losing weight still: after 13months... - Oesophageal Patie...

Oesophageal Patients Association

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losing weight still

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after 13months post op I L i have started to lose weight.My consultant thinks im not eating enough, whet to my drs and he has prescribed fortisip twice a day. My bowel movement has changed from every day to once a week and is beginning to worry me as whether the 2 are connect. Should i returned to the drs for more advice or contact my dietician or upper G I nurse at Derby. always on the back of my mine whether something sinister has returned or its something totally unrelated. thanks for any welcome advice.

Martin

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Hi Martin

I would contact my CNS and ask their advice,

I found I lost weight after about 18 months recovery I did a photo food diary (taking photos of everything I eat or drink) And was very surprised at how little I was eating as I didn't get hungry. I could live on cups of tea for days.

I think normal life was slowly resuming and food was not a priority , nor was it conducive to eating lots of little meals, I did end up carrying a lunch box with me which had lots of little high calorie snacks in it so I could graze throughout the day. I still have it and use it sometimes if I'm going to be having a busy rushing around day 8 years on.

Cheers Lizzy

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Thank you for advice.Managed to get a appointment with different doctor and see what he advices, if not will contact my specialist nurse.

I agree with Liz. If your consultant has considered that you are not eating enough then I would take that at face value. You probably have to eat by the clock rather than because you feel hungry. You will probably have some food that gives you trouble, but within those constraints, try and make sure that you are taking in enough of a balanced diet, without overdoing things. It will take a bit of time, and try not to get obsessed with the bathroom scales.

The fortisip will probably look after the nutritional balance.

The lack of bowel movement might be because you are not eating enough, but if you are constipated, you do need to try and resolve that.

If it does not get sorted out I am sure the dietician will give you advice; it might be that you were given a diet sheet at some point and it might be worth checking back on that.

You cannot avoid worrying about whether these things are a recurrence of cancer. It does sound like an eating / digestion problem, but if you are still worried than you should discuss it with your specialist nurse. Things always seem more worrying in the small hours than in the middle of the afternoon, don't they!

Hello Martin, I'm three years out from my op and I run a small support group for Oesophageal patients. You're absolutely spot on weight is a huge issue for all of us. We like obesity sufferers in reverse. There are two approaches, the clinical and the lifestyle or behavioural. The clinical one is to plan your eating and record it on a daily basis and make sure you eat between 2000 and 300 calories a day. This is really boring but it does work I occasionally have to do this if I lose weight unexpectedly, I recently had gastroenteritis (courtesy of my grandson who is very generous with all his infections. So I'm on a 3000 calorie a day regime until I have replaced the stone and a half that I lost. This means six meals a day and lots of between meal snacks. Usually peanuts, cashews and home mad smoothies.

The behavioural one is a lot more fun. Your taste buds have not been destroyed but they way they communicate with he part of your brain that controls appetite has changed and you can reeducate it. I learnt from watching my grandson who is just being weaned and to him food is a huge adventure that has to be explored. So the tip is to make a study of food and appetite. Explore cooking and food programs on television, be adventurous and experiment with what you like to prepare, eat and even share.

There is a charity called 'life kitchen' run by a cook called Ryan Riley. Its aim is to help people undergoing Chemo to be able to enact and enjoy eating. I met with two of the founders and they are very interested in our predicament they hadn't known about our problems but have agreed to work with the OPA in the future. In the meantime watch out for a BBC series called lifekitcen which is going out later this year.

Best wishes for your full recovery and a long, Healthy and enjoyable future.

Michael prendergast

PS where do you live?

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thanks for your advices.Its very hard not to think the worse sometimes and i know its a long recovery time.Probably going too well for first 10 months post op. I try to eat between meals and should like you say go by the clock as never feel hungry. Seems to be a pattern that when we have been away for a few days, i'm very cautious about eating due to dumping fears that i then do not to eat much.Hence i lose a 1lb or so and then can never put it back on. Live in Leicestershire and had my Ivor Lewis at Derby.

The slow bowel movement would worry me too too much toxicity build up for my liking definitely see a Doc or a dietitian

CJ

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Been to see the doctor this afternoon, examined me and prescribed some medicine that should help and to go back if it does not in 3 days. He reassured me and hopefully does the trick, put me on different pain killers as some can cause constipation.My Wife came with me and has been my rock for the last 13 months , so she will make sure i take my medicine. Thanks for all advice and take care.

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After repeated trips to the doctors about severe back pain and constipation i was finally sent to A&E where they found i had 2 compression fractures.After C T, MRI, bone scan was told that my cancer had come back in my spine and oesophagus. After emergencey surgery to have titanium rods to be fitted to stabilise my spine and staying 4 weeks in hospital, now awaiting chemo to try and control aggresive cancer. So after the Ivor Lewis to remove a T1 tumour, 1 CT scan and told i was clear its been a massive shock to be told this news. Makes you wonder if more CT scans had been taken or local doctors had done more earlier.

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