Hi all
Our 8 month old daughter Isobel has just had her long gap OA replaced with a piece of her colon . Her surgeon is Mr Crabbe at Leeds LGI . Has anyone out there had the same operation ? She appears to be facing years of being tube fed and chronic lung disease . It would be nice to hear from any parent whose child has had this operation.

Hi How is isobel doing?  Has she had her operation yet?  if so i hope it went ok.

I have a daughter who was born with a tof/oa.  she is 5 months old and has so far had 8 dilitations.  the surgeon who performed her recent dilatation said that if it keeps narrowing back to a pin hole size then they need to look at why the dilatations are not working and look at alternative operations.  Did isobel have a lot of narrowing and dilitations before it was decided she would have this surgery?  if so how many dilitations did she have?

freya has been having dilitations every 3 weeks.  so i feel like the hospital is my 2nd home at the moment.  i cant fault the staff there they are all lovely but i would like to spend a bit more time at home.

Look forward to your reply.  hope isobel is doing ok

Rachel, freya’s mum.

Hi Rachel

Isobel was born with virtually no oesophagus a short upper pouch,a 4cm gap even when pulled together, and a low thin fistula which had to be completely removed down to her stomach, as it re-attached to her bronchus when she was 6 weeks old. According to our surgeon our only options for her were either colon or gastric transposition . As such she had no dilations because she had no oesophagus to dilated . Her new oesophagus made from a piece of her colon is only a few months old so it is too early to tell whether we will need dilations in the future .

Hope this answers your question.

Thanks for replying so quickly.

you have had a rough time also then.  was she sham fed untill they could do the operation?  freya is doing ok today.  her dilitation went ok yesterday,  we are now having to go in every 3 weeks for a dilitation and they will re-evaluate it after christmas as if the stretches are not working they will have to look at what they will do next.  I am trying to enjoy her but i do get very anxiouse about her feeding.  she was doing ever so well up until last week but when she goes down hill it tends to be very quickly.  she is such a little fighter though, and smiles alot.  ive been told to start weaning her as that should help to naturally stretch the os.  i have to say im not looking forward to it but she seems eager as she watches me eat so i will see how she goes when i get her home.  what hospital is isobel under?  freya is under adenbrookes in cambridge. 

Rachel,

Hi
My mum is probably better writing to you on this topic but I had the colon transplant and I am fine now. I know I was tube fed but I don’t know how long for. I got really fat though and my 2 year old brother kept pulling my tubes out which didn’t help.
I’m 28 now and get a “food lump” where food has got stuck in my neck, but apart from having to eat slowly and chew loads before I swallow I’m fine. I remember as a child learning how to cope with my condition. I often got food really stuck, if you know what I mean and I had to make myself sick because it would never have gone down otherwise. Now though, I know the ways of the “lump” and I have tactics to make it go down. Very rarely do I have to make myself sick. I can’t eat late at night though because gravity helps and if I lie down soon after I have eaten I get reflux and start coughing my head off in the middle of the night.
I haven’t had to have any dilations(that I know of). I have had a few chest infections including pneumonia a few times but that is mainly after surgery.
I just wanted to give you a positive outlook because I really am hunky dorey.

Hi Rachel

Isobel had her surgery at Leeds LGI . We sham fed her until she had her operation. At the moment she is fed by gastrostomy tube and we are trying to give her bits of puree . We’ve been told to expect a long road until she is totally orally fed . Our main concern is keeping her out of hospital over the grotty winter months , chest infections seem very common for TOF kids . One thing we have learnt is kids are stronger than you think and great fighters.
It would appear that the dilations are something most kids have to go through but reduce as they get older
As Emmas post confirms we will get there in the end and hopefully the kids won’t remember too much of it !

Hi Emma

It’s nice to hear from someone who has had the same operation as Isobel , it would appear to be the rarest from of TOF/OA . It’s reassuring to hear that your are doing well , we just hope Isobel keeps clear of infections so we can start the long process of teaching her to eat . I know in 28 years time we will look back on all of this and wonder what all the fuss was about.

Hi all

I too have had a colon transplant.  The only complications I have had was the the colon part grew faster and kinked.  To correct this they moved the colon to go into the back of my stomach.  After the operation I was fed by tube for a while as I refused to eat normally.  Apart from stomach adhesions at 14 and pancreatitis at the age of 19 and 2 months ago I have been fine.  I live a normal active life.

On another note I think Emma has answered a question that I was going to ask.

Over the last year or two, occasionally I have been getting the sensation of fluid trying to go down the wrong way when I go to bed.  This has happened no more than a handful of times but does leave me coughing and feeling chesty.  I have been to my GP and her only answer was that fluid wasn’t going into my lungs but she offered no explanation of why this has started and what is causing it.  The only thing I can put it down to is over the last year I have been eating later and later which is probably causing reflux.  I have never had reflux as a child and have no idea what it feels like.  The only complication I have experienced as a child and even now is when I eat too much I tend to get bloated easily.  This will cause quite painful ingestion’s but thats about it.  I have always known that my food goes down by gravity but can’t say anything has happened to make me feel aware of this.

I guess I will have to try to eat earlier. Thanks Emma

I would be happy to answer any questions than anyone might want to ask.  It would be interesting to hear other TOF’s experiences.

Kind regards

Mark
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Mark

Thanks for replying . It’s nice to hear from another person who has had the colon used and is living a ‘normal’life without too many complications . The more success stories we hear the more confident we feel about Isobels future . Thanks again.

John

Hi Emma,

sorry this post is late.  ive since had a fair few trips to hospital with freya and had a couple of hectic weeks.  its really nice to hear your experience as a grown up tof and how you have overcome problems with food.  reading your post has shown that there is light at the end of the tunnel.  which sometimes i forget when im in and out of hospital.  she is doing really well though, she is sitting up now and rolling over so its not held her back physically.  which is lovely to see as she is due her 10th dilitation in november.  she definantly strong to go through all she is and smiles away without a care in the world.  like you say its far worse for the parents than the child as luckily she wont remeber the whole experience when she is older.  i have started a photo album which has pictures of her 1st operation to recent visits. i will keep adding to it so in years to come i can show her and it will help her to see what she went through. 

Thanks again,

Rachel
x

Hi i had a colon interposition just as Mark Did, i had to have a peice taken out as it grew too fast and got tangled slightly. I did suffer with reflux and lots of chest infections and refused to eat but i soon got there in the end. I also suffered with ‘coffee ground ’ which didnt taste nice!
I still get very chesty and sometimes food sticks and wont budge so i need to have a drink to shift it.
I also ended up in hospital a few times when a peice of meat would get stuck! But apart fro that im not doing to bad now.
Just found out that Mark and i had our surgery done by the same doctor at Southampton , Dr Freeman.
Faye xxx

Hi Faye

What did the surgeon do to sort out your oesophagus from being tangled?

Mark X

Hi Mark, Do you mean when i was a baby? had to have a peice taken out as it grew to much. But recently had to have it dilated in a particular place as it was floppy and by stretching it it has opened it up even though it didnt need strectching! Basicly it become to narrow in one area so by stretching it its allowed my food to pass through easier.
I hoe this makes some sort of sense and that i havent confused you!
Faye xx

Hi Mark, forgot to ask are you having a problem at the moment?
Hope your ok.
Faye xx

Hi Faye

I’m fine thanks. I was just interested as reading your last post that it grew faster and got tangled.  When my oesophagus grew faster and kinked it was put into the back of my stomach rather than removing a peice.  I wonder how often the colon interposition grows faster and has to be corrected later on?

By the way, how are you?

Mark XX

Hiya Mark, i got it wrong, my mum said i had to have a second colon transplant as it was to tangled up!
Im not to bad apart from these pains im getting. They have put me on Diclofenic 50mg but its not touching the pain!
I give up. I feel like i need a new body! Apart from that im ok. Ive got my little Jamie off school with a throat infection at the moment so its all fun ang games at the mo!
I know this isnt a nice subject but have you ever had problems with your bowels? Ive always had problems with food going through to quick but latley ive had sevre constipation , its driving me nuts.
I will stop moaning now!!
Glad to hear your well mark.
Faye xx

Hi Faye

To answer your question about bowls (as lovely subject as it is lol) it all depends what I have eaten.  I find that it can very from normal to quite loose on a regular basis.  I have put this down to having my gall bladder removed and apparently this is a common symptom.  I don’t suffer with constipation.  The only time I can remember having constipation was when I was 14, after having adhesions I think I had a couple of spells.

Is the constipation causing you any pain?

Mark X