Hi
I am 8mths post operation, chemo. In August I started to get discomfort occasionally when eating, then acid reflux and regurgitation. I was referred for an endoscopy and possible dilation.
4 weeks ago endoscopy preformed, not able to have dilation as to much food present from 24hrs before. Another one booked which I had yesterday.
Dilation and Botox to the Pylorus successful even though food residue and fluid ++ found in the conduit.
The surgeon also found which he believes is the problem, a pinch/twist at 41cm/hiatus. So I have been referred for a barium swallow and also to monitor how I progress with food.
Anyone else had or have this ?
Best wishes Jennie
Hi Jennie/Jenjen6
I'm not a member of this group but noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.
Wishing you all the best
Yes Jennie I had what they called a hiatus, my colon had slipped into a hole in my diaphragm that has come apart when I was trying to cough and clear my chest. Long story short I had to have 2 barium swallows and while it doesn’t taste nice, the good news there's no pain with it.
something else they did after my second Botox was a pot noodle exposed to radiation and X-rayed while it moved though the pylorus. Interesting to watch both if you get the chance.
Thanks Clive
Since the stretch and Botox I have been trying to eating, first and second day ok which it would be with an empty conduit, lots of burping, hiccups and acid. 3rd day, back to square one, regurgitating the food. So I guess it wasn’t a stretch that I needed, the pinch/twist seems to be the problem. Going to call the team tomorrow.
What have they done to sort you hiatus?
Best wishes Jennie
I had surgery to remove the colon from my plural space and repair the hole I think with packing.
I’ll be honest at the time I didn’t go into detail I just wanted it sorted. I do remember them saying they call it a hernia, but it wasn’t actually a bulge that caused it, the colon had just slipped up causing like a u-bend.
The symptoms I had was like I was lying on a bar across my chest constantly like a numb pain but if I recall right they said that was the diaphragm.
So don’t quote me on this but I think the Botox isn’t an instant fix and once swelling from the procedure reduces that’s when it comes to it own. I say that I had it twice so the first time dint work for me either.
As for the burping, unfortunately its a way of life with me now, because i no longer have the upper oesophageal sphincter to hold the gasses back.
Are you on any medication to assist with motility? I had erythromycin that worked well but found I was being sick and bringing them back up whole so appeared they wasn’t dissolving in my stomach, they swapped them for Domperidone x1 5mg twice a day.
Lastly the acid reflux you need to get that under control, speak to your McMillan nurse and see if you need a medication review. I started of on x1 30mg lanzoprazole once a day, increased to x1 twice a day then x2 twice a day then they tried x1 in the morning and x2 at night and slowly reduced it to what I’m on now x1 twice a day and that works for the most of the time, when it doesn’t and normally at night I have an extra one but this is so few and far between.
Morning Clive
So the update is, eating went down hill by the Friday night, regurgitating what I had that day, I put myself back on shakes for the Saturday, then up it all came that night, the same Sunday.
So today they are admitting me and if they cannot push through the barium swallow to confirm the hernia, which is sitting about 41cm down I will be coming home with a nasal feeding tube. I’m trying to be positive but feel gutted at the same time.
Thank you for your support Clive
BW Jennie
Hello
I thought I would give an update on where I am at 8mths post op.
So I was admitted at it got to the stage where I was not keeping even the shakes down and the weight was falling of me. They gave me fluid to rehydrate, a CT scan instead of the barium swallow.
The CT scan picked up a node on my adrenal gland or clear with the esophagus. I was booked in to sort the hernia/scar tissue with the robotic.
This was last Sunday and what a difference a week makes, I am eating again, mince and moist and have put 3lb on, feels great to eat.
The node, I have a PET scan this Thursday as they have to check I have no other red lights ♀️if it is just the node on the adrenal gland this will be removed surgically and checked if it is cancerous.
So this is where I am, relived I am eating again and enjoying it feels like enormous amounts of food, enjoying peaceful sleep and holding on to hope.
Thanks for your responses
Best wishes Jennie
Hi Jennie,
Thats great that you’re able to eat again. Must be such a relief for you. Hopefully the PET scan results will come back quickly and all clear. At least now you can build your strength back up for the surgery - hopefully in the not too distant future. Glad to hear that things are moving forward for you. Best wishes, CB
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