TOFS forum

Sleeping positions and reflux

2011-10-16T19:07:36Z

Hi can anyone tell me why I only get noticable reflux when I lie on my right side. I sleep elevated and yet reflux still happens if I sleep on my right side. So I sleep now on my back or my left side. I have a long gap OA and and colon graph reconstruction. Does anyone else have this problem.

Insidently I used to have the problem whether I took Omeprazole etc or not and so I don’t take anything now unwanted side effects. I probably get the problem once or twice a month to some extent.

TOF consultants

2011-11-07T14:29:39Z

Has any TOF been treated by Ms Tucker at the QE hospital Birmingham?

Or can anyone recommend a Birmingham based consultant for an adult TOF?

Constant nausea?

2011-11-06T14:29:34Z

Heya guys,

My name is Shannon, i’m a 16 year old long gap (TOF/OA)and I was wondering does anybody else suffer from what seems like non stop nausea that seems to last for a fair majority of the day and/or night? And if so, are there any medicines that you can recommend or tips you could suggest? And I mean any.. i’m getting desperate now

Thankyou! Xxx

(The medicines I’ve already tried are metoclopramide, cyclozine, buccastem, paramax.. I think that’s it? Sorry if i’ve spelt any of them wrong).

Medicines getting stuck and leading to vomitting

2011-09-03T17:08:16Z

Hi all,
I have a dilemma. Like many, I’m on a load of medicines including Thyroxine, Ranitidine and Sertraline (antidepressant). Sertraline keeps getting stuck on the way down and burning my oesophagus to the point that it makes me sick, therefore losing all the other meds and my breakfast. Although it’s not advisable to stop taking a prescribed medicine, I have done so until I can see my doctor. I thought I had solved it by taking liquid Gaviscon before the Sertraline but the Gaviscon messed up my ability to absorb my other medicines. Has anyone else had such a problem with dealing with their meds?
Looking forward to hearing.
Sophie

Reflux in teenagers

2010-07-27T12:21:57Z

Hi, my son is soon to be 13 yrs and is currently taking 20mg omeprazole daily. He was on reflux meds from a baby until about 3 yrs then taken off all meds. At 5 yrs he had a spell in hospital and was put back on ranitidine and domperidone he was on these for several years and I eventually requested a second opinion as they did not seem to be working effectively. About three years ago he was given omeprazole which greatly improved things. On the consultants recomendation we have recently tried reducing to 10mg but he found he was getting heartburn during the day so we increased it again to 20mg. He is also taking gaviscon most nights as the pain seems to come on about an hour after he goes to bed.
My question is are there many older children or adults still suffering with heartburn/reflux. I have been told over the years that as he gets older things will improve but as he is now almost 13 yrs i find this hard to believe. He is otherwise fit and healthy and dong well at school.
I look forward to reading your comments.

Article by adult TOF in Chew

2011-09-18T15:01:15Z

Does anyone know the contributor in the article/ is she a forum member? I’ve a couple of ideas about the breathing difficulties from personal/ professional experience- I am a doctor but I suspect my position as an adult TOF with health issues makes me more qualified to comment!

Geography of tofs - Anyone want to share locations, for support network

2010-09-08T18:59:34Z

My name is Sam,
I am an adult tof/oa living in the south coast, Dorset. I thought that it may useful if we shared our locations, to show the different regions we live in. Any ideas or suggestions….

TOF Adults/teenagers needed for Get-together

2011-08-11T14:40:30Z

TOF ADULT GET-TOGETHER HAPPENING SOON - Book now!

Calling all Adult TOFS - or are you a teenager who might be interested in meeting other ‘older’ TOFs? If so please book now for our TOF ADULT GET-TOGETHER in Worchestershire’s Hidden Garden at Bodenham Arboretum and Visitor Centre, Wolverley, Kidderminster in Worcestershire DY11 5TB. Thursday 15 September from 5.30 - 9pm. (We will enjoy a 2-course supper in the restaurant at 7pm.) The supper will be subsidised by TOFS for the TOF Adults and Teenagers (partners/additional family members to pay for themselves please). If you decide to make a day of it, you could visit the Arboretum, open from 11am, cost £6.50, and join us for supper. Please email full names etc for your booking now to: info at tofs dot org dot uk

Thank you
Diane

Adult conference

2009-11-22T18:02:43Z

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

Wanted: Family in England for a summer-holiday for a TOFS-Teenager from Switzerland

2011-04-07T21:05:35Z

we are looking for an English-speaken family in England for our daughter Shelley (15 years old)where she can spend a summer-holiday to improve her English (she is learning English at school since two years).

She has time to come beetween July 10th and August 14th, 2011. I think it would be good, if she could stay at least for two weeks.
It would be very nice, if we find a family if possible with girls at the same age as Shelley and also with medical experience in easophageal atresia (reflux, dumping syndrome)as well as with haemophilia (in case she is bleeding after an accident).

If you need more information about something, please let me know. Of course I will pay all costs for Shelley during her stay.
regards from Switzerland
Evelyn Svoboda-Siebenpfund
Email: keks(at)vtxmail.ch