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Oesophageal Patients Association
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Advice needed

Hi,

It's been ages since I last posted, but wondered if anyone can shed any light on new and worrying symptoms?

I hate to repeat what I've put before, but Dave had his Ivor Lewis in January 2017, spent 5 weeks in hospital with double pneumonia, sepsis and chronic motility problems and had a gastric tube in to drain bile for the full 5 weeks. His eating has been really poor since and his weight went from 11 1/2 stones to 10 1/2 which is thin for him as he was tiny to start.

He had 5 gullet stretches as food was sticking and his gullet narrowing, but nothing has helped with the motility, air /gas build up and bile reflux.

In January this year after another endoscopy. they found that even afyter a 24 hour fast his stomach was still full and suggested they stretch the pylorus. Dave refused as he was worried about increasing dumping syndrome.

Since June, his weight has dropped another 1/2 stone t 9 stone 12 and he looks awful. He started with persistant runs 8 days ago and it isn't stopping, so not cobsistant with dumping or a tummy upset.

He saw the consultant and is waiting for an appointment to stretch the pylorus as he feels he has no choice now, but the runs weren't mentioned as it had only just started. He has lost another 2lbs since last week. I'm hoping that there is a logical reason for this, but panic is also setting in. Has this happened to anyone else?

We did try to contact the specialist nurse last Wednesday, but as yet no one has got back so think she may be on holiday.

Apologies for the long post, but we really are worried.

11 Replies
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Lynn which hospital did Dave have his op at again remind me? Xxx

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The same as your Dad Amy, Stoke City x

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I thought it was but was just making sure. I think my Dad had a different nurse, her name is Sarah and there was also Tina. But my mom spoke to Sarah on Friday so there’s someone available, she said she’s at Stoke tomorrow because she’s going to call my Dad back. Maybe you could give them a call again tomorrow? Even if it’s not your usual nurse I’m sure someone will help xxxx

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Hi only had one stretch. I was prescribed sucralfate, creon and preobotics. This has helped with gas and upset tummy. I have cut out Gaviscon so it is working. Also had breath test for bacterial overgrowth that can cause upset tummy. Mine was negative also going for lactose intolerance test. The joys of post op but glad to have had the op.

Maybe he needs more tests.

I hope he gets it sorted.

Best Wishes

Debbie

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Hi Lynnbibb, I am sorry your hubby is feeling poorly. My husband was told his digestive system was really slow after the Ivor Lewis. He was given an anti sickness pill which helps to speed up the digestive process - all I can think of is Ondansetron, but I am sure it was another one - If I can find the old paper work I will let you know. Try your consultant again, because they are the only ones who can really help here. good luck. Carrie

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Thanks for your replies. He's been to see the nurse who has prescribed Loperamide Hydrochloride for the runs and says he is just borderline dehydrated ~ he has lost another 2 kilos since last week!! We have been advised to contact the specialist nurse, but so far no return to our calls, so wonder if she is away. Hoping and praying it's not the big C back!!

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Keeping everything crossed Lynn xx

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Thanks Deb,

Worried sick as Loperamide not working, eating getting harder and no damn person from the hospital has got back to us in 7 days!! We're going to ring the hospital again this morning and the doctors and be more insistent!!

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You need to Lynn because we have spoken with the nurses 3 times this week. You could call and ask for Sarah. She’s wonderful. She will speak to you today I guarantee xxxx

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Oh dear Lynn! Poor Dave - he’s really going through the mill. Don’t wait for a call back - just turn up at the hospital as an emergency. If you leave it too long, he really will be very dehydrated and that’s clearly going to make things worse. Stephen is also having problems again with food sticking and we’re waiting for another endoscopy to see what the cause is. However, our GP did say that if he was getting dehydrated he would be admitted straightaway and given IV fluids. 7 days is just too long to wait! Thinking of you both. Kate x

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I agree .go to A & E if he is dehydrated they may admit him and put on drip. Good luck.

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