Hello I'm new!

[loubern]

Hi all,

I'm new here, hello everyone! I'm a 30 year old female from Merseyside, UK. I have Spina Bifida Occulta. I walk fine. The way I'm affected is with my bladder. I have to self-catherterise, which I have done since a child. I cannot wee without this! I'm prone to urine infections and my bowels are also affected, but apart from that I live with the condition just fine. Look forward to chatting with you! xxxxx

[Dodger67]

Hello and Welcome! :happy065:
Please feel free to jump right into any topic or start your own.

I'm Roger, 41yo, SB myelo at L1-2, no hydrocephalus, no Chiari, fulltime wheelchair user, self-employed IT consultant, have a girlfriend, no kids but uncle of 5, South African.

[Barb]

Welcome to this wild and crazy group :bluesbrothers:

[Mustang Sal]

Hi Loubern

I'm Sally, a fellow Brit :)

I also have SBO along with diastematomyelia and kyphoscoliosis. Do you have any curvatures or abnormalities? I ask because i've never really met anyone else with 'closed' SB so just wondered how it manifests in people. I also have bladder and bowel problems but i've never really had them diagnosed as i've not even seen a neurosurgeon for about 11 years. I know I really should go to the GP but I find it hard to talk about it so just waiting to pluck up the courage!

Anyway, just wanted to give you a warm welcome :)

[LisaJoy]

Welcome, Loubern! I'm Lisa -- I also have the closed form of SB, but with lipomeningocele, split cord malformation, and sacral agenesis. Right leg brace & one crutch, self-catheterize, minor bowel troubles. I'm 44 (yikes, almost 45) and a college history professor.

[Gymp]

I live with the condition just fine.

That's good to read!

Hi Loubern,I'm Gymp,a 52yr old with SB and doing just fine also.Good to meet you and welcome to the forum!

[rajurs29]

Hi Welcome; nice to meet you :)

[loubern]

Hi Sally and everyone else, sorry for the delay, I haven't logged on for a bit. Yes I have curvature right at the bottom of the spine with a hole at the base above my spine. I don't really know all the medical terms! xx

[lilyv1]

hello ,

i am a mother of a child with spinal bifida she is twelve and has the same conditions that you have about the bladder and bowels i am interest in seing how were your teen years cuz they are aproaching and i dont want her to get deppreses luv to hear from you lily

[Barb]

Just wanted to jump in and welcome all the new members

[loubern]

Hi Lily,

When I was really little and told I had to catherterise, my mum had to learn to do it for me, by 12 I was confident in doing it myself. It's quite hard at school when people are waiting for the tolilets but I suggest your daughter always empties her bladder fully so as not to get recurrent urnine infections. Wearing a sanitory towel also helps for the bowel problems as I often didn't know if I was going to have a little accident and I always have baby wipes with me too. I used to get down at that age about not being like everyone else but my parents would also tell me to look on the positive side, I realised I was lucky that I could walk, others are far worse off than me. I find that helps still today! It also helps if at least one close friend who you can trust knows about
your 'toilet' issues so as to support you. I'm more open know I'm older but in my teen years I felt embarrassed and only one friend knew about my condition. It's all down to the individual though. There is a programme here in the UK on tv called 'Born to be different' it started last year and follows children with various disabilities. One little girl had spina bifida, walked fine but had bladder/bowel problems with catheterisation, the series returens next week now the childern are all 8 and it will be following their lives in the years to come. When it has been on next week I will try and find a link for you to watch it online. Hope I have helped! Please feel free to ask me anything else! Regards Laura xxx

[LisaJoy]

Hey, Laura -- would you post that link for us if you find it?

[Mustang Sal]

Hey Loubern,

I know exactly what you mean about being embarrassed about your condition as a teen - it's hard enough when your body is changing and all the raging hormones etc! Your parents sound a lot like mine - I was raised with the mantra 'there's always someone worse off than you' and I still live by that today. That and 'what doesn't kill you makes you stronger' :)

I've been following the kids in 'born to be different' since it first started - it's an amazing programme. That little girl was SB is a proper little character isn't she! Last year she was about to have surgery to make her continent, so we'll see how she got on with that. I'm not sure if the link would work outside of the UK, but it's worth a go.

My bladder/bowel stuff was actually ok-ish as a child (I was plagued with UTIs though, as many people with nerve damage in that area are)but things have got worse over the years, but I just never wanted to admit to myself that it's a problem. I finally got over myself today and talked to my GP about it, which was scary but I feel better that i've actually admitted it to myself and shared my concerns with a doctor. I'm being referred to a urologist and am due to have urodynamic tests done, so i'll know more about it all once that's done.

[LisaJoy]

Hooray, Sally! I'm betting you will be glad you did it.

[Mustang Sal]

Thanks Lisa, I hope so!

[loubern]

Good luck with the test Sally, you'll be fine. I've had those dynamic scans and they're nothing to worry about. xx

[Mustang Sal]

Hooray, Sally! I'm betting you will be glad you did it.

Well, you were right - had the tests yesterday and it really wasn't as bad as I feared :)

I do indeed have a neurogenic bladder, that much is clear. Basically, i'm retaining about 300ml of urine without realising it - i'm simply not able to empty properly. They also found that my bladder has massive contractions when it thinks it needs to empty, but even these are not strong enough to empty residual urine, so there is a concern that these contractions have pushed urine back up to the kidneys. So, I have a kidney ultrasound coming up, then another appoinment with the urologist to talk about management - his registrar (not sure what you'd call them in other countries, but they are basically senior doctors training in a specialty, but not quite consultants yet) said i'd be most likely looking at self-cathing and medication, which i'm not too worried about. I used to be worried about getting the catheter in, but I didn't even feel the one they put in me yesterday so i'm pretty sure i'll be fine.

As for bowel, well they recognised there is a problem with the muscles there but they're not going to refer me to anyone just yet as sometimes treatment for bladder issues like mine can help ease bowel problems, so will have to wait and see on that one.

So, that was my day. Lisa, I really am glad I did it - the embarrassment I felt at having to pee (and leak) in front of a room full of people was well worth it because now I know what i'm dealing with.

:)

ps, does anyone have experience with Movicol? The doc told me that this should help my chronic constipation, and therefore may well help my bladder. Any opinions on this?

[printemps]

Hi new members , welcome . Got a great group here lots of diversity . I was born with Sacral SB , I can walk , sometimes afos . Neurogenic bladder , incontinence all my life I just turned 50 ( I dont feel like an old man ) so its been along time dealing with it , not such a big deal anymore , life is pretty good I should not complain , although my girlfriend says if I did not complain I would not be happy lol. Take care !

[LisaJoy]

Sally,
Sorry I'm just now getting to this. I'm so glad you've had the tests. Just remember -- all those people watch other people pee and leak for a living! You will not have a problem cathing, and medication will calm those bladder contractions. I think you will see significant improvement in your quality of life as a result of this.

I've never heard of Movicol -- do you know any other names for it?

The US equivalent of a registrar is a resident--medical degree completed, license granted, but still in training. Doctors in private practice don't usually have residents, but doctors on staff at university hospitals with a medical school attached often do. Not to mention med students (working on degree). I was at the orthopedist last week and she had a med student shadowing her -- he looked like he was about 12! The first myelogram I ever had was performed by a neuroradiology resident who also looked like a kid.

[Mustang Sal]

Hi Lisa,

Sorry, I can't seem to find any other name for Movicol, but here's a link for it -http://www.netdoctor.co.uk/medicines/100001760.html

Yes I am glad I had the tests - medication to calm the contractions would be amazing!

[hayley t]

hi mustang sal i am a 26 yr old from oxford with closed sbo. 1 leg is 2 and a half inches longer than the other ani i have curvature of the spine . i am currently waiting for an appointment with an orthapedic surgeon. although reading messages on here am starting to think i have a tethered cord? i also have never met anyone with sb .
i have 3 healthy young boys who at present show no symptoms . i normally manage with no prob just slight limp although past yr severe bck pain, feels like hip pops out and i keep tripping over my deformed foot! it is nice to no i am not the only one! luv h

[LisaJoy]

Welcome, Hayley! It does sound like you could have TC.