Hi,
I am an adult Tof/oa nearly 40. Dare I say it approaching middle age! I had a colon transfer to fill the gap when I was 13 months old at GOSH. The original repair where my oesophagus was stretched down to meet the stomach broke down so I ended up with an oesophagostomy and gastrostomy until the colonic transfer.

Like alot of you I have a few Tof related issues. The tight throat when I am nervous, reducing my voice to a whisper (a croaky one at that!). I have since discovered that my left vocal chord is paralysed. I have also had a problem with low blood sugars and night sweats (due to gastric dumping leading to reactive hypoglycaemia). While most Gps and surgeons are great in being helpful and concerned, I sometimes find explaining the extensive medical history that TOF/OA related problems build up an uphill struggle.

I was wondering if anyone would be interested in a conference day dedicated to Adult TOF/OA problems and acheivements? The idea would be to meet fellow TOF/OA people and take part in discussions with medical specialsts that are familiar with some of the problems we are experiencing. Most important would be the socialising. Would anyone else be interested in this? I will be writing to Diane at TOFs with this suggestion too.

I would really like to hear your comments.
All the best
Sophie

Dear Sarah,
Many thanks. How is Toby doing? As soon as I know what we’re doing, I’ll let you know.
Say hi to Toby.
Very best wishes
Sophie

hey, this idea sounds pretty cool.
im a TOF/OA and im 22. i just started having difficulties swallowing again and had to have a gastroscopy the other week and now i need a barium swallow.

i’d be interested in this. i wanted to go to a tof thing but they seem to mainly be in nottingham and im down near brighton. so its a bit of a mission :(

Alice

Hi Alice,
How are you? I hope they discover what the problem is.

I am really glad that you are interested in an adult Tof conference. It is difficult to travel such distances. I am also in Sussex and felt there just wasn’t enough time to get there. I guess the people up north have a similar problem when the conference is in the south. A central place with good public transport is on my mind. If you have any suggestions that would be great.

Good luck with the barium. The stuff didn’t taste so bad when I had one last year.

Best wishes
Sophie

hey sophie, well im hoping they’ll find out too. the scope didnt show much, they were thinking i might need a stretch but they didnt do it, though it was apparently a pretty narrow gap. odd.
it was horrible having it, its been so long since i needed one, and i didnt cope too well, i had sedation but it didnt help i was still lashing out and trying to get the camera out and i kinda reacted to the sedation, i had uncontrolable shakes…..it was crap. :(

so the barum is nothing lol. its kinda skanky but not nearly as horrible as a scope from what i can remember.

so where abouts are you in sussex?

well brighton is easy to get to i think from london etc. im in Bexhill you now it?

Alice

Hi Alice,
Sounds like you had a very bad time of it with the gastroscopy. Bexhill sounds familiar. I’m in Midhurst, West Sussex. Brighton is a good place and it has a number specialists. Oxford is more central and has specialists but the rail links not brillaint (besides I have a phobia of Oxford Hospitals).

Do you have a date for your barium?
Take care
Sophie

a phobia of oxford hospitals?? random. lol

yeah i had all my surgery in brighton at the royal alexandra hosp.

brightons got good connections and its a cool place too

im still waiting to hear whe it’ll be but i only had the scope about 2weeks ago so should be soon…i hope.

Alice x

Hi Alice,
I will keep Brightom in mind. Although my initial surgery was in Great Ormond Steet, we moved to Oxford and I had some very bad experiences in the hospitals there. I am aware most of the surgeons will have retired and new and very skilled ones have taken their place, but my memories remain.

How is your swallowing at the moment? I hope you get some answeres before xmas. Are you an artist?
Best wishes
Sophie

oh i see.

its a bit painful at times to swallow and its seems to be taking me a long time to eat etc. the same sort of things as when i was younger.

yeah i am an artist, why? did u see my other posts?

i see your on facebook, you should maybe discuss your ideas for a conference on there?

Alice

That’s a good idea about Face Book. I have e-mailed Diane at the Tofs office suggesting there is a need for an adult TOF/OA conference. I am waiting to hear from her before I go any further.

It would be really good to see how many more adult TOF/OA people would be interested. Once I have some idea that people would be generally interested I will start planning. I am open to all suggestions.

We chatted on the forum a few years ago. You had just done your show for your finals.

Do you like soup? Cos butternut squash soup is particularly warming and is not too difficult to get down. My GP has just prescibed some high calori drinks because I have a very minimal appetite and am struggling with my weight and IBS. It would be interesting to see how many of us also have IBS.

I hope you hear very soon about your barium. DO you have reflux?

Take care
And best wishes
Sophie

oh yeah i forgot about that, i didnt realise it was you i was talking to.

i honestly think people would be interested in a gathering. because there’s lots for mums and their kids but not s much for us adults with it.

yeah i like soup, but im a big eater!! i love food i eat like a horse but like you im skinny, im just 8st. when i was in school i had to have those calorie drinks - maxijul?- i hated them!! they were disgusting. lol. but i was young so they’e prob different now.

i dont have reflux, as far as im aware. but i have mild asthma and a hypo-plastic lung from the operations i had. but other than that i dont think ive got much else.

i could post something on the tofs facebook? im on there alot.

Alice

Hi Sophie, My name is Sam, I’m an adult TOF/OA, treated at GOSH in 1965. I would be very interested in attending a conference for adult TOFs. I found the TOFs conference in Newcastle extremely helpful, however it was a long trek from the south coast. I still experience problems with servere dismotility, reflux and diffuse oesophageal spasms. Ive lost count of the number of times Ive had gastroscopies, barium meals etc. So I think it would be good to meet up with other TOFs to share experience.
Sam xx

Hi Sam and Alice,
It is great to hear from you Sam.
It seems there is a pocket of us on the south coast. Can I ask you Sam, was it Mr Waterstone who did your initial surgery? He did mine.

Also, do you or do your parents remember a ward sister from GOS called Sister Moxley?

I am going to contact the TOF Office again tomorrow. I would ring but have lost my voice. It would be great if you could put it on Face Book Alice. I’m 7 stone 6 at present and 5 foot 6 inches. Are you very tall? Sorry, I am not trying to compete. Those drinks you mentioned are revolting but the ones I am having are actually quite nice.

How are you doing these days Sam? And have you had any problems finding Adult drs and surgeons familiar with TOF and OA? Are you able to get enough calories in? From what you say it sounds quite a challenge.

Take care and speak soon.
Very best wishess
Sophie

hey sophie yeah i’ll put it on facebook now.

im about 5’3” so you’re taller lol. but i think i just look quite athletic, i play squash alot and i used to be an army cadet too.

well im glad they’ve improved the calorie stuff cos that maxijul was rank. lol

speak soon

Alice

That’s brilliant. Thank you. It was good to hear from Sam. Mine is called Fortisip. I have tropical fruit flavour.

I lovr the idea of squash, I just have a problem hitting the ball. I am not too bad at swing tennis (you know a ball on a string) so long as I am playing against myself.

I have heard from Diane who is looking into it. She has a major project going on at present and wants to get that sorted so she can give her full attention to the idea of an adult conf.

Are you still painting? I really liked what you posted down the line a few years ago.

Very best wishes
Sophie

haha hitting the ball in squash usually helps

ive just posted a topic on facebook, so we’ll see waht happens!

i am still painting and im now training to be a post compulsory art teacher too! if your ever on facebook you could add me and see more of my work?
its nice that youre interested.

well i hope diane can help cos i think this event could be really good.

Alice x