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Mitrofanoff scheduled for April and I've never been more terrified

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  • Mitrofanoff scheduled for April and I've never been more terrified

    I am c6 quadriplegic since May 2010. I currently have a suprapubic catheter or don't really want the independence of being able to cast on my own without having to worry about what clothes I'm wearing. I've also been told that having a suprapubic catheter or can cause cancer and that cathing with my trough and of I currently have a suprapubic catheter or don't really want the independence of being able to cast on my own without having to worry about what clothes I'm wearing. I've also been told that having a suprapubic catheter or can cause cancer and that cathing through mitrofanoff will lessen that risk.

    I've been a quad it for almost 7 years and have not had a single serious issue. No pressure sores, no infections, no getting sick, no broken bones. I came on this iMessage board to read up on other people's experiences and all it did was scare me even more. Some people on here say that all of their health issues now are related to that while others say they constantly have bowel issues even years later. My doctor suggested putting a fling in to prevent me from leaking from the bottom, but now I'm scared I won't be able to cath one night and my bladder is going to explode. Apparently with the sling you can't cast from your urethra so really there's no second option if I get clogged

    I'm also worried about being able to press on my stomach when I want to. I do it all the time because my blood pressure gets low so it just feels really good. Well I at least be able to do that when at all heals?

    My daughters second birthday is three weeks after the surgery. Am I going to even be able to participate? Like, how out for the count and I going to be?

    I also take back the fan and gabapentin which I just learned I will not be able to take around my surgery. Will they help me with the pain?

    I'm begging for some help and advice that I can make the best decision for myself
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  • #2
    My daughter's experience with hers has been very positive. We cathed from below for two years before getting the surgery done. My daughter wanted nothing to do with a leg bag after her injury at 12. When she started high school she wanted the independence of not being tied to transfers for cathing. Seriously, we did that for two years. In high school she never found a cath that she could completely do independently so most family and some friends were trained in cathing form her Mitrofanoff. She is now in college and found the cath that works for her the best and is completely independent. She can cath herself in bed or even in the van if she feels like it ha! (We cath on plane trips too but I usually handle that.)

    Her doctor used her appendix as the conduit and the opening is in her belly button. Her bladder was big and round so she did not require a bladder augmentation which is a longer recovery. Recovery was three weeks at home with a foley, a trip to the doctor to take that out and to train us how to cath. This was hands down one of the best decisions we made together.

    We haven't had many downsides. I don't know if we lucked out with our surgeon or what. A couple times a year it is a little more difficult to get the cath in. Mucus buildup or just a poor entry seem to be the main culprits. If it is really tough we just leave the cath in for a day and cap/drain as needed. Repeat next day and that is enough to create a nice smooth entry again.

    Feel free to PM me with questions or if you would like my daughter's contact info. She is always very happy to talk with any female quads and she follows you on social media.

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    • #3
      Just be prepared for needing a lot of help. In my opinion, you'll want to have personal help in your room at the hospital as we all know that hospital staff can be less than accommodating with help in a timely manner. You'll need to be turned as much as necessary. Make sure you have the best thing possible for preventing pressure sores. I laid in bed for close to 10 days straight as all of the tubes coming out of you made it impossible to do otherwise.

      Likewise, you will need extra help at home for a while don't make any plans for at least a month. You'll need to catheterize fairly frequently at first as you can allow large volumes to accumulate that might stress the suture lines of the bladder where it is modified. Augmentation necessitates quite a bit of reconstructive surgery. A Mitrofanoff only probably have a faster healing time as it leaves the bowel alone (minus the appendix) does not involve opening up the bladder circumferentially to attach a section of intestine.

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      • #4
        This is a procedure that seems to be either wildly successful for people or one that they wish they could undo. I would ask your surgeon a lot of questions - and include some of the ones that you asked us. Each physician has his/her own process for recovery and you need to know what they recommend. Also, how much help do you now require? I would certainly not argue with the fact that you will need assistance at home (and it probably doesn't hurt in the hospital either, even if only as an advocate). Whether you have a spinal cord injury or not, you would need assistance for awhile.

        I am curious though, why now for the procedure? Are you having problems with your supra pubic? If there is no rush or problem, I would certainly encourage you to seek a second opinion. While having a foreign body in your bladder does increase your chances of bladder cancer, it is not something that you need to rush into to remove, in my opinion., at this point. o you have a sci doc? If so, have you spoken with him/her?

        ckf
        The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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        • #5
          Additionally, you need to find out whether a simple mitrofanoff, which provides a conduit to the bladder will suffice or whether your bladder is simply too small, in which case you will go through major abdominal surgery to potentially have future leakage issues. Urodynamics would help answer that question. The augmentation, which would involve removal of part of the bowel, adds additional complexity to the operation, but which would avoid a potential second operation later on. And, doing that operation later on, should you need it for additional volume, would not be so easy as the conduit previously constructed would have to be detached and hopefully reused.

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          • #6
            I will require an augmentation and I hear that is the part that can cause the most problems. My daughter's birthday is three weeks later and I was hoping to go to the science March which is two weeks after surgery. I'm curious why I can't make plans because all I will be doing is sitting in my wheelchair and pushing around. What are some of the complications others have had? Why would people wish they had never done it? I want the surgery now for a couple reasons including the fact that I'm afraid of cancer. It's also a little superficial because I don't want a tube hanging out of me all the time. I'd be much more independent because I have a hard time getting the bag out of my leg with anything that isn't workout pants. But yea. I'm scared.
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            • #7
              Oh hey, here is a blog of a para getting the procedure done with an augmentation. I got the link from SPINALpedia as it passed on one of my social feeds. BTW, blogger is an RN.

              http://www.mobilewomen.org/2017/02/m...trofanoff.html

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              • #8
                If you are having part of you intestine place on your bladder, you will most likely still have drains in at 3 weeks and be feeling pretty sore. Not sure why you can't take Gabapentin? We don't stop that in our patients-!? Chance of cancer- with SPTube- about 8-10% after 8 years-pretty rare. The mitranoff can leak also. And you can get cancer in the part of your intestine put on bladder also!
                You must follow the exact instructions of doctor and slowly build up your capacity. Once they say you can cath you will be doing every 2 hours for a week , then very 3 hours , then every 4 hours. You must irrigate catheter as with bowel you will have mucous for the first year atleast.
                It is a major, major surgery!
                CWO
                The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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                • #9
                  I did bladder aug back in 2001. It was not easy. As an active para at that time (in my mid 30's) I found it challenging. You will wake up with a tube in your nose that will drain the fluid from your stomach. You won't be able to eat for a few days (for me it was 5), until they remove the tube (that was a whole lot of fun) then you will slowly begin to eat liquid diet, broth, jell-0, then if you have good bowel sounds you can graduate to better food. you will also be on a crap load of antibiotics via your IV and possibly oral. Be sure to take a really good pro-biotic. I have been taking Florastor ever since I got MRSA in 2014 (which is what worsened the pressure sore), and I still take it to keep my bowels regular.

                  I spent about 10 days in the hospital, and took at total of 6 weeks off of work. I did develop some kind of severe yeast infection from the anti biotics that sent me back to the hospital, so that was a setback, but once that was straightened out I began to feel better. By the 5th week off of work, I drove myself to go vote and to have lunch with some co-workers.

                  In my early 50's I began having accidents. I complained to my urologist, who couldn't really explain, and for some reason didn't want to do another urodynamics. I began to really have to watch how much I drank. Then I got a pressure sore, and all bets were off. After spending about 2 years in bed, the sore wouldn't close so I had surgery last April. Things snow balled, and once I recovered severe arthritis in my shoulders, probably as a result of not using them while in bed, made cathing difficult as well.

                  I decided to eliminate as many transfers as possible, so I opted for the suprapubic catheter back in November. Things are better for me now. I no longer have to worry about transferring to my commode chair, except for very rare cases of a bowel accident when cleaning up in bed would be worse. I don't use my tub anymore either. I wash up in my bathroom sink and take wash cloth baths and clean my privates in bed after my bowel routine. Amazingly I don't smell too bad!!! LOL

                  Don't worry about your daughter's birthday. You are having major, major surgery, and your daughter will understand if you have to put celebrations and trips to museums off for a few days. Don't rush yourself, and let your body decide how much you will do. If you are tired, do not push yourself.

                  I wish you lots of luck. I hope your procedure goes well and you recovery quickly.

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                  • #10
                    "If it isn't broke don't fix it" and it sounds as if things have gone swimmingly for you over the last seven years so why risk screwing things up now?

                    On top of that you sound scared witless of the whole procedure and with good reason, any surgery has the potential to go horribly wrong.

                    If you have any doubts after asking the professionals and other SCIs that have had it done then leave well alone!

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                    • #11
                      My best friend is quadriplegic for 29yrs. She had a supra for most of that time and her bladder started to degrade at the same time mine did. Surgeons put in a new supra, gave her botox to bladder ... and just this week she is able to go 3hrs with just clamping as before.

                      I'd hold off on the mitro as a last resort.
                      Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

                      T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

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                      • #12
                        Originally posted by SCI-Nurse View Post
                        If you are having part of you intestine place on your bladder, you will most likely still have drains in at 3 weeks and be feeling pretty sore. Not sure why you can't take Gabapentin? We don't stop that in our patients-!? Chance of cancer- with SPTube- about 8-10% after 8 years-pretty rare. The mitranoff can leak also. And you can get cancer in the part of your intestine put on bladder also!
                        You must follow the exact instructions of doctor and slowly build up your capacity. Once they say you can cath you will be doing every 2 hours for a week , then very 3 hours , then every 4 hours. You must irrigate catheter as with bowel you will have mucous for the first year atleast.
                        It is a major, major surgery!
                        CWO
                        10% after 8 years is worse than I thought! I got the sp when I was 25 and am now 31. What about when I'm 50? I feel like it's inevitable. Ugh I hate SCI. Myurologist at UNC said the cancer risk associated with mitro is much less
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                        • #13
                          No, I have never seen it except in one person- higher risk for smokers.
                          But bladder aug is good- it is just a major post op recovery and the irrigation of bladder d/t mucuous. but after it has expanded and everything good it will be worth it.
                          CWO
                          The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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                          • #14
                            This is very preliminary stuff but points to a non-invasive method for bladder augmentation in SCIs with NGO:
                            http://www.tandfonline.com/doi/abs/1...nalCode=yscm20
                            T3 complete since Sept 2015.

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                            • #15
                              Thanks mize
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