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12 days post mitrofanoff and augmentation surgery

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    12 days post mitrofanoff and augmentation surgery

    The surgery was very successful, but the recovery is incredibly hard so far. I have a supra public for a month until the mitofanoff heals. As I feared, the bowel program is both painful and crazy because my intestines were used and most the nurses don't really understand neurogenic bowel and bladder. I also got an infection at the suprabubic entry point which took a while to figure out where the infection was, so then of course mega antibiotics then of course rashes and thrush and diarrhea - oh my!

    ive had lots of pain too, but am starting to feel better now and was able to get admitted to a spinal cord rehab center at the same hospital for a week before I go home so am getting OT and PT therapy by people who "get it" much better.

    Well, I'm tired, God bless.
    http://www.laughwithmecrywithme.com
    my website & blog

    #2
    Ugh ... my worst fears realized. I've heard of some having diarrhea up to a year. Sounds like it's settling though - hope so!
    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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      #3
      Starting to get my strength back and transferring myself, standing frame a little and misc exercise with PT and OT. They are doing a great job here and I'm beginning to feel human again. I know when it all heals it will be so worth it. The worst is past.
      http://www.laughwithmecrywithme.com
      my website & blog

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        #4
        Good to hear things are turning around. My daughter didn't need the augmentation so had a shorter recovery. Four years later I can say that her UTI's dropped to almost zero and my gosh what a convenience!

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          #5
          Darlagee I saw earlier posts discussing incontinence and a bladder sling surgery that didn't solve the problem. Did you stop the leaking before or was the augmentation anything that will help. I'm having major problems that sound similar to yours and wonder what your solution was. I hope you check this thread....
          I have a hard time deciphering the fine line between boredom and
          hunger.

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            #6
            I too had augmentation along with a continent stoma in 2009. My recovery was difficult but the end result has been worth it. Because they used a segment of intestine I too had very loose stool and still do occasionally. Today I can say that I have had no uti's, incontinence or major problems. I feel so much more able bodied. It took awhile but I'm so happy that I had this done. Just had my yearly checkup with the urologist and he is very happy also.

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              #7
              Thanks ima. I think I'm heading in that direction.
              I have a hard time deciphering the fine line between boredom and
              hunger.

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                #8
                Glad to hear that things are settling down.
                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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                  #9
                  UGH! Its been hard. After my last post here my suprapubic pulled out partly I think into the abdominal cavity hanging by a stitch and a thread of skin and then came all the way out in the morning. My dr. appt was scheduled the next day so they said to just come in then. That night I woke up to cath and had violent shivering and a sudden fever of 102. I ended up in the hospital for 4 more days with a septic infection. So miserable. And to add more pain my IV's kept breaking down. All in all I was in the hospital 21 days and when I got home I was very weak and lots of nerve pain. I had to go way back up on my lyrica and was taking oxy daily for nerve/bladder/abdominal pain.

                  We had sold our house right before the surgery and were getting ready to make our move to Hawaii as soon as I recovered. (We didn't think it would be this hard.) Once I felt half human again, crazy us were determined to keep our promise to our youngest grandson and take him to Disneyland before we moved. (It was his turn since we took each of the older ones when they turned 5 :-))
                  A week later we were on the plane and here we are in Hawaii where I can swim and snorkel (and not worry about peeing on my cushion and car seat afterwards...)

                  I'm still having pain when I insert the catheter and there is often a little puddle inside the belly button. Any advice? ...Waiting for a return call from the surgeon...
                  Just wanted to update.
                  http://www.laughwithmecrywithme.com
                  my website & blog

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                    #10
                    everything takes time
                    good you left a message for the surgeon
                    Also good to talk to the surgeon's nurse He/She sees a lot of these type of surgeries and knows how to teach people about signs and symptoms to look for following surgery and can tell you what is normal and when to call back if it doesn't resolve.

                    pbr
                    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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                      #11
                      Sounds like a long road... the older I get with SCI the more I am convinced all surgeries are major. Sounds as though you are progressing forward and the desired improvement in quality of life will make the surgery well worth it. Wishing continued healing and all the best.

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                        #12
                        Thanks Chesbay and sci nurse. The dr wants me to put a foley tube in for one week to let it heal more. I think it had a setback when I used a foley and leg bag for the flight here and even though I deflated the balloon before I took it out it had a little extra lip that stuck out a bit and and when I removed it it hurt.

                        So tonight we put one in. Emotionally it was hard to put it back in cuz I have some fear it's gonna hurt me again coming out or cause an infection while its in. I also really hate tubes coming out of my body and it feels like going backwards. Also I don't think I can swim with it in right? After all I've been through this is probably kind of silly but I am so ready to be done with this.
                        http://www.laughwithmecrywithme.com
                        my website & blog

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                          #13
                          I'd ask your Dr, but if you cap the foley you should be able to swim. You can with a sp that way. But double check with your Dr that there aren't any specific reasons he wouldn't want you to do so.
                          Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

                          I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

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