I’ve just joined the site and wanted to say hi. Im 22yrs old and was born with OA\TOF and to my knowledge ive never spoken to anyone with the condition. It would be really nice to share experiences with someone. I feel that ive had it quite easy really, not had many stretches that i can remember and i love making up stories about my scar. I do still get stuck at every meal and i guess i just want to get in touch with someone who knows exactly how it feels to live with it. I live in Brighton so if you are in the area and fancy a beer then its my shout
Plus if any parents want to chat with someone who has lived a regular childhood and adolescence despite being genetically different please get in touch
Hi, My name is Jessica, im 25 and i live in Australia.
My daughter Naioka was born TOF/OA so it would be good to talk to an older person about it.
Like you she has had it pretty easy so far, shes 4 and has only had 2 dilatations. she eats everything and only chokes a little bit these days.
So anything you can tell me about how it feels when your choking to any problems you had growing up i would appreciate.
Cheers,Jessica and Naioka Thorpe.
well yeah i did have a few problems when i was younger but before i go into them i’d like to reassure you by saying that ive had as normal a life as anyone else. TOF hasn’t stopped me from being active, sociable and enjoying myself.
my first memory of TOF was getting stuck solid, i must have been about 6/7 and i remember being quite scared, the food just wouldn’t come up or go down. I did the trip to hospital and it was all fine. I later found that fizzy drinks really are better than flat drinks at washing down stubborn stucks. over the years i have found that i can feel food building up around my scar site and wash it down before it becomes totally blocked and i start the hiccups. i tend to take a drink every 2/3/4 mouthfuls just to clear my throat. this is partially because i ignored the advice to chew more than everyone else. i just wanted to shovel chips and chocolate down my throat like anyone else. ive just become used to the fact that if i want to eat then i need a drink, which gets annoying after the pub and you’ve only enough for the kebab and not the can of coke, but im sure Naioka wont have to worry about that for a long time Getting stuck does feel a bit uncomfortable and i do get a little panicky when the hiccups try and force it up, its also not totally devoid of pain but its a very dull pain for me. i have been caught out several times whilst out eating where there is no drink and i either hiccup and vomit but most of the time i can swallow an air bubble which, although quite painful, can force it through. ( a useful technique). woah ive been on a rant so i’l leave it there but if you have any specific questions please ask and i’l give you what i know.
Helllooo.
Im 19, live in Leicester,Ive just joined the site.
Ive never spoke to any1 else that has this condition either.
I do always have to explain it to people i meet but they never really understand wat it all is,so it is abit rubbish,and then some people look at you n think ryt ok u freak.
Ive had it pretty easy having a normal life really. I had all my surgery when i was really young so i couldnt tell you everything ive had done, i have to ask my mum all the time.
Im still abit concious about my scars when i go on holiday..people stare which gets to me abit.But people can look, im a TOF and there’s nothing i can do about it, atleast im alive,well and happy hey.
Sorry its abit of a rubbish post, im just babbling on, but thort i wud write. X
great to hear from you, im gonna be in stafford in a month or two and ive been contacted by another tof our sort of age and it would be fun to go out for a tofs dinner and a drink perhaps. my email is if you wanna stay in touch.
its interesting hearing about your feelings towards your scars, they’ve never bothered me but im a guy so they are a bit more acceptable i guess. do you have many? ive got one big one and a tubehole scar.
I’m a 27 year old TOF from Southampton and I too would be interested in hearing from other TOF’s. I don’t think I have ever met another TOF so would be good to speak to others about there experiences. I’ve written a short description of my experiences of being a TOF, I’ll try not to ramble too much
I was born 2 months premature with a Long Gap in my oesophagus with the top part of my oesophagus attached to my trachea. The gap was repaired by using part of my colon to fill the gap. This had a slight complication if the fact that the oesophagus grew faster than the rest of me and kinked. This was repaired by re-routing the oesophagus into the back of my stomach. I was finally was discharged from hospital about 18 months after my birth.
At about 14 I was re-admitted into hospital with stomach adhesions which caused part of my intestine to kink. At the age of 19 I was admitted into hospital with pancreatitis. This was caused by gal stones. After having my gal bladder removed everything has been fine up until 2 months ago. Two months ago I was admitted to hospital with another attack of pancreatitis. This time the cause is unknown so I have been advised to stay off alcohol…. much to my disappointment :(
I think that is a brief run down on my TOF medical history.
As for my scars, I think I was more aware of them as a child but now they really don’t bother me, if anything, I find them interesting. They have sort of grown as I have got older and have stayed about the same size in relation to me. Over the years, the main scar on my stomach has been opened up about 4 times and has been added to over the years. It’s in the shape of a cross so from a distance it almost looks like the start of a six pack (I better not put on weight other wise I shall look like a hot cross bun!).
It would be great to hear from any TOF’s out there as like Paul and Tasha, I have never met another TOF. I can be contacted on
Mark
P.S. I think getting a group of TOF’s together for a meal is a great idea. I’ll be up for that.
Hey Paul, my name is Ben, Im 22, live in London and am a TOF (obviously). Like you I have never met anyone with the same history, its really wierd to think that there other people who know exactly what its like to **** a brick when you have a meal without drink in sight.
My mum does a lot of phone support for TOFS and forwarded this site to me, it never really occured to me to look it up!
Im not really sure where to start so I guess if there is any questions you want to ask me then feel free.
Im glad to here you have got on ok with everything, I’ve been pretty lucky too, a few mishaps at the start, but all good now.
hi im michelle im 38 years old. i have never spoken TOF sufferer before. I have alwyas had trouble eating without drinks. And also ge stomach cramps. I have just viited the docs again and he is going to refer me to sheffield hospital asap. Looks like my gulet needs either another stetch or has a bend in it agaian.
Hi, my names Karen and I’ve just joined this site.
I m now approaching 34 and had surgery for an OA when I was 2 hours old, at GOSH.
I have never spoken to anyone else with OA and therefore would be great to share experience with anyone else with the same conditions. Unfortunately I still do get food stuck at 95% of my meals and in fact yesterday I was taken into hospital for an endoscopy to remove a circle of carrot that that been stuck since last Tuesday, thus only being able to suck rice pudding and soup. The last time I had some thing stuck that severely was when I was 7 and I can remember my mum making me suck butter and drinking cod-liver oil, it did work then but not this time!
I live in Ellesmere so would love to hear from anyone that lives neat me.
Hope to hear from you soon
Hi my name is Sarah and guess what, i’m also a TOF/OA!!
I’m 24 now and haven’t really had any trouble apart from the usual swallowing food issue and had several hospital trips when i was younger! I was operated on by Professor Spitz at GOSH just a few hours after being born.
The only probelms i really have are that I find my throat tightens when i get nervous and have recently developed quite severe lower chest pains and am being referred to the hospital but no know seems to know what it is, i’m sure its related though!
Would be great to hear from people who have grown up with this and talk about their experiences
I too get the tightness around the throat. This usually happens when I get stressed and has only started when I was 22 at university. I don’t get chest pains though. I have never really given it much thought. Let me know how you get on at the hospital
wow, its wonderful to see a lot of you older tofs, i’ve recently started getting some strange chest pains but didn’t even think it could be related, its probably cos i smoke though. I’ll be very mobile this summer and could arrange a meet if theres a couple of you in the same area.
Hi Paul (and others)-
I recently joined the TOFS community. I’ve used the TOFS info. often, but just didn’t get around to signing up. Anyway, I’m 34. I was born with TEF B in California. I had my repair done at 2 days old. Even after the repair I ended up being hospitalized for another 3 months due to episodes of respiratory arrest and severe narrowing at the repair site. Essentially I was told by my parents that I would arrest with feeds due to compression from the esophagus. Anyway, I had a g-tube for almost the first year. I also had numerous dilations. I have the characteristic scar under my right arm/ribs/back. I also have a few on my abdomen from the g-tubes. As for health. I do consider myself fairly healthy. Granted, most colds go straight for the lungs. So, I do start antibiotics (and sometimes steroids) quickly and use albuterol inhaler. I eat anything and have no issues with foods. However, I can remember times of having difficulty with certain textures.
My son Mason (age 5) was also born with TEF C in Washington State. When he’s healthy, he does well. When he’s sick, it takes him so much longer to fully recover!
Hi Paul (and others)-
I recently joined the TOFS community. I’ve used the TOFS info. often, but just didn’t get around to signing up. Anyway, I’m 34. I was born with TEF B in California. I had my repair done at 2 days old. Even after the repair I ended up being hospitalized for another 3 months due to episodes of respiratory arrest and severe narrowing at the repair site. Essentially I was told by my parents that I would arrest with feeds due to compression from the esophagus. Anyway, I had a g-tube for almost the first year. I also had numerous dilations. I have the characteristic scar under my right arm/ribs/back. I also have a few on my abdomen from the g-tubes. As for health. I do consider myself fairly healthy. Granted, most colds go straight for the lungs. So, I do start antibiotics (and sometimes steroids) quickly and use albuterol inhaler. I eat anything and have no issues with foods. However, I can remember times of having difficulty with certain textures.
My son Mason (age 5) was also born with TEF C in Washington State. When he’s healthy, he does well. When he’s sick, it takes him so much longer to fully recover!
Thanks
Cori Ponte
Washington USA
hi my son is almost two and is a tof/oa and aswell as choking on food always chokes on liquid i have recently been told that he only has his right vocal cord has his left one has been damaged is there anyone out there who can enlighten me???????????????
Hi. My name is Jane and I am 37 years old. I live in Huddersfield, West Yorkshire with Richard my husband of 4 years. I was born 6 weeks premature weighing 3lb 3oz. I was transferred to Sheffield Childrens Hospital where I spent the first 4 months of my life. I have OA, and was fed by a tube into my stomach until I had the operation to join the gap using a piece of colon. The first operation to do this was when I was 20 months old. This was unfortunately unsuccessful so they tried dilation, but I needed another operation at 2 years 2 months. Since then the only problems I encounter is needing a drink with my meal, and being self conscious of my scars (would never wear a bikini).
Like most TOFS I have never met one and have only just recently found out about this site. I am very interested in meeting someone else with OA.
Looking forward to your replies.
Jane
