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?
Liked by Karen Nick, John, Volunteer Mentor, Kanaaz Pereira, Connect Moderator, thull ... see all
@mimcg…Thanks very. helpfull. Maybe my expectations for more days is unrealistic. I’ll try yor suggestions.
Liked by Becky, Volunteer Mentor
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.
Liked by Becky, Volunteer Mentor
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.
Liked by Becky, Volunteer Mentor
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.
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!
Liked by Becky, Volunteer Mentor
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.
Liked by Becky, Volunteer Mentor
I haven't had any surgery yet so not able to add anything, sorry.
Liked by Becky, Volunteer Mentor
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.
Liked by Rosemary, Volunteer Mentor
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
Liked by Rosemary, Volunteer Mentor, Colleen Young, Connect Director, Kanaaz Pereira, Connect Moderator
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
Liked by Colleen Young, Connect Director
@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.
Liked by Kanaaz Pereira, Connect Moderator, Becky, Volunteer Mentor