# Short Bowel Syndrome Info



## HermanHymer (Dec 5, 2008)

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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## aldra (Jul 2, 2009)

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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## jiwawa (Jun 22, 2007)

Thanks Viv for a very informative post. A relation has just gone through an op for bowel cancer so might find that very useful.


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## aldra (Jul 2, 2009)

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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## HermanHymer (Dec 5, 2008)

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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## HermanHymer (Dec 5, 2008)

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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## patp (Apr 30, 2007)

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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## HermanHymer (Dec 5, 2008)

patp said:


> 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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## patp (Apr 30, 2007)

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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## HermanHymer (Dec 5, 2008)

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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## pete4x4 (Dec 20, 2006)

I have just had bowel cancer surgery and have been put on a strict low fibre diet or as I prefer to call it a great diet. it is alll designed to slow the digestive system down to allow the stomach and small intestine to absorb as much as possible.
I agree Grazing is the way but I have a temporary stoma bag so slow digestion is essential.
My diet allows no veg other than root veg ie below ground stuff.
No salad but peeled cucumber is ok and peeled red pepper.
White bread and only white bread
Pasta, rice etc just not the healthy high fibre stuff.
Any meat I want, Roast Lamb was great last night.



Bacon sarnies are the best, fried anything chips all good.


I have just found out that CoCodamol screws up my stoma, output drops considerably so not doing them anymore


Using this unhealthy diet results into a paste going into my bag which is exactly as it should be. I supplement the diet with Isotonic drinks such as Lucozade Sport drinks for some of the missing vitamins.


I do expect my bowels movements to be different once my stoma is reversed but I intend to stick to a lowish fibre diet to start with.


NHS has a huge amount of diet info out there for low fibre stoma stuff which may well be relevant for other bowel symptons.


Pete


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## JanHank (Mar 29, 2015)

Just like my Mum had, but hers was not temporary.
I hope all goes well for you Pete. XX


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## patp (Apr 30, 2007)

My bag of dog food lists every single ingredient!


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## aldra (Jul 2, 2009)

Fingers crossed you are now over the worst Pete

Albert is following a low fibre diet but gradually introducing a spoonful of different veg and keeping a diary , but of course he doesn’t have a stomach 

Aren’t you allowed apples and pears and seedless fruits Pete ?

Sandra


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## jiwawa (Jun 22, 2007)

pete4x4 said:


> Any meat I want, Roast Lamb was great last night.
> 
> Pete


I'm surprised about meat Pete - I thought that was high fibre. Tho it does take forever to go thro you.

Hope you continue to improve.


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## pete4x4 (Dec 20, 2006)

Meat has to be cut very small and chewed a lot but I have no restrictions, fruit is allowed as long as it is peeled so apples, pears yes as long as they are peeled. 



Biggest no no is onions unless finely chopped and mushrooms again finely chopped big mushrooms block the gut


Bananas are my friend.


My biggest dissapointment is no mixed fruit so thats no mince pies, Xmas cake or pudding. Big Sad Face!!!


Sorry for mentioning Christmas


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## Pudsey_Bear (Sep 25, 2008)

Thanks Viv, that was an education  I've had bowel problems of a similar nature, but they gave me Loperamide early this year and I am more or less back to normal, I was also informed that the bladder and bowel work in unison so it has helped with that problem also, I occasionally have to take two if one isn't firming things up, but mostly one a day is fine the next day.


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## HermanHymer (Dec 5, 2008)

Yes, trial and error is the order of the day, every day. There are various versions of the disability, which all need different solutions. Wishing you all trouble-free movement!!!


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## aldra (Jul 2, 2009)

Well we are now on a “ normal” diet

He keeps a diary so far so good 

Small spoonfuls of new veg 

Mushrooms, onions, garlic whisked in the food processor prior to cooking 

Yet to try juiced fruit and veg

Sandra


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## aldra (Jul 2, 2009)

I’m hoping we are not progressing to fast

He seems fine 

I secretly worry that maybe his internal stitched bowel will burst open. 

I know it’s stupid, maybe

I say nothing to him 

But you lot are not going to tell him of my worry are you ?

Sandra


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## patp (Apr 30, 2007)

No, we won't say a thing, Sandra.

I must admit I wondered if you were progressing a little too swiftly???


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## aldra (Jul 2, 2009)

Well I’m guided by him, Pat 

He eats a little of what he fancies 

I just make sure that things are cut up fine, skin the peppers, peel the mushrooms and whisk them fine , chop a reduced amount of onion in the food processor to flavour meals like shepherd pie 

The actifryer comes in handy as it needs little or no oil 

No pastry or fried foods, no pulses beans ect 

I check the fibre content of everything to keep it low

And I guess at the end of the day it’s up to him whether he eats it or not 

The diet sheet he was given said that it was not a balanced diet so shouldn’t be followed for long on discharge

Add other food slowly and keep a diary of everything eaten

Which he is doing and it seems to be working ok

He’s going to the toilet ok , obviously not solid but certainly not urgently 

His bloating is much reduced and he rarely takes painkillers 

So fingers crossed it continues to be well

And I continue to worry in spite of the fact it seems to be going well

We should know the full path lab results in a couple of weeks whether or not it had entered the lymph nodes

And if further treatment is needed or not 

I should remember more often my favourite line from Psalm 46

..... “Be still, and know that I am God “

Sandra


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## aldra (Jul 2, 2009)

Having said that Pete,

He says he is having a mince pie

On his head be it 

I hope your reason for not having them is the stoma 

My fault for telling him you said you can’t have them , reminded him it’s nearly Christmas !!!

Sandra


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## pete4x4 (Dec 20, 2006)

Yes my stoma does not like fruit, bowel works too quickly so you do not get any nourishment from the fruit. 

Dried fruit is particularly bad I have been told to avoid it although a handful of Jelly babies before you eat helps slow it all down. 

Essential for alcohol apparently.
Yet to try it.


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## aldra (Jul 2, 2009)

Jelly babies and alcohol?

Go for it :grin2:

A little of what you fancy Pete 

And after all who drinks alcohol for nourishment ? :laugh:

Sandra


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## HermanHymer (Dec 5, 2008)

pete4x4 said:


> Yes my stoma does not like fruit, bowel works too quickly so you do not get any nourishment from the fruit.
> 
> Dried fruit is particularly bad I have been told to avoid it although a handful of Jelly babies before you eat helps slow it all down.
> 
> ...


I must try this tip!


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## aldra (Jul 2, 2009)

Buying them in Viv 

Ready for your next visit 

Jelly babies and wine sir? :grin2::nerd:

Sandra


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