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post #1 of 27 (permalink) Old 19-10-2019, 11:55 Thread Starter
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Short Bowel Syndrome Info

WARNING! If you are of a squeamish disposition and have no need to know the long and the short of the malfunctioning of the bowel, read this thread AT YOUR PERIL and don't complain afterwards.

It’s an occurrence more common than you’d think, and not just a result of bowel cancer treatment.
My personal experience was that the health system here gave me no guidance whatsoever as to how to handle the after effects, neither did the dieticians I was referred to have any clue at all. No one was in the least concerned about my appalling lifestyle or the fact that I'd lost 25kg in a couple of weeks.I was offered an "urgent" appointment with a gastroenterologist four months ahead. Notwithstanding the fact that I'd paid (at least my travel insurance had) more than 6000 pounds for my op Hence my decision to post for those who might be needing information on this topic.


So the medication I am taking was guided by a very experienced gastroenterologist in South Africa, and the rest of my management program by my own research, trial and error. Till I started the meds, I could only eat ham and bread, potatoes and surprisingly, curry. (Turmeric is a bowel calmative.) I had to live in nappies and I couldn’t venture more than 10 paces away from the bathroom. I was losing 2 kilos a week (the only silver lining). The dieticians were urging me to follow a milky diet which was just making it worse. I swallowed a pile of anti-inflams and flew “home” on a wing and very fervent prayers for deliverance during the journey.


The bottom line is if half your bowel is missing it WON’T work according to the way it’s supposed to.


What actually does the colon do, other than the obvious? Well without going into medical detail, it extracts water and processes waste matter in preparation for disposal from the body. Your colon was THAT LONG for a reason. Now your poop is not going to have a long enough journey to be processed properly… with sometimes devastating results if you challenge it with what, and how much, you eat.


If your small intestine is unaffected and you still have the valve between the small bowel and the colon, then at least that bit can complete its job properly (briefly, reabsorbing bile acid and absorbing nutrients). I lost the last bit of the small intestine, the valve, and the ascending colon, so my problems were compounded. If you need to know more, just ask.


Back to the colon – biggest problem is the fact that stools are going to be more liquid than they should be, with understandably distressing consequences. How to overcome this? Firstly do not limit liquid intake as that will affect your kidneys, and won't help. If you drink plain water your kidneys process it as a pure liquid not a food, so better to drink plain water in preference. The bowel extracts water from FOOD, including “adulterated” water – as in sparkling, tea, coffee, cooldrinks, fruit juice etc.


There’s medication to slow down transit time in the bowel, allowing more water to be taken up by the body. There’s codeine phosphate 30mg. I took 1 a day for more than 10 years and I was not addicted. My gastro angel says mountaineers take up to 8 a day, because it’s just not a great idea to get caught short climbing Mt Everest. My philosophy was the only thing I was addicted to was not having the big D. Now I take Loperamide, only 1 pill in the morning, but dosage can go to 3 or 4 a day, but you get a very dry mouth on a high dose. Sometimes, if I’m not going to be close to a toilet on an outing, I take an extra Imodium Melt/Instant when going out.


You can also use preparations that give bulk to the stool. A kind of 3-D blotting paper. I take NORMACOL, available without prescription. Not to be confused with MOVICOL which is a similar product but for constipation. NORMACOL, as the name suggests NORMALISES the stool consistency. I buy it loose in a box in SA, but it is available here in sachets. I take about 2/3 of a sachet after dinner and if I have a big meal at lunchtime then I will take another dose then. My symptoms have eased over the years so I don’t need so much. There are other bulking agents available but this is the one that works for me.


Now for the squeamish bit. You may suffer from “bile acid malabsorption”. If bile and fats arrive in the colon unabsorbed the result is irritation and diarrhoeia that’s very watery, or slimy, lumo yellow and very smelly, lots of wind. It has a special name. The product to take for this is colestyramine. It works brilliantly. It’s designed to “wrap up cholesterol” and send it on its way, so as a medication that’s its primary use. It does the job for bile acid in the same way. I use one a day after dinner – again another after lunch if I’ve challenged my bowel with food type and quantity. I also take 1omg omeprazole for GORD which also limits amount of bile acid produced. A 2nd dose is good too if I've overdone the fatty food.


Other good habits:
Don’t eat too big a meal at one sitting – graze all day. Variety on the plate is good as a big pile of one thing doesn't help. Cereal/porridge for breakfast and coffee. A “bun” for mid-morning coffee time. A lunch time sandwich works well. A cake or an ice cream (when on tour) in the afternoon and a small dinner in the evening. (Hardly an approved diet regime but it works for me.)


Consume a fair quantity of high fibre veg (beetroot, carrots etc) and long chain carbohydrates (e.g. oats. French ‘Tradition” baguettes are a joy in my life). Low fibre white carbs, e.g. spaghetti, are not helpful, but white rice works well for me. Fruits are not a problem in reasonable quantities (berries, deciduous fruits, apples – cooked or fresh. Just leave out prunes and dried Greek figs.


Keep meat consumption to small portions. Ham and similar work for me.



AVOID (my personal list). “Moving” veg (cauli, cabbage, courgettes, asparagus), windy veg (peas, beans, etc)., watery foods like soup, stock cubes and artificial gravy (esp beef flavour) containing yeast extract even if natural,



BIG NO NO – E621 monosodium glutamate as a preservative – READ labels. You even find it in tinned Spanish olives. I think they put it in Coke too. You will recognise it when you hear yourself “say” - mmm this is really delicious and your tongue zings with pleasure!



Milk was devastating at the beginning – so I went on to Lactose Free (fresh or UHT) and now I can cope with the odd cup of coffee with ordinary milk. No too much cream, neat or in cooking.



Seeds and seed oils – esp. sunflower. I’m fine with maize oil, olive oil and rapeseed oil. Tree nuts are fine.

More than one fried item in a meal. Fish OR chips, poached eggs with my grilled lean bacon.



It becomes a way of life. I can eat cake, biscuits, chocolate and ice cream, so all’s good with the world. Sure better than the alternative. Just ask if you'd like any more information.
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Viv

"When I was 17 the boys used to call me "Coke-bottle-legs". Fifty years later, they are still like Coke bottles. Sadly, the 2 litre version!"

Last edited by HermanHymer; 19-10-2019 at 12:01.
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post #2 of 27 (permalink) Old 19-10-2019, 14:28
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Thanks Viv

We will introduce “new” foods slowly , one at a time , but not yet

At present it’s a bland diet for both of us , I just supplement it with salad

He says he can have porridge and had it in the hospital so I’m thinking I can poach fish in milk which will give a sauce to make a fish pie

At present he prefers a soft boiled egg with a piece of white bread toast for breakfast , and eats very little at a time

He had only a stone to loose and I guess he will have soon lost it

Hard to tell as he is still very bloated , the surgeon said that was normal and it takes some people a long time before it settles

Still trying to get him to take codiene tabs which were prescribed for pain relief , he had such a bad experience with constipation following his melanoma surgery

But as I pointed out I doubt he’ll have that trouble at the moment

You are right there is very little guidance on diet post bowel surgery , which given the prevalence of people who have and will have bowel cancer is surprising

Keeping a diary of food eaten at the moment but as yet his appetite isn’t that good

Relief from the bloating would help , I read on a medical site that activated charcoal could help so we will check that with the medical profession if it doesn’t ease soon

Sandra
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post #3 of 27 (permalink) Old 19-10-2019, 18:03
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Thanks Viv for a very informative post. A relation has just gone through an op for bowel cancer so might find that very useful.

Jean
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post #4 of 27 (permalink) Old 19-10-2019, 20:30
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No he won’t take Codeine which is prescribed for pain relief

He is managing to go to the toilet , a little, after the night explosion

But codeine impacted him and caused overflow Following melanoma surgery

And he’s worried that maybe thats what’s happening now although he has only taken it in hospital

He should be so lucky To be constipated I’ve told him

But joking apart it is a very sensitive time

So steady with diet , plenty of rest and we will get there

He needs a daily injection of anticoagulant to prevent blood clots and hates injections

But I’ve refused to do it

It’s like a diabetic injection of insulin

And he’s giving it himself

And doing it easily

Now we just need to get beyond over cooked carrots swede and mashed potatoes

Beetroot , well we normally juice that, or make a borscht

Alone without onions etc ?

Well I’m not sure

I’m also not sure about juices

There is no fibre in them and I use those to fight against his melanoma, as he can drink a multitude of fruit and veg as well as eating it

And so far maybe it’s helping

A bit out of my depth at the moment

Sandra
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post #5 of 27 (permalink) Old 19-10-2019, 20:34 Thread Starter
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It'll be worth it if I save even one person the misery of not being able to cope. It's now 8 years since I nearly died from my bowel blockage, caused by two undissolved calcium tablets trapped in a kink in my radiation-fried intestine and I'm in control of the bu**er, thankfully!! That's not butter, BTW.
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Viv

"When I was 17 the boys used to call me "Coke-bottle-legs". Fifty years later, they are still like Coke bottles. Sadly, the 2 litre version!"
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post #6 of 27 (permalink) Old 19-10-2019, 20:41 Thread Starter
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The odd bit of onion here and there shouldn't be a problem, but not in "liver and onions" quantities. Whatever the issue - soluble fibre and more soluble fibre is the way to go. (Not insoluble fibre like all bran! No, no, never it scratches the lining!)
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Viv

"When I was 17 the boys used to call me "Coke-bottle-legs". Fifty years later, they are still like Coke bottles. Sadly, the 2 litre version!"
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post #7 of 27 (permalink) Old 20-10-2019, 08:09
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My son in law suffers from Crohn's disease. It is an inflammatory bowel condition that is thought to be hereditary. His diet is recommended to be everything that ours is not. Fibre is not good for his symptoms so he avoids most vegetables and wholewheats etc. He is six feet two and filling him up is a bit of a nightmare! It is, potentially, life threatening and flare ups can mean a hospital stay. People often lose part of their bowel and so I am following this with interest. His treatment involves daily, self administered, injections.

I was interested to read about Coke and monosodium glucomate. He drinks a lot of it Being his mother in law makes it difficult to say anything directly to him but I might mention it to my daughter.
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post #8 of 27 (permalink) Old 20-10-2019, 14:53 Thread Starter
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Quote:
Originally Posted by patp View Post
My son in law suffers from Crohn's disease. ....

I was interested to read about Coke and monosodium glucomate. He drinks a lot of it Being his mother in law makes it difficult to say anything directly to him but I might mention it to my daughter.

I can't say categorically that Coke contains MSG as no-one knows the recipe. But it does have the same undesirable reaction on me, and I get that same "mmm... zing on the tongue" payback.
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Viv

"When I was 17 the boys used to call me "Coke-bottle-legs". Fifty years later, they are still like Coke bottles. Sadly, the 2 litre version!"
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post #9 of 27 (permalink) Old 20-10-2019, 15:04
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Surely the recipe should not be secret if it is being sold to the public? How do people with allergies cope?
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post #10 of 27 (permalink) Old 21-10-2019, 10:28 Thread Starter
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It's legendary that Coke recipe is a secret. No-one in the manufacturing process knows the whole thing, the detail for the manufacturing process is split so the left hand doesn't know what the right hand is doing/using, so the story goes...
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Viv

"When I was 17 the boys used to call me "Coke-bottle-legs". Fifty years later, they are still like Coke bottles. Sadly, the 2 litre version!"
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