Bladder augmentation + mitro was a mistake

[mimin]

Why am I only writing this 10 months post? I dunno, I'm just retarded like that.

Yes, I'm happy that I can now hold 500-600 cc's before leaking (although I still leak relatively often) and that I don't have to get into bed to cath.

BUT:

1. There is so much mucous in my urine that in order to cath, someone has to use a syringe to extract the urine and start the flow or at the very least push really hard on my abdomen. So if I'm going out for more than 4,5,6 hours, I need my caregiver to come with. Thank goodness I have someone 24/7. Still, how would that work if I decide to go back to school or work?

2. I now have bowel accidents at least twice a week which didn't happen before. (How do ppl who only have help in the mornings and evenings deal with these? :thinking:) And when I say accidents, I mean full-on, where did that come from?, I better sit on the toilet for an hour accidents.

3. I had to add sodium bicarbonate pills to my drug cocktail b/c the BE (beryllium? I don't know) in my blood gases was low due to the augmentation I guess.

Not to mention the plethora of scars it's left on my once wasboard tummy. :(

To sum it up, no independence w/cathing, afraid to go out in case I shit myself and even lower self esteem. Ugh, I hate my life!

[sjean423]

No advice here, just sorry to hear this didn't work out well for you. :o

[mimin]

Thanks sjean.

[Emi2]

I kinda regret my mitro/aug as well. Same deal with the accidents. As far as the mucous, have you tried having your bladder irrigated every morning? Maybe that would reduce the mucous enough to cath independently all day?

[Kristi]

I also recommend irrigating with some saline possibly daily for awhile. Instead of extracting with a syringe push some saline in to loosen the mucous up. Could it possibly be leaking because you have too much mucous build up?

I have had my augmentation since 2005 (before that it was foley for 4 years and SP for 6) and I don't regret the decision. I flush daily and I don't have much mucous and I don't have leaks and I haven't had a bladder infection since 2003. I'm not on any bladder meds either. I do wake myself up in the middle of the night to cath as I just don't see myself going the 8 hours the doc says I can get. I drink way too much water for that. I LOVE being bag free!!!

No accidents, but I don't know if it makes much of a difference in how docs do the procedure. My appendix were not used. They were taken out and my small intenstine was used for the augmentation. My bowels actually got better after having the surgery.

I hope you can figure out what's causing the leaks. If you want some instructions on flushing the mucous let me know.

[Lorrie]

Wow. Mimin, thank you for your honesty. This is my worst fear. I have lived independently with minimal help for years. The indwelling is horrid but I can't imagine what I'd do if I need help every 4-6 hours.
I will likely still go forward as long as I'm eligible but my fears are seemingly your reality at the moment.
I have heard a few very positive first hand experiences. I can only hope your issues resolve and you become glad you did go forth.
Best to you!

[Eileen]

So sorry Mimi. What a lot to go through and then be disappointed by the results.

[woman from Europe]

My friend has nearly the same trouble that you have, she is not SCI and she has just been in the hospital and I asked if she had any advice for you.

That is really bad that it happened to you too. I feel so bad because I am the one who told her to do the mitro instead of a normal stoma with bag, because here they only do that normally. First time I have been reading bad things happens like that on CC

[Le Type Français]

I'm so sorry, Mimi. :(

[rdf]

I'm sorry it's not working out mimi. I hope something can be done to help you out.

[wtf]

Thanks Mimin for sharing your experience, I've thought about getting this operation and the pro's definitely outweigh the cons but I still can't get myself to do it. If I had problems (uti's, more independance) I would probably lean more to it but since I don't I can't justify it at the time. I think when I'm so much older (70's) I'll get this and a colostomy for convenience. I'm sorry you're regretting your decision, maybe it will get better, I hope so.

[Miss September]

Hey Mimi

Im so sorry you are still having rough times with this.

Like a few others on here have said, try irrigating with saline daily. Thats what the uro told me would be needed if I considered having this surgery (am too much of a chicken so far. I read your whole post about you op over and over trying to talk myself into it!).

I havn't got much other useful advice. Just wanted to say You are totally not retarded for waiting 10 months to reach this conclusion and post on it. It is natural to wait and expect things will get better with time. Hopefully they still will for you!

Lots of love and positive thoughts. xoxoxoxoxooxxoxo

[Miss September]

So I was thinking more abot what Mimi has experienced, and realised I have read various medical articles in relation to some of these things and whether/ how bladder augmentation should be done. I realise, sorry mimi, that this info is probably more use before surgery but possibly worth discussing.

1. Scars: Ok so drs may not thinks this is so important, but it can have a huge impact on young sci women like mimi and lots of us. I have read that it is possible to do an augmentation and mitro laparoscopically. this leaves just 2 tiny incisions,one in the belly button and the other on the abdomen.The literature also says this method improves healing time and pain. Here's some links
http://books.google.com.au/books?id=nU5WGRBeBBQC&pg=PA302&lpg=PA302&dq=bladder+augmentation+laPEROSCOPIC&source=web&ots=hhK1hJ7jzq&sig=hwmmqunXbFbqin9NU3-GO8_6ahE&hl=en&sa=X&oi=book_result&resnum=9&ct=result

http://www.liebertonline.com/doi/abs/10.1089/10926410050167404

But then I found this article which says laporascopic methods are tecnically arduous and may not have long lasting results.
http://www.surgeryencyclopedia.com/A-Ce/Bladder-Augmentation.html

Dr Wise Young,sci nurse, have anyone of you had any experience in relation to this?

2. Mucous. A clinical study is underway in sci patiebts where the flap used to augment the bladder is grown from the patients own cells, rather than using an bowel/stomach segment.The main benefit, of course is that it does not produce mucous and possibly less uti's. It is the patients own tissue so less issues with rejection.There is a thread about it on here somewhere.Phase one of the trial was on patients with spina bifida. They started phase II- sci - in 2007.Does anyone know how this is going? On the clinical trial website it says the study is estimated to end in dec 2009.

If it is successful, when would we be likely to be able to access the surgery?
Some links
http://clinicaltrials.gov/ct2/show/NCT00512148
http://www.accessibility.com.au/news/studying-regenerated-neobladder-to-help-spinal-cord-injury-patients

Look forward to any info people have to offer

xoxxoxo

[Mona~on~wheels]

Sorry Mimi, it makes since to wait and make sure
it doesn't get better before saying anything.
I'm hopeful the advice others have gave helps you out alot!
Working on one problem at a time you get them solved.
I only have morning & night help. That's why I have to have sp catheter.
Good luck sweetie!

[adi chicago]

Sorry to hear mimin ....I am afraid of surgeries and side effects like hell.Some help us some not.Good luck and be strong.

[mimin]

Thank you for all the replies.

I do flush with saline a few times a day... doesn't make a difference. Everything has its disadvantages. When I had the sp cath after the surgery, I complained cause it smelled and I was always afraid it would pull off and urethral cathing sucked cause I had to lie down. So which one is the best? I don't know.

Miss September, I think the info you posted was great. I hope to hear good results from those trials. And thx for your kind words :)

wtf, by the time you're 70, we'll have a cure!!!

I know that the majority of ppl who did this surgery were very happy w/the results so I don't want to dissuade anyone from doing it.

Thx again peeps. It was good to let it out!

[mimin]

Also, Emi, I've been leaning toward colostomy. I know your hubby is against which substantiates my fears that a colostomy would be a big turn-off. Maybe when I'm 70...

Kristi, it was also my small intestine that was used. I'm not sure where my appendix is...in/out?

[jessie.gray]

Also, Emi, I've been leaning toward colostomy. I know your hubby is against which substantiates my fears that a colostomy would be a big turn-off. Maybe when I'm 70...

Kristi, it was also my small intestine that was used. I'm not sure where my appendix is...in/out?

Your appendix is on your large intestine. Sorry you have been having so much trouble since your augmentation. My doc and I decided against the augmentation and wrote a very detailed letter to my insurance so they'd cover the Botox injections. Haven't got them done yet (will have it done of Dec. 16), but I am hopeful that they will help. I regretted my mitrofanoff operation, because I've had such a hard time with urine leaking out of my belly button all the time, despite being on 3 different bladder medicines (Ditropan, Enablex and Imiparine), cathing 10 times a day, and irrigating once a day.

As far as a colostomy, this is the one surgery I was happy about. Sure, I needed to have to done because 1/2 of my colon stoped working and was starting to tear, but it has freed me from constipation, bowel programs that don't work well, and the intestinal infections. I had my entire colon taken out and have an ileostomy. I still have 1 1/2 inches of rectum left, which I plan on discussing removal of due to diversion colitis. Plus, its not that big of deal to have a bag on your belly 24/7. Most of the time, I forget its even there until it fills up 1/3 and starts to feel heavy.

Jessie

[doingtimeonmyass]

Sorry to hear you're having problems mimin. :(

[Wise Young]

So I was thinking more abot what Mimi has experienced, and realised I have read various medical articles in relation to some of these things and whether/ how bladder augmentation should be done. I realise, sorry mimi, that this info is probably more use before surgery but possibly worth discussing.

1. Scars: Ok so drs may not thinks this is so important, but it can have a huge impact on young sci women like mimi and lots of us. I have read that it is possible to do an augmentation and mitro laparoscopically. this leaves just 2 tiny incisions,one in the belly button and the other on the abdomen.The literature also says this method improves healing time and pain. Here's some links
http://books.google.com.au/books?id=nU5WGRBeBBQC&pg=PA302&lpg=PA302&dq=bladder+augmentation+laPEROSCOPIC&source=web&ots=hhK1hJ7jzq&sig=hwmmqunXbFbqin9NU3-GO8_6ahE&hl=en&sa=X&oi=book_result&resnum=9&ct=result

http://www.liebertonline.com/doi/abs/10.1089/10926410050167404

But then I found this article which says laporascopic methods are tecnically arduous and may not have long lasting results.
http://www.surgeryencyclopedia.com/A-Ce/Bladder-Augmentation.html

Dr Wise Young,sci nurse, have anyone of you had any experience in relation to this?

2. Mucous. A clinical study is underway in sci patiebts where the flap used to augment the bladder is grown from the patients own cells, rather than using an bowel/stomach segment.The main benefit, of course is that it does not produce mucous and possibly less uti's. It is the patients own tissue so less issues with rejection.There is a thread about it on here somewhere.Phase one of the trial was on patients with spina bifida. They started phase II- sci - in 2007.Does anyone know how this is going? On the clinical trial website it says the study is estimated to end in dec 2009.

If it is successful, when would we be likely to be able to access the surgery?
Some links
http://clinicaltrials.gov/ct2/show/NCT00512148
http://www.accessibility.com.au/news/studying-regenerated-neobladder-to-help-spinal-cord-injury-patients

Look forward to any info people have to offer

xoxxoxo

Miss September and Jessie,

Thank you for your informative discussion. The two approaches that you discuss indeed have major advantages. Laparascopic approaches would reduce the scar but I doubt that augmentation surgery can be done laparoscopically. It would be sort of like sewing a dress through a keyhole. There is of course much interest in using other tissue beside the colon and small intestine, both of which secrete mucus and other materials that tend to clog up the catheterization. In the coming years, other materials will replace the intestine/colon.

Regarding the leakage that occurs when no augmentation is done, one possible approach that may be useful is intravesicular instillation of ditropan, which may reduce the bladder spasms more than oral doses can (Source (http://sci.rutgers.edu/forum/showthread.php?t=9226)). While there is some skepticism about the use of intravescular ditropan, some recently studies suggest that most of the ditropan is absorbed and sequested by the bladder without going systemically http://cat.inist.fr/?aModele=afficheN&cpsidt=14094779. Here is a detailed and conservative discussion of the many pros and cons of the various approaches http://books.google.com.hk/books?id=1sWk1GYCvKoC&pg=RA1-PA1631&lpg=RA1-PA1631&dq=intravesicular+ditropan&source=web&ots=E2L9YTt9-I&sig=TZv8WzrpJQXNngZwCOlS7KDyUUc&hl=en&sa=X&oi=book_result&resnum=9&ct=result#PRA1-PA1634,M1. All the approaches have their problems, including capsaicin.

Several years ago, Anthony Atala at Wake Forest University announced that he successfully created a laboratory-grown bladder that he then implanted in a human http://en.wikipedia.org/wiki/Artificial_bladder. Previously, clinicians had fashioned "artificial" bladders from intestines or other organ walls. Unfortunately, intestines tend to absorb fluids and also secrete mucus and other stuff. The new bladder produced by Atala used actual bladder cells from the patient to make the newly grown bladder http://news.bbc.co.uk/2/hi/health/4871540.stm. That was of course 2 years ago. He published a review this year:

Atala A (2008). Bioengineered tissues for urogenital repair in children. Pediatr Res. 63: 569-75. Institute for Regenerative Medicine and Department of Urology, Wake Forest University School of Medicine, Winston-Salem, NC 27157, USA. aatala@wfubmc.edu. The most common congenital abnormalities involve the genitourinary system. These include hypospadias, in which the urethral opening develops in an improper position, and bladder exstrophy, in which the bladder develops on the outer surface of the abdomen. Children with these conditions will require immediate and multiple reconstructive surgeries. Currently, reconstruction may be performed with native nonurologic tissues (skin, gastrointestinal segments, or mucosa), homologous tissues from a donor (cadaver or living donor kidney), heterologous tissues or substances (bovine collagen), or artificial materials (silicone, polyurethane, teflon). However, these materials often lead to complications after reconstruction, either because the implanted tissue is rejected, or because inherently different functional parameters cause a mismatch in the system. For example, replacement of bladder tissue with gastrointestinal segments can be problematic due to the opposite ways in which these two tissues handle solutes-urologic tissue normally excretes material, and gastrointestinal tissue generally absorbs the same materials. This mismatched state can lead to metabolic complications as well as infection and other issues. The replacement of lost or deficient urologic tissues with functionally equivalent ones would improve the outcome of reconstructive surgery in the genitourinary system. This goal may soon be attainable with the use of tissue engineering techniques.

I don't know if it is available for adults.


Wise.

[quad79]

I'm so sorry Mimi.:(

[mimin]

Thx Shannon. I'm glad there's new research to solve these problems

[mimin]

In bed now after another bowel accident - one less pair of underwear in my closet. I'm at my wit's end and not just cause I like the way that sounds.

[Lorrie]

Mimin, what does your surgeon say about these problems?

[Miss September]

oh mimin.I'm so sorry to hear that. How frustrating when your body just wont co -operate. Like Lorrie asked,what has your surgeon suggested?

fingers crossed for you

[woman from Europe]

My friend eat Imodium all the time and she said the loose stool is coming from the acid blood. They don't know why she has the acid blood but have to told her she maybe had something wrong with the kidney before and it did not show up before she took the operation.

[rdf]

You might have IBS mimi. I know some people here have solved this by taking Fibercon. It's supposed to affect both constipation and diarrhea, evening it out so you have neither extreme. Maybe your problem is not related to your mitrofanoff/augmentation. Hope you figure it out soon, it must be very hard to deal with. Wish I knew more to help out.

[Evonne]

Oh Mimi i really feel for you. U are due for a break soon. What has your Dr. said so far about all the problems u now have? What options is he now able to give u to get u some relief?? Hopin to hear u feel better soon

Evonne

[Lorrie]

Also, make sure you have c-dificil ruled out concerning bowels.
For mucous blockage, perhaps larger caths, drink more h2o?
For leaking maybe collagen injections, botox, detrol.... These are just guesses from reading other peoples issues.
There has to be some solutions to these problems.
Don't get too discouraged, mimin.
If/when, I have this surgery, remind me too! :p

[mimin]

Mimin, what does your surgeon say about these problems?

Truth is, I didn't ask him b/c I didn't think there was a solution but it doesn't hurt to ask, right? I'll get on it.

wfe, I don't know if it's b/c of acidic blood but I did have to start taking sodium bicarbonate post-op. Did your friend get her blood gases checked?

rdf, I really hope it's not ibs. From what I read though, this isn't diarrhea which would be continuous over a day or so.

Lorrie, I just switched from a 10 fr to a 12fr cath. I know it's small but it's hard enough to get in especially when I'm sitting. I think I've got the leaking under control. My winter soup&tea diet means I have to cath more often.

Thx everyone for the advice and support!

[woman from Europe]

They are checking her blood gases every month. And they have said if the blood continuing staying acid, she has to make a new operation and make a normal stomy because it can destroy her kidneys. So she is eating sodium bicarbonate like crazy because that is the last thing she wants.

I know it is a diett she has to follow(she doesn't following it all the time) but I think if you go into pages about I.C you may find the diett. Just now she is in Egypt for holidays so I can't ask her. You are not the only with an operation that was unsuccessful.

My friend has taken away the bladder and the reservoir is in the small in intestine. A few weeks ago she had so much mocus that she had to go to hospital and empty her with a 18 Fr catheter. And I know she is cleaning her reservoir more then once in a day.

[Chris Chappell]

Good luck mimi, hope you're feeling better. Sorry for all the troubles. Hang in there..:)

[Theophania]

i love my mitro. i too need to use a syringe to extract the urine, but only in bed, and i can do it on my own. i dont have any bowel issues.

i'm sorry it didnt work :( you can always go back to what you were doing before and let the stoma close, but that wont get rid of your mucus problem though.

and i too irrigate with saline every night.

[Lorrie]

Does everyone who has had the augmentation along with the mitrofanoff have to irrigate or "extract urine" daily?

[mimin]

i love my mitro. i too need to use a syringe to extract the urine, but only in bed, and i can do it on my own. i dont have any bowel issues.

i'm sorry it didnt work :( you can always go back to what you were doing before and let the stoma close, but that wont get rid of your mucus problem though.

and i too irrigate with saline every night.

Just wondering, where is your stoma? When you cath in bed, do you sit up or lie down? Thx.

[alissa]

Hey,

i've always used a 14fr catheter (13yrs.), and I'm usually able to get a reasonable flow going. I couldn't imagine trying to move any amount of mucous through anything smaller. With a lot of lube, do you think you could experiment with a large size?

Peace

[alissa]

Does everyone who has had the augmentation along with the mitrofanoff have to irrigate or "extract urine" daily?

I rarely have to irrigate - I only do it when I feel a UTI coming on.

[alissa]

Just wondering, where is your stoma? When you cath in bed, do you sit up or lie down? Thx.

Just to add-
My stoma's on my lower right abdomen. I cath indepedently anywhere. In bed, I'm laying on my side (either side, but left is easier access). I have a cath connected to a leg bag.

[mimin]

Just to add-
My stoma's on my lower right abdomen. I cath indepedently anywhere. In bed, I'm laying on my side (either side, but left is easier access). I have a cath connected to a leg bag.

Mine's also lower right so the catheter goes in sideways. Can I ask what your hand function is like? I'll try to get a few 14fr caths to try out.

[alissa]

I function pretty much as a "typical" c5/6 - wrist extensors, no flexors, no real finger movement. My fingers are pretty loose, not curled, and no real tenodesis. I could try to get a photo for you of how I hold a cath for insertion.

[Theophania]

my stoma is in my belly button, and i sit up in bed to cath.

[mimin]

I function pretty much as a "typical" c5/6 - wrist extensors, no flexors, no real finger movement. My fingers are pretty loose, not curled, and no real tenodesis. I could try to get a photo for you of how I hold a cath for insertion.

That would be very helpful, thank you!!

[jessie.gray]

Does everyone who has had the augmentation along with the mitrofanoff have to irrigate or "extract urine" daily?
My uro told me that it all depends on what material they used for the augmentation/mitro and if you have a problem with infections as to whether you irrigate everyday.

I haven't had an augmentation, but do have a mitrofanoff and irrigate it about once every other day just to get rid of the excess mucus it produces. I just use a catheter to empty my bladder, then draw up 2 oz. of sterile saline into a "catheter-tip syringe" (BD makes these and they can be covered by insurance if you have an Rx), hook the catheter tip to the end of my catheter and inject the saline in my bladder. I wait a second, then use the syringe to draw the saline back out of my bladder (you can also just let it drain out through the catheter, but its just easier for me to draw it out with the syringe).

[alissa]

here are a couple of photos - let me know if you need more detail or video

[semajh7]

Hi mimi. I am so sorry to hear about you current situation. I too am paralyzed with a t11-t12 spinal cord injury. Even though I dont have a answer for your ailment I do have some info that maybe helpful. There is currently a procedure available that allows us to urinate at will just by scratching our abdomens. I dont know all the details but i will get back to you when i learn more. This seems like something that would be very helpful to you. Take care.

[Miss September]

semajh7, are you talking about an artificial urinary sphincter?

[Miss September]

Hey Mimi

Just came across a forum where parents of kids with spina bifida where they are talking about using tampons to prevent bowel accidents. it says the brand is coloplast.Parhaps this might help you with your current problems?


http://www.sbhao.on.ca/forum/display_topic_threads.asp?ForumID=6&TopicID=170&ReturnPage=&PagePosition=1&ThreadPage=1

[4wheeler]

Hi Mimin,
I had this same procedure done about 2 and a half years ago, and the first 8 months was like a living hell, to be blunt. My stoma leaked, my bowels were a little off, I couldn't work it myself....grrrrr.

I got deflux injections in the stoma to stop the leaking, and everything else kinda cleared up on it's own.

Have you been checked for c-diff. It is common after hospital stays, especially with bowel surgeries.

Also, have you had a urine culture done because weird as it sounds, a uti can wreak havoc on your bowels, and I know that when I'm getting large amounts of mucous now it means uti.

A final thought is that they took the augment from the wrong part of your bowel....u'd have to ask your Dr.

Anyway, hope it works out for you. Sux to get a screwed up end result.

Lynne

[woman from Europe]

Mimi, I know Coloplast doesn't sell those tampons in US, but they sell them here and in UK at least. If you need some to try, I have and I do not use them, so I can send mine to you. They are free for me so I don't want any money.

[summergirl89]

hi. i had this surgery about 14 years ago and like you that is when i started having bowel accidents. my urologist said it was because i drank more fluids after the surgery than before. (before i leaked all the time so i wouldnt even drink 8 oz of anything per day). after surgery i drank a lot more, therefore more water went into my intestines. That was the reasoning i was given. I have also heard there is a little think somewhere in there that controls how much water is let into your intestions and if that is nicked at surgery then it could also allow more water in the intestines. The nurses can maybe explain that in more detail. as far as the mucus-i find it best to sometimes cath lying down and sometimes sitting up. this allows you to get the mucus in different areas-bottom of bladder/top etc. mine is often not that bad and then sometimes i get A LOT but if i push on my stomach or just take the cath tube out and reinsert it a few times it usually helps-but in doing that you just have to be careful b/c that is not the most sterile way of doing things. :)

[quadvet]

Hey Mimi, really sorry how this turned out. I hope, like others have said, the mucus and bowel problems decrease over time. I get a lot of mucus with my urostomy for the same reason; the piece of intestine used in the procedure continues to produce and slough off its inner lining. No way the amount of material I get would pass through a catheter.

All the best, I hope it gets better.

[leschinsky]

oh mimi I'm sorry you're struggling so. Ninety % of the time I don't have problems cathing, luckily the problem occurs mostly when I'm lying down -when I have help. But sometimes I have to wash out the cath a few times because the goo my appendix produces gets stuck in the cath. And every couple months there's so much goo that after 2 hours of trying to cath I have to call for someone to help cath the old fashioned way. I don't know how so much goo can be in my stoma. I'm so thankfull I didn't have the aug because if I had the added mucous from my bladder I might be sol! I have a check up tomorrow with my doc but he'll probably have no advice for me because he thought flushing the cath would work, not with my thick goo.

Hang in there, *hugs*

I'm glad to read of the recent advances I would love to be off the 45mg of oxybutin I take - both orally and intravescularly.

[mimin]

Very grateful for the responses, just too tired and unfocused to follow up right now. Will get back to this sometime...

[doingtimeonmyass]

I hope your days get better Mimi.