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I have spina bifida occulta but in my 40s am developing further problems

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carolius67
carolius67

Hi there.  I have spina bifida occulta, I walk and in other ways am fully functional.  However, in the last 10 years or so (I am 47) I have had increasing difficulty with bladder incontinence, I have had several incidences of faecal incontinence, and now have very sore legs: mainly my knees hurt sharply when I bend my legs too far,  and calf muscles are aching all the time.  Any one out there the same and can give me some helpful tips?  Feeling very alone in all this because how do you tell friends?!

0 likes, 8 replies

8 Replies

  • fiona11437
    fiona11437 carolius67

    Posted

    Hi, don't feel alone, I am 37 and I also have spina bifida occultta and had another operation this year after my spinal cord re-tethered. It has left me with bladder and bowel problems. I am now waiting for ISC training and am being encouraged to use a system for my faecal incontinence. My friends are all great and really supportive and know my problems as I have been honest and upfront with them. If they are true friends yours will too. Have you spoken to anyone at hospital about your problems such as the spinal nursing team? 
    • carolius67
      carolius67 fiona11437

      Posted

      Hi Fiona.  Thank you!  I have not even got that far yet.  All I am doing is having a colonoscopy (to 'rule out' other things), I am having botox on my bladder to help the urine incontinence and nothing else. I am, apparently, under a specialist team at a major hospital in London, but as far as I feel I am being passed from pillar to post.  No one seems to be speaking to anyone else.  This pain in my calves is fairly recent, and this lack of movement and pain in my knees makes me hobble. My GP has suggested cycling to loosen them up.  I walk miles every day and swim at least twice a week - part of which is exercises lifting my knees up to my chin etc.  So why the pain?  Nobody has even considered a scan, and as to care under a spinal nursing care, well that hasn't even been suggested yet.  Oh, and by the way, I have been going to the same GP for years who  has seen my substantial and extended problems and all they do is try to solve the symptoms, NOT  the cause! Do I  have to force my hand do you think and insist that more be done?

      As i say: thank you!

  • fiona11437
    fiona11437 carolius67

    Posted

    Yes you do!!! If I hadn't insisted on getting referred back to my specialist I could have lost my bladder and bowel function all together as well as other problems. Swimming is ok but can put stress on your lower back as can cycling. I try and do both but sometimes can't move afterwards!! Be insistent and pushy, hope you get sorted soon xx
  • frustrated61
    frustrated61 carolius67

    Posted

    Hi Carolius ~

    You sound in such distress and I'm sorry for this.  I won't indulge you with anything other than I will say a prayer that you get good news and feel better soon.

    I will say one other thing.  In the US, we have a drug called bethanecol (Beth - an- necol) and it helps with incontinence.  I know this because I've had to take it because of the heavy amount of drugs I'm under.  I don't know if that is in the UK and I'm assuming you're in the UK...maybe not.  But anyway, you could possibly ask if this will help with the incontinence.  Just an idea and another avenue so you're not left with only one solution.

    Good luck with your procedure and let us know how you're feeling.

    Frustrated

  • ron94718
    ron94718 carolius67

    Posted

    Hi,  for facal incontinence I take a tablet twice a day,  (50 mg) Docusade Sodium, and (8.6) mg Sennosides, its over the counter here in US, generic brand, ressonable priced.  If two does not do the job I increase it to 3 tablets a day. Check with you doctor first as always.

    I get muscle and joint stabing pains from my type 2 diabetics and from the reconstructive back surgery I had about 9 months ago.  I take (75mg) three time a day and it helps.  This one can be expensive even with our US insurance benefits.  Again check with you doctor first.

    Hope this helps some,

    Ron

  • skybluepink
    skybluepink carolius67

    Posted

    Unfortunately the NHS is so  unthinking it believes the text supported by Shine Charity [that Occulta causes no problems  so  is under the low priority policy .Fortunately at 68 I hadhad  it found in direct Research  & had a urethotomy for double ureters

    .As for neurogenic bladder  couldn't catheterise so had  rotated antibiotics  keeping kidneys clear until went out of control with pyuria effecting spina bifida area causing excrutiating pain & spasicity  .Do they want to know ?Objective research unfortunately is no longer.Research seems to be a thing of the past so had to pay for own MRI to get treatment . he Profs & Surgeons to concerned about their remits.

  • kimberly61
    kimberly61 carolius67

    Posted

    I'm not sure you will see this, but I am 53 and was diagnosed 3 yrs ago. I was born with a lipoma on my spine that the dr said couldn't be removed. My bladder has never worked. I had a urostomy bag until I was 21 and I have now catherized for the last 32 years. I have one leg that is a different length and size than the other, and a deformed flat left foot. I walk like a penguin now and have great pain in my legs. I have frequent UTIs and IBS from the antibiotics. I have been wearing pads for years and developed vulvodynia. I.have bowel Incontinence which is worse now, with numbness in the whole area. I have breathing issues and use a cpap machine at night. I have a severely prolapsed uterus, probably due to loss of muscle in the whole area. I am obese and so miserable that I don't know how I will get the weight off. I am having an Mri tomorrow and hope there is still something that can help me, but not too hopeful. I was never told what was wrong with me until I went to a disability dr. I think this is crazy.
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