Oesophageal Patients Association
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slow motility

Hi,

Dave has been for his 7th endoscopy/stretch since his IL in January. Physical recovery really good but his eating has been just awful ever since surgery.

The first few endoscopies showed he needed a stretch, but the last 2 they haven't been able to do the stretch as his stomach has been too full despite being 18 hours since eating!!!! Dave is suffering from trapped air, reflux ad nausea/sickness more or less constantly, and can only take really small meals. (Not even a quarter of a normal dinners before it makes him ill. Weight is presenting a problem as the food isn't going anywhere to enable him to eat little and often so calories at an all time low. Does anyone else suffer from this?

The hospital want him back in a week following a 24 hour fast to see if they can find out why. I meant to say he does take Gaviscoon and Metaclopromide, but they have taken him off Lanzoprazole as he is allergic to it.

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Excuse the personal question, but do his bowels work OK?

Trapped wind can be a real pain.

Metoclopramide can help sometimes, but not always, as you know.

Do the problems arise whatever he has to eat, or might changes in diet make a slight difference?

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Thanks so much for the reply Alan, and yes his bowels work fine thankfully.

The problem is more food not moving at all it just sits there, so air can't move up and traps in his chest(stomach!!) Because he is so full all the time the bile is constantly in his throat making him nauseas and at times, sick.

Obviously snacking is easier as quantity/bulk, however small of a "proper" meal is a real issue, and again makes him sick. the problem has got progressively worse over the months, not better and we can't understand why. The hospital can't understand why the food is ta king over 24 hours to clear one meal either. Our worries are all he can eat are biscuits, crackers and crisps so not remotely healthy and not a way he wants to eat either.

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I really do not know, and the doctors seem puzzled at the moment as well, don't they. I wonder if it is something to do with the vagus nerve; perhaps not triggering peristalsis muscles further down in the system? Something similar to gastroparesis? But that is real idle and unqualified speculation on my part. They should be able to work out what is happening from the tests.

I know biscuits etc do not seem healthy or attractive, but if the system works with them, then that might have to be the price for a while to get the digestion working better, supplemented with vitamins and minerals as appropriate.

If it is definitely bile, there should be some medication (like cholestyramine) that could help with it, and there will be details of the surgery that might account for the bile reflux. Has he been tested for bile reflux? Is it in the immediate period after stopping the lansoprazole?

Taking liberal amounts of Gaviscon Advance might make a bit of difference perhaps?

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Thankyou Alan. We think it's to do with the vagus nerves too.

Dave hasn't been tested for anything, so may have to ask when he goes back in, or phone the specialist nurse and ask advice. Thanks also for the information on cholestyramine, again it may be worth asking the specialist.

It's all so trying and testing, and after this length of time and positivity, we're starting to feel positively ground down by the not moving forward.

Thankyou for taking the time to reply, it really is appreciated x

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Hi have you spoke with dietician. Mine is sending me for a hydrogen breath test to see if i am suffering from bacterial overgrowth which apparently causes wind gas and not breaking down food properly. Also had a stool test to show if i have enough enzymes from pancreas to break down food. My weight is stable now so no prob there. I do tend to snack more than eat proper meals. I suffer more when eating a meal with reflux and wake with bile taste.

Might be worth asking about.

Good Luck

Debbie

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Thankyou Debbie, will ask to be referred back as we were signed off from the dietician in April.

Thankyou for your help, hope your test goes well xxx

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I had my LI in 2015 and several dilation, usually every 6-8 weeks. I was 200 lbs prior to surgery but now can't get behind 172 lbs. I can't eat enough to gain weight. I even take boost VHC (very High Calorie 580 cals, per serving. I must eat small meals as I fill up fast and depending on the meal it takes forever to digest. Acid reflux comes and goes but if it does occur it is sometime during the night. When it hits the burn keeps me up the rest of the night.

I have no answers just sharing mutual problem

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Thankyou for sharing Nuxperience, there seems no real way round it does there?

I suppose everyone's symptoms are different and unique to them. Still hoping the hospital can make a few suggestions we've missed. x

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Post op Dave's hospitalisation was lengthy due to complications and his jeg was in place for a long time.......I am sure the hospital was correct in surmising that , as a result of the enforced stasis, his intestines had just gone to sleep or, more properly, forgotten its routines.

The investigation of his Pyloric sphincter has not revealed any anatomical abnormality.

Further dilations may achieve nothing. But an harmless experiment would be a Botulinum injection to paralyse the ring muscles and keep the sphincter open and draining down into the Duodenum. If this is proves to be of help than at least a partial solution has been found. This solution can be made permanent with surgery.

Assuming the above is unsuccessful why haven't his innards come to yet?

A reasonable analogy might be like the head accident victim who is in a coma for months and then suddenly an eyelid flickers and consciousness begins to return..

However recovery is not straight forward in that many behaviours have to be re-learned in whole or in part; usually involving physiotherapy.

My (unqualified) hunch is that the gut behaves similarly. After all the gastro-intestinal tract has a brain of its own -- it is about the size of a cat's - and cats ain't stupid!

This brain is independently responsible for the complex and subtle operation of the intestines throughout the day and night. It does report to the head brain but so far science has been unable to find out which of them is calling the shots and when and why.

IL surgery is a massive shock to all systems in our bodies. It is possible that too many branches of his Vagus nerve were cut during surgery and so parts of Dave's remaining organs have become isolated. The greatest single facet of GI function is rhythm - a wave signal spreads from top to bottom of the entire 8-9 metres via electro-chemical diffusion in the nerves. It is this function that needs to be kick-started but if the telephone line has been cut then the message will not get through.

How is Dave's swallow? If there is peristalsis in the throat and remaining portion of the eosophagus then that is a very good sign.

Moving to the other end how are his bowel motions? Form and regularity? It may be that his diet is insufficient so this should be one of the first points of attack. Is there a food stuff that can get past the non-functional stretch which would nourish the bacteria which ought to reside in the large intestine (colon) and, literally give the muscles there something to get hold of and squeeze down. It is also highly likely that the normal, healthy population of bacteria has been wiped out by antibiotics - another point of attack.

What could do the trick? I would suggest good quality fresh soups.There are umpteen tempting flavors available from all supermarkets. They might trickle through, particularly if sipped slowly throughout the day. They will ensure hydration, providing plenty of calories with sugar/salt/protein/carbohydrate and crucially both soluble and insoluble fibre. Stir in a probiotic yoghurt and a comprehensive multi-vitamin. Allow 6-12 weeks for a rejuvenated Hubby.

Something else which I have found helpful is massage, of a specialised kind. After the Gastric pull-up the Pyloric Sphincter should lie just to the right of the chest centre line, under the bottom rib. It can be pretty tender! If he can pluck up courage press gently with a finger tip and apply pressure with a rotary motion. With luck you may hear a gurgle as the sphincter relaxes. For me this relieves trapped wind. A healthily functioning sphincter will slacken and let pass about one dessert-spoonful every one second. This is why the normal stomach takes so long to empty after a meal - and the period varies according to the content of the meal - very clever that cat's brain.

One last clue you could look out for. When he has reflux is this sudden, even violent, occurring some 2-3 hours of going to sleep? If so, surprisingly, this is a very good sign since it indicates that a vital function is taking place on cue. That function is the MMC, the migratory myoelectric complex.It is too complicated to explain here but you can read about it here: vivo.colostate.edu/hbooks/p... If this mechanism is intact then it is reasonable to hope that all other digestive functions can return to normal in due time.

I hope you are following all other good practice such as allowing at least 2-3 hours minimum after the last meal and retiring to bed, raising the head of the bed at least 6 inches, etc etc.

Please let us know if this has been of any help.

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Thankyou so much gutless wonder for your really informative reply, and for the time it must have taken to type it all out!!

Dave has found it really helpful, and will definitely be trying the massage as wind/air is a problem for him.

Sadly the reflux isn't confined to nights, although as you mention does come after 2/3 hours at night which I guess is a good sign. He tends to suffer with it constantly on and off, which we assume mest be because of his constanrly full stomach He's tried Gaviscon and Ranitidine and also tales Metoclopromide none of which help, and has stopped taking Lanzoprazole on instruction from the hospital as he was allergic to it.

Thankyou again for taking the time to reply, we really do appreciate all answers and suggestions.

Hope you are keeping fairly well. xx

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Hi Lynn , so sorry to hear about Dave too. A chap Tony was recently talking to is about 5 years post op and still has problems now and again with his ‘stomach ‘ whereby the food just lays there and ferments ...so it’s that in which he has stretched to help. Don’t know if that’s something he could have ?

Tony came out after being kept in all weekend following his 3rd stretch in 7 weeks ... now the tear has healed ..post op Chemo has begun. He’s still having swallowing issues so soon again , but at least we know that he can have yet another stretch done whilst on Chemo! His weight had dropped to 9st 9lb after always being around 12st 2 he looks anorexic and worries the life out of me , but you just have to wipe away the tears and carry on don’t you. It just HAS to get better ......eventually...that’s all I pray for ! All the best ,hope he finds things easier very soon .

Hugs Deb x

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Thanks Deb, and I'm sorry to hear Tony is still having problems. I hope once his chemo is over things begin to improve for you both.

Dave had 3 days last week of things being quite good and eating reasonably well. What a difference it made to us both ~ then BANG off we go again bile reflux all day constantly, sickness, inability to eat. It's beginning to have such a huge impact on us both and our relationship, and something we hoped would have sorted itself out by now as it will be 12 months Jan 3rd. I am so grateful to have him, but this way of life is really only existing to a certain degree, not a grumble honestly, just frustration!!

Give Tony our best wishes and hugs to you both xx

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