadriplegic and it was one of the best things that I could have ever done. I am no longer tied to the toilet every 2-3 days, it has given me a new sense of freedom. Now with your concerns about diarrhea, yes continue to add rice and cheese to your diet, this is a very good natural way of controlling your consistency! Pepto Bismo, Maylox, or Imodium will also be beneficial to slow and or stop the looseness of your stool. Just a suggestion! Dave
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Kanaaz Pereira, Connect Moderator
@kanaazpereira
@kanaazpereira
Posts: 2444
Joined: Oct 09, 2016
Hi to the group! We’ve been dealing with my son’s UC since 2012. All meds such as Remicade, Humira and Entivio have failed to reduce his symptoms long term. As a result he has been on prednisone ALOT. Now the Drs recommend his large intestine be removed. My son is only 16. Can anyone give us some advice about what to expect, how to handle the ileostomy bag, etc.?
Hi @pmodahl,
I wanted to follow up and ask after your son; how is he doing? Is he managing well with the ileostomy bag?
oceanone
@oceanone
@oceanone
Posts: 25
Joined: Mar 15, 2018
What I would like to know is why do some Surgeon re-attach the colon immediately without the need for a temporary bag after surgery & others prefer to have a temporary bag & do a second surgery to remove the bag & re-attach the colon? I have at least 3 members of my family who have lived at least 15 years with bags & they all had good & active lives so although I am certain that it must require quite an adaptation at first do not despair if you are faced with this situation
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@dragonass
@hanseron Manny thanks for such good ideas. My order to Hollister is my next action.
In Hawaii we say Mahalo for those that help us.
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