Hi - I a 33 year old ‘long gap OA’ woman living in Sussex. I recently found this website whilst pulling my hair out having never really been able to talk to anyone about OA other than my mum, with most doctors finding me ‘quite fascinating’! I am so impressed by the dedication of the parents on this forum - my mum went through a horrendous time with me - this was 1975 and she was very ill after I was born, and living in the middle of nowhere in Norfolk.
I was treated at GOS and then some years later at the Royal Alex in Brighton until I was 12 years old, when I had my last stretch. I was a pretty healthy teenager with only the odd problems with food getting stuck - the rest of my hospital visits were fractures from horse riding, which made a change!
About 10 years ago I started having severe bouts of nausea everytime I ate a meal - a barium meal showed that the join had narrowed. I’ve since been on and off domperidone and losec which don’t really make much difference. A couple of years ago it started getting worse with horrendous stomach cramps once or twice a fortnight and I’ve had a couple of admissions for adhesions.
I had another barium a couple of weeks ago which showed that the gap replacement was not ‘dynamic’ (no peristalsis) and the passage of food was relying on gravity more than anything else. I was admitted for an endoscopy under GA last week but the smallest scope kept catching and coiling up and the larger one wouldn’t fit past my join. They couldn’t see anything sinister but said there was still food in my system which was unusual as I hadn’t eaten for 14 hours beforehand.
I’ve now got an appointment with a consultant in a couple of weeks - has anyone else experience similar problems? what worked or what was the advice? I want to try and be as informed as much as possible as I am not entirely convinced this consultant has much experience of OA. Can I ask for a referral to someone with more experience? At present I try to manage my diet by not eating anything cooked in oil, ready meals, shop bought sauces etc and keeping my portions small - otherwise I can do some pretty good hiccups and other unsociable noises (which my 13 year old son finds hilarious!)

hi, me again - forgot to say the other problem I have started to get over the last year or so is more worrying, I have been waking up at night literally choking with fluid - really scary for both me and the OH as I sit bolt upright in bed gasping for air, I then have to sleep propped up for the rest of the night. My poor OH - he is very tolerant as he has to get up at 5am everday for work! It’s not particularly frequent in occurence - about once a month on average.
Has anyone else experienced this? Is it reflux or something else? I’m an OA not TOF and never had chest problems before. I will also chat to my consultant about this. 
thank you…

Hi Melanie,

Thanks for posting on our forum.  Just to let you know we have had one Adult TOF who has reported similar symptoms which come and go.  That’s not to say that there aren’t others - we just don’t always hear about them.

We’re really keen to find out more about Adult TOFS and their health experiences (good and bad).  Perhpas we could run a report in the next edition of CHEW -  so if you, or any other Adult TOFS reading this are interested, please email us a short synopsis about yourself with a pic if possible so we can include it.

If you’re already had your appointment with your consultant I hope it went well.  You should certainly ask to be referred if you’ve any doubts about his/her prognosis.  Let us know how you get on.

Diane

Hi Melanie

My name is Faye, I was born 1975 with TOF/OA too.

I get alot of your symptoms too.

if you want to contact me your more than welcome.

My Email is .(JavaScript must be enabled to view this email address)

Or im on facebook ,Adults born with TOF/OA.

Would be great to hear from you.

Faye xxxx

Hi Melanie

I am a 29 year old TOF from Southampton and I have also been experencing the same symptoms as you.  Sometime when I go to bed, I wake up in the night coughing and spluttering due to the sensation that fluid is going into my lungs.  I find I only get this about once a month, or perhaps even less.  I have spoken to my GP about this, but she just said that fluid wouldn’t be going into my lungs as there is a flap on the trachea that stops this.  However, I did get the impression she didn’t really understand my medical history.

I have had a colon interposition which had to be repaired 6 months later since the colon part grew too quickly.  The colon part now goes into the back of my stomach.

I have also had stomach adhesion’s to which need surgery to repair as my intestines kinked

Have you seen anyone about this?  I have sort of put it down to a change of life style as I tend to eat quite late, but this might not be the case.

On another note, I too had a endoscope last year and the were unable to get the scope down my colon due too the bend into my stomach.  Was quite frustrating at the time, however, I did get a souvenir photo of the bend

You are quite welcome to email me if you like on .(JavaScript must be enabled to view this email address)

Mark

I read your posts out of interest - I haven’t got TOF myself, but my 3 year old little man does!
What I find interesting is that Melanie’s oesophagus was not ‘dynamic’. My little one (Harrison) just refuses to eat. He has never had to have a single stretch, as the barium swallows have never shown a stricture. He sometimes chews things (like tiny bits of chicken yesterday) but really struggles to swallow. He end up gagging and bringing it back up.
The thing is, he doesn’t seem to have had a full blown ‘sticky’, as described by many parents on here. (I’ve seen a TOF friend a similar age to mine have a minor one, and even that was far worse than Harrison has ever had.)
It’s as if the food does get very far down at all, and therefore is a lot easier for him to bring up??
He has had every test going, and they cannot find a reason why he won’t eat/can’t swallow. The docs have mentioned some impairement in his perestalsis mechanism, but they didn’t make a big deal of it, as if that wasn’t really the problem.

I’m writing here as you guys are the real experts! And I’m hoping you’ll be able to shed some light on the matter and tell me if my theory makes sense!!! i.e. does it sound plausible that the food is getting stuck quite high up due to lack of perestalsis rather than a stricture? He only had short gap so didn’t anticipate such difficulties…

Here’s hoping you can help - we’re reduced to licking foods and only being fed via the gastro-jejunostomy tube and we’re getting desperate.

Love, claire

hi melanie im alice im 22 and a tof/oa

i find your sypmtoms really scary, but interesting.

i also was treated at the Royal Alex’ in brighton as i live near.

i think your the first person on here thats been treaed there other than me! so thats cool!!

i went there recently to take some pictures as its all boarded up and empty :(

can i ask how your symptoms started? cos recently ive been finding it more difficult to swallow, is this the first signs of things going wrong?

thanks Alice x