ureterosigmoidostomy

Posted by engelee @engelee, Oct 6, 2011

born with bladder exposed on abdomen and solution was to take ureters and internally anastamose them to the sigmoid. There are no portals outside my bodt. This procedure no longer done–much updating) I struggle with metabolic issues, and potential for Cancer which I think may be less because I have had this 59 years and Mayo’s has not seen anybody who has had this set-up for 48 years I go every year to Mayo—I have developed alotof weakness in my thighs and legs generally and alot of fatigue

my daughter was born w/ bladder exstrophy. She now has an augmented bladder and caths thru an abdominal stoma. she is 13 now. I hope you feel better!!
~Melissa

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@engelee how are you doing ? same exactly for me I am 54, BE+ 1966 repair procedure not done today on newborns with BE , and also , please can you help me with fatigue and also I am having issues in my legs right now they become numb easily ( got a diagnotic lately Meralgia Paresthetica). Who do you see at Mayo ?

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Do you have ureterosigmoidostomy ? I had that fo 69 yrs. I had severe restless leg syndrome because nerve pinched ..I had very active career. Then developed sepsis with perforation of diverticuli and Dr. Frank determinedI needed to have my ureterosigmoidostomy taken down and have 2 ostomies. Previously had fatigue from Hemolytic anemia and very low oxygen saturation. Nausea was the worst part all of my life.

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yes I have same as you exactly BE + ureterosigmoidostomy + osteotomy bilateral of illiac . and also fatigue and had anemia( treated) and nerve in my leg pinched. clone copy. who is DR FRank ? at what age your various issues started can you share ? I have no nausea and no restless leg syndrome the opposite my legs become numb when I sit for hours and yes I am very active .

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Dr. Frank-mayo Rochester, minn. I have been with him for years since he was resident. Fabulous Urologist, colonoscopy every yr watching for cancer. Took down uretosig. Metabolic panel always out of whack. Only 2 UTI my whole life, but have become allergic to multiple antibiotics because of lifetime exposure. My leg problem started about your age —watch for diverticulosis—leg problem from multiple(!) adhesions, even made left leg look shorter. No problem now.
You need Academic MD or Mayo. Fatigue not terrible problem until colostomies, but, I’m older too. I would watch potassium, HCT, HGB, low to no salt diet. At 21 had big genital plastic surgery so could have intercourse and confirm I was female—explain later, but part of BE.

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@engelee

Dr. Frank-mayo Rochester, minn. I have been with him for years since he was resident. Fabulous Urologist, colonoscopy every yr watching for cancer. Took down uretosig. Metabolic panel always out of whack. Only 2 UTI my whole life, but have become allergic to multiple antibiotics because of lifetime exposure. My leg problem started about your age —watch for diverticulosis—leg problem from multiple(!) adhesions, even made left leg look shorter. No problem now.
You need Academic MD or Mayo. Fatigue not terrible problem until colostomies, but, I’m older too. I would watch potassium, HCT, HGB, low to no salt diet. At 21 had big genital plastic surgery so could have intercourse and confirm I was female—explain later, but part of BE.

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I am going to be as gentle, but clear as possible. With both feces and urine being eliminated through the rectum, after a period of time, the rectum can easily become very sore and irritated. This can happen with prolonged sitting or just about anything . I had a theory that BE folks have smaller than usual and Dr. Loftus Conor at Mayo confirmed this for me this past August. You probably know you have a separation (3-4 inches) in your pubic bones, thus causing some outward rotation of your hips. Affects how your walking looks—-I don’t care. Your whole perineal area is changed without being evident.

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See above that ended up being written to myself ——duh

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@hoagie6

my daughter was born w/ bladder exstrophy. She now has an augmented bladder and caths thru an abdominal stoma. she is 13 now. I hope you feel better!!
~Melissa

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I’m so glad such new technology and approaches have been developed so she can be much healthier. I would ask you to remember that it’s not just the bladder affected. The whole perineal area may have alterations: seperation of pubic bones, outward rotation of hips, smaller vagina/uterus. The stoma I presume you are working with WOC nurses (wound,ostomy,continence) RNs . Mayo has a whole department of Stoma therapy. Those nurses are the best problem solvers , esp. since they deal with SO many stoma issues. I see them annually when go to Rochester. I thank God she can benefit from newer responses to BE. My MD told me they still do what I had ureterosigmoidostomy for third world countries, because they don’t have stoma equipment available. Thanks for good wishes; I always feel encouraged by them.

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@hoagie6

my daughter was born w/ bladder exstrophy. She now has an augmented bladder and caths thru an abdominal stoma. she is 13 now. I hope you feel better!!
~Melissa

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Go to Mayo? Just an additional thought cleanliness to sterile is spectrum. But I betAs good Mom you know that.

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@engelee

I’m so glad such new technology and approaches have been developed so she can be much healthier. I would ask you to remember that it’s not just the bladder affected. The whole perineal area may have alterations: seperation of pubic bones, outward rotation of hips, smaller vagina/uterus. The stoma I presume you are working with WOC nurses (wound,ostomy,continence) RNs . Mayo has a whole department of Stoma therapy. Those nurses are the best problem solvers , esp. since they deal with SO many stoma issues. I see them annually when go to Rochester. I thank God she can benefit from newer responses to BE. My MD told me they still do what I had ureterosigmoidostomy for third world countries, because they don’t have stoma equipment available. Thanks for good wishes; I always feel encouraged by them.

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@engelee, welcome back the Mayo Clinic Connect. You have so much experience and knowledge to share. You may also be interested in helping others in this discussion:
– Ostomy: Adapting to life after colostomy, ileostomy or urostomy https://connect.mayoclinic.org/discussion/ostomy-adapting-to-life-after-colostomy-ileostomy-or-urostomy/

I agree that the stoma nurses are incredible problem solvers. I'm curious. What cancers are you specifically at higher risk of developing? How does you care team monitor this?

@icornelu here is a link to Dr. Frank's bio https://www.mayoclinic.org/biographies/frank-igor-m-d/bio-20054659
What activities keep you busy?

Liked by icornelu

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@colleenyoung

@engelee, welcome back the Mayo Clinic Connect. You have so much experience and knowledge to share. You may also be interested in helping others in this discussion:
– Ostomy: Adapting to life after colostomy, ileostomy or urostomy https://connect.mayoclinic.org/discussion/ostomy-adapting-to-life-after-colostomy-ileostomy-or-urostomy/

I agree that the stoma nurses are incredible problem solvers. I'm curious. What cancers are you specifically at higher risk of developing? How does you care team monitor this?

@icornelu here is a link to Dr. Frank's bio https://www.mayoclinic.org/biographies/frank-igor-m-d/bio-20054659
What activities keep you busy?

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More than happy to join ostomy. As I understand it the greatest threat was cancer of the colon because of colon exposure to nitrites and nitrites in urine . Having had a colostomy, uro-conduit,and hartmans pouch now I still have areas of high risk for cancer where they used native colon: those areas are uro-conduit where native colon used for conduit part, and hartmans pouch with rectum area left. Dr. Frank has been doing loopogram to watch suspicious are in conduit and next year will scope that area (yikes). Dr. Connor does smoke flex every year for H pouch ( painful) and colonoscopy every other year.. I remain positive about my chance to be cancer free because my Mayo doctors are so vigilant and because I’m getting further away from ureterosigmoidomy.
If I sound knowledgeable it’s because I am a CNS, my doctors educate, and I insist on staying awake enough to watch colonoscopy and ask questions and get answers. AND you would be amazed at how many non-Mayo doctors I have had to explain my condition to because they are not teaching it in medical school. Also, Dr. Loftus. Connor always draws pictures of what he’s talking about. I copy them and take to local doctors.

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@engelee

More than happy to join ostomy. As I understand it the greatest threat was cancer of the colon because of colon exposure to nitrites and nitrites in urine . Having had a colostomy, uro-conduit,and hartmans pouch now I still have areas of high risk for cancer where they used native colon: those areas are uro-conduit where native colon used for conduit part, and hartmans pouch with rectum area left. Dr. Frank has been doing loopogram to watch suspicious are in conduit and next year will scope that area (yikes). Dr. Connor does smoke flex every year for H pouch ( painful) and colonoscopy every other year.. I remain positive about my chance to be cancer free because my Mayo doctors are so vigilant and because I’m getting further away from ureterosigmoidomy.
If I sound knowledgeable it’s because I am a CNS, my doctors educate, and I insist on staying awake enough to watch colonoscopy and ask questions and get answers. AND you would be amazed at how many non-Mayo doctors I have had to explain my condition to because they are not teaching it in medical school. Also, Dr. Loftus. Connor always draws pictures of what he’s talking about. I copy them and take to local doctors.

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I have a # of interests: the first is My Catholicism, see ostomies as gift from God, I volunteer on Ostomy floor at local community hospital
and I belong to Endacott Society for retired KU faculty, I support in many ways new African students to KU (my house is hangout}, love my 2 little dogs, quilt, needlepoint. therapy x2 every week for support with my life, book club, antique guild with UWC.

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@engelee

I have a # of interests: the first is My Catholicism, see ostomies as gift from God, I volunteer on Ostomy floor at local community hospital
and I belong to Endacott Society for retired KU faculty, I support in many ways new African students to KU (my house is hangout}, love my 2 little dogs, quilt, needlepoint. therapy x2 every week for support with my life, book club, antique guild with UWC.

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KU = Kansas University?

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@colleenyoung

@engelee, welcome back the Mayo Clinic Connect. You have so much experience and knowledge to share. You may also be interested in helping others in this discussion:
– Ostomy: Adapting to life after colostomy, ileostomy or urostomy https://connect.mayoclinic.org/discussion/ostomy-adapting-to-life-after-colostomy-ileostomy-or-urostomy/

I agree that the stoma nurses are incredible problem solvers. I'm curious. What cancers are you specifically at higher risk of developing? How does you care team monitor this?

@icornelu here is a link to Dr. Frank's bio https://www.mayoclinic.org/biographies/frank-igor-m-d/bio-20054659
What activities keep you busy?

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I am full time worker !! and a mom of 3 !!

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@engelee

Dr. Frank-mayo Rochester, minn. I have been with him for years since he was resident. Fabulous Urologist, colonoscopy every yr watching for cancer. Took down uretosig. Metabolic panel always out of whack. Only 2 UTI my whole life, but have become allergic to multiple antibiotics because of lifetime exposure. My leg problem started about your age —watch for diverticulosis—leg problem from multiple(!) adhesions, even made left leg look shorter. No problem now.
You need Academic MD or Mayo. Fatigue not terrible problem until colostomies, but, I’m older too. I would watch potassium, HCT, HGB, low to no salt diet. At 21 had big genital plastic surgery so could have intercourse and confirm I was female—explain later, but part of BE.

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same at 16 had vaginoplasty , small for me.

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