Weight Loss

[MFH28]

I’m really struggling with my weight at the moment. I’m finding it very difficult to increase. I seem to have developed an issue regarding consumption of fat, as it has an adverse effect by going straight through me. Has anyone one any idea how I can increase weight without consuming too much fat?

[FKM100]

I'm in a somewhat similar situation. I've just had my op and am finding fats rather difficult to manage, although I'm hoping this will eventually improve. Basically, I have been concentrating on high-carbohydrate foods, like pasta, rice, potato, etc, even though I can only eat them in small amounts. I found this article helpful:

livestrong.com/article/2744...

[MFH28 in reply to FKM100]

Great thanks for the link, I’ll have a look.

MFH

[Mauser1905]

Congratulations👏 on 8 years + post oesophagectomy. Well done.

Before delving into suggestions etc al, can you please confirm if you haven't lost your weight significantly lately, lesser than your sustained new normal range? If so have you got in touch with your GP already?

If not already on Creon enzymes, this can help digest fatty foods.

If not already in Forceval tablets, please do ask for this one on ongoing prescription from your GP.

If long time due your bloods needs to be checked for any other conditions.

My understanding is as its 8 years since your surgery, you should have very well established food and drinks itinerary.

Very very handful survivors of oesophagectomy ever gain significant weight down the line, not common though. Hence counter question to ask what was your postsurgery new normal weight and why you concerned to gain more?

In general less acid, less stomach space, reduced or compromised nervous system linking between interconnected organs, including pancreas and liver amongst many others; can affect digestion of fatty foods.

And persistent attempts to try such foods may prove counter productive to desired outcome, because of diarrhoea dumping induced persistently. Unless something else requiring attention like a comorbidity developing etc!

[MFH28 in reply to Mauser1905]

Hi Mauser

Many thanks for your very helpful advice.

My ‘new normal’ weight has never really been established. Very very gradually my weight has been reducing subsequent to the op. My pre-op weight was 14.5 stone, I’m now under 10.

I’ve suffered bouts of diarrhoea throughout those 8 years and despite regular visits to my GP we have not been able to stop it completely. He has prescribed Loperamide which I take daily and that does give me a certain amount of relief. He also regularly took my bloods which have been fine.

In terms of comorbidity, I was concerned about that so I took the following action:-

The above Surgery has now closed and I am with a new Practice. Several months ago I started loosing more weight and my motions became very loose and oily.

I had a phone consultation with my new GP who arranged a 2 week emergency referral for a full CT scan and bloods check which was performed on 18/5 but to date I have not had the results. Despite two follow up calls to the GP and the Consultant’s secretary they promised that the analysis of the scan will their priority, sadly nothing has been heard!

In terms of my dietary arrangements, I‘ve tried constantly to eliminate certain foods, in particular white bread. I tend to stick with wholemeal now but even so I’m still loosing weight.

[Mauser1905 in reply to MFH28]

One quick thing. Are you taking any iron supplements, if so reduce the dose or stop these as these cause loose stools.

Will come back later. Want to do some painting now, while I am out of "out of breathe".

[MFH28 in reply to Mauser1905]

No, no iron supplements

[Mauser1905 in reply to MFH28]

I think GP won't be of any more help than prescribe whats been given by dietetics in

Nothing else underlying.

You require urgent referral to hospital dietetics dept to investigate and sustain your weight and along with plan to gain healthy weight for your case.

Also worth sending a note to your cancer nurse specialist of the history if not already made known. Also ask your GP for referral to hospital GI team for persistent weight loss post surgery.

Ideally GP won't be able to get to the root cause as they don't have enough experience in dumping syndrome nor they have sufficient time to do research.

How aware are you of dumping syndrome and its triggers associated with your diet?

Can you try quaker oat so simple protein porridge? But triple the water instead of milk and increase the microwave time by double ish. Use your judgement to boil it and drink it. If this holds you good then it will hydrate your body as well give enough nutrition meanwhile you having runny stools.

Please avoid fat, fried foods.

[MFH28 in reply to Mauser1905]

Scan results have revealed nothing untoward going on. Phew!

So it looks as though my diet is probably causing the issues I’ve been experiencing. I’m looking to make a GP appointment with a view of seeking diet related advice.

Thanks for you comments.

MFH

[Mauser1905 in reply to MFH28]

Thats good news in scan side of the things. GP should be able to refer you on priority to hospital or community dietetics department. Finding a good dietitian having in depth knowledge of the issues and treatment experience for an oesophagectomy survivor is very rare.

You will need to help yourself by making a diary and eliminating the trigger foods etc. Offcourse interim nutrition provision should be helped by special supplements prescribed for you by dietetics.

Please ask for forceval prescription for yourself from your GP. Thats multivitamin tablet. Also if blood results not already in ask for B12 injection.

Also suggest having a go through the forum past posts on the symptoms and other people's management ideas etc al. Really great help.

[Animalmadwoman in reply to MFH28]

My husband has all of your symptoms. He went through a very bad couple of months where everything he ate just went through him almost immediately, along with nausea & very bad cramping. He had blood tests, stool tests , ( checking for bacterial overload, a specific test) but all ok except that the blood test identified very high iron. He had been taking Forceval capsules , so GP told him to stop & replace with a iron free multivitamin .

Things settled now , but still gets the cramping & nausea.

He is only 18 months post op

but like you pre op 14.5 stone now 9.11. He looks extremely thin mainly due to muscle loss after 5 months on a ventilator in ICU .

Good luck & hope things settle down soon.

[MFH28 in reply to Animalmadwoman]

Thanks very much for your comments. I had a blood test but I am unaware of the outcome at this stage. I’ll be speaking to my GP soon and will see what he suggests in terms of vitamins and Iron.

MFH

[Fizzy35 in reply to Mauser1905]

Hi Mauser 1905 speaks with a lot of knowledge and common sense so to those who May be new to this site in listen

Along with the suggestions I would suggest to get a check for Pancreatic problems with continuing weight loss as this definately will cause oily /FOUL smelling /floaty’ stools. This can be rectified by medication most of the time to take during / before food

And although almost everybody (including a lot of health professionals unfortunately) will continually say to get lots of whole milk / butter/ fats into your body to increase weight the pancreas HATES fats and it won’t matter how much or what you eat you will continue to lose weight as your body will react to get rid

Also make your dietician your new best friend.

They have a wealth of suggestions and supplies they can offer with weight issues.

Apart from being fitted with a feeding tube if necessary which can run slowly overnite to give 1300/1500 calls without being too intrusive / to having Nurti milky or fruity drinks of 300 calls each two or three times a day/ or food additives/ etc.

Finally your Pharmacist is another ‘to go to’ for advice best friend by calling in if you are able especially at the moment or by phone

Don’t forget they have spent YEARS studying and learning the outside ins of all medications and interactions of drugs

All the above are currently seriously overworked right now but just add your name to whichever you need and they

WILL help

And remember the OPA website has great literature / suggestions/ and you can always be advised where you can confidentially see or phone a member.?

All free you just need to ask

Best wishes to you all dealing with OC at what has become an even more difficult time

Fizzy35

[liz_crisp]

Have you tried codine phosphate to control the loose stools. It can help I am ten years down the line and when I get into a cycle of loose movements I can’t stop I take one and if needed more. But normally never more than 3. I tend to stop eating when it happens and then just have a slice of toast or a little cheese and crackers, boiled eggs spread throughout the day. I drink hot water with fresh ginger, or peppermint cordial. I try to give my gut time to calm down and get settled and then eat a little at a time, maybe rice and peas with a little salmon flaked in to it. Till it feels better. Creon did help for a while to get my system absorbing fats. I lost 3 stone and have put back 1 and a half over 10 years. With some ups and downs. I am now at my heaviest since surgery but still only a size 10.

Congratulations on 8 years. Do push to get it sorted and check ed out. I find if my routine changes or I go away it often plays havoc with my digestion Lizzy

[MFH28 in reply to liz_crisp]

Great thanks a lot for your advice. It’s a long road we are all on!

Con’grats on 10 years, we’ll done.

M

[Fizzy35]

Well the pancreas HATES fat and is something to be checked out

EVERYBODY tells you to gain fat you MUST eat full fat cream/ butter/ milk/etc

But the pancreas will just chuck it out

So it doesn’t matter what you eat you will NEVER have weight gain if this is the case

You can be prescribed enzymes to take with EVERY SINGLE THING you eat in various quantities according to what you are currently enjoying

Things to look out for are REALLY REALLY smelly stools/ floating stools/ white or yellowish stools

But would STILL ask anyway for a test.

Also you can have drink supplements prescribed which give around 300 calories extra each small drink

(In a milk shake mixture or fruit juice mixture) to help your weight.

Speak to your dietician ASAP

Also the OPA have FREE literature about this giving lots of nice recipe ideas which you should try

Best wishes

Fizzy35

Hope some of this helps

[MFH28 in reply to Fizzy35]

Hi Frizzy

Many thanks for your advice.

Whilst I am relieved that following the scan there is nothing untoward going on, I realise I need to seek help elsewhere regarding the weight issue.

I have now spoken at length to my GP who has referred me for Gastroenterology and Hepatology examination, however long that may take!

I have also asked my former SCN at Maidstone Hospital for dietary contacts in particular for folk like us who’ve undergone this operation.

Thanks again.

M

[Golfer51]

I struggled to put weight on and found that some of my ‘go to’ food was cauliflower cheese or Mac cheese. Seem to be able to digest them more easily. I still have days when my pancreas packs up and everything just goes through me but I’m now 16 months post op and have put on around half a stone from my lowest weight.

[Fizzy35 in reply to Golfer51]

Well done you

Think one of the secrets is to try a little of what you loved (and indeed what you hated!!) and see how your body copes and your taste buds react

If not a happy experience log it then in a month or two try again because things seem to change constantly

( which is REALLY difficult for us carers and I mean by that wife/ husband/ partner/etc) thrust into a whole new world too !!!