Clarity on Digestive Aids Post OP

Andrew

Thank you for taking the time to write me. The board doesn't have much participation lately I guess due to Covid.

Weird you say to stay away from apples as I am in the pressure/pain now and what did I just take to see if it helps? - Apple Cider Vinegar in water!! I had come across a video on youtube of a guy who is also having mucho troubles post-op and he says it helped him so I'm desperate. It hasn't done much at all.

I am scheduled for a sonogram tomorrow and just had blood tests. I pushed an abrupt surgeon to give me some attention.

I am now reading about SOD, I may have it based on the description of symptoms.

*Question - have you noticed if you get symptoms right away after eating or can they be delayed? I'm asking because i never considered myself gluten intolerant so yesterday had a nice size chunk of Italian sandwich bread. went down ok but today after eating non-wheat toast I got the crushing pressure when I have been eating this expensive (Ezekial) non-gluten bread without issue for months. So unless it's a delayed reaction from the gluten bread yesterday I am so confused.

In the last half year I've lost 32 lbs.

*Question 2 - when you say keep away from acids does that mean lemon & lime as well? I thought they turn into alkaline once ingested. My main source of Vit C.

I would like to PM you as I'm in pain, stressed and trying to handle a busy job in this condition. Thank you so much again for writing

Simone,

I hope you are starting to find a pathway through your illness. I know it will be very tricky. It is indeed unfortunate that the current times are going to provide greater difficult in doing this, at a time when you need support not added obstacles. But, I am hopeful, that in the next few months the NHS situation will improve and make it easier for you.

Although I appreciate the real need we all have for knowing what, if anything, is wrong with us it occurs to me that some sort of, medically arrived at, diagnosis would be best for you. You may need to wait for this - sorry. Whilst it may be useful to research symptoms be careful doing this, I would advise trying to keep an open mind and staying away from self diagnosis.

I hope that the following proves useful.

My experience is that once I have eaten something the issues of my illness will show themselves quite quickly, if it's something that aggravates my illness. Usually the effects start in around 20 mins to half an hour of consumption.

Unless all one eats is a single thing (the bread you suggest) one needs to be aware of all that is in, say the contents of the entire sandwich - lettuce, tomatoes, cheese - whatever, and the ingredients of every items used - for example the ingredients in the mayonnaise or salad cream.

I was told by a Crones sufferer that gravy granules have dried celery as an ingredient, and that they couldn't, under any circumstances, eat celery - so gravy granules were out. I, personally, find that certain acidic food stuffs like those within apple and orange can produce effects based upon the 'Fructans' sugar quantity and acidic nature of these acids. I cannot, as a further example, eat blackcurrants (Ribena is out - I love Ribena) but I can eat Blackberries so getting the right jam is key as any with blackcurrants is off the table - so to speak!

The most valuable thing I did was to keep a food & illness diary with dates and times of everything I ate or drank, that was ALL the ingredients too, if it was a processed food. Then anytime I got ill and how quickly/badly and - usefully other activities like DIY, exercise, stress, work I was doing close to when I got ill. (It was how I found out that I should NOT lift my arms above my head for protracted periods, bizarrely enough). This is also useful as it gives you something to do, a starting point if you will. This helps with information, and patterns and stops us felling so cornered by our illness - giving us some sort of empowerment and ability to do something which may prove useful too.

I started to see patterns, which was useful when you I, at last, got to sit in front of a specialist. The patterns seemed linked so, after diagnosis, I looked for diets that didn't include certain of the foodstuffs and stopped doing the things that I seemed to be doing most frequently, before getting ill whilst cross referencing with my diagnosis.

This was how I hit on the 'FodMaps' diet which has helped me the most. I started to understand, not only my diagnosed, but also my body's reactions under certain conditions - like stress. This was very helpful as it meant I could, not only answer detail questions when asked by consultants, but could also do something to help myself and relieve symptoms. You may also want to look into your families medical history and see if there are any illnesses others seem to have too.

I truly hope this is useful.

Kind regards,

Andrew.

Hi Andrew

Thank you for your detailed and helpful response. I'm so glad you are finally getting relief.

The surgeon called me and said she can tell by my blood tests that something is wrong and wants me to have an MRI of the liver/pancreas/bile duct region (MRCP). She is wondering if I may have a small stone going in and out of the bile duct. But isn't that how they scare us into having the surgery to begin with? That a stone could get lodged in the duct going to the pancreas and we could die? So I had the bloody surgery and one can still have the same thing happen even with the gallbladder out??!!

Can you drink any caffeine? We're taught that our hormonal system is regulated by fats and I'm not having any or very little fats. What fats do you eat?? Any vitamin supplements?

I hope I don't have SOD. I've now been reading about it thanks to you and it seems very hard to diagnose and even harder to pin down to make a blueprint for how to eat and live. It also seems permanent??

I've never associated apples with acid before. I thought the pectin in apples was supposed to be comforting to our stomachs. Also I thought I had read that citrus and acidic like apple cider vinegar turn to alkaline in our systems once ingested???

I'm now looking over Fodmaps. I thought our problem was oils/fats but you are getting help from eliminating fermentable sugars?? So confused...

Anyhow, waiting for insurance co to approve the test surgeon wants. I'll try to keep food diary but there doesn't seem to be rhyme or reason to the pressue/pain.

Thanks so much again, Andrew.

Simone - just to pick up one point in your reply but yes, unfortunately, you can still get gallstones even after your gallbladder is removed. The liver still generates bile (necessary for digestion and the removal of waste products) and this still passes down the bile duct after the gallbladder is removed. For most people it just passes through but for some people, perhaps due to the natural shape of the bile duct or perhaps if there is some scar tissue there, either from the previous gallstones or the operation, gallstones, though usually small ones, can still develop. To find the problem and identify a solution the tests your consultant wants should certainly be the next step. I hope you get those done soon but Andrew's suggestion of keeping a record of what you do, as well as the food you eat, and trying to match that with when you see bad symptoms may help. You should remember that the liver, which produces the bile, the one of the main processing 'factories' in the body and almost anything you eat or do and any medications you take can have an effect on it.

Hi Gary

So you're saying that even after gallbladder removal if a person is unfortunate enough to have scar tissue in the bile duct from previous stones and/or they just have a narrow or uncommon shaped duct which slows the smooth flow of bile, then stones can still form in the duct itself from the liver's bile production? Swell, great....geez

I hope the insurance will approve the test I'm supposed to have and show stones that can be removed and be done with it as opposed to the SOD conditions that Andrew and others suffer from because that sounds like a permanent minefield to live under....

Simone - sorry but yes. If you do a internet search for "gallstones after removal of gallbladder" you should find several articles that mention this.

Simone,

I really think and hope that you don't have S.O.D. It is treatable with surgery in many cases, only the unlucky few are incurable. These numbers are REALLY low - in the whole of the U.K population there are only 3 men who are incurable - apparently.

I was given lots of MRI's, endoscopes, and other tests with gel etc when I was getting diagnosed. I was told that the most likely reason for my illness was small gallstones (like a grit paste apparently) blocking the ducts (tubes) in my digestive system. So what you are being told sounds familiar. These tubes connect the liver, pancreas and gall bladder along a series of small tubes or bile ducts that deliver different enzymes depending on what the food needs to digest once its been given the acid treatment in the stomach. As a result many different things can cause triggers and it may depend on what is blocked for you (if anything) that may generate issues and so your triggers may be completely different from mine or anyone else - thus the diary.

I am a UK patient and was, eventually, diagnosed with a test using pressure that checked me prior to an episode then involved me eating a chocolate bar (to trigger the effect) and measuring pressure again. Most of that time I was under some sort of strong pain meds so may be a bit foggy about how and what. Sorry I can't be clearer.

I get the impression that you are a USA patient - so I have no idea how you go about getting this test sorted out. In the UK you need to get your G.P (general practitioner) to refer you to a specialist (consultant) who will then go through all the 'basic tests' (please don't think this means that there is a league table of excellence or impressiveness, its more to do with commonality). These showed my consultant nothing so he referred me to UCHL (university college hospital London) where a different specialist consultant conduct a series of more obscure tests including the test to show SOD. Phew!

Good luck with find out what it is.

Please do consider the diary as this may help a great deal. Chances are that a consultant will tell you to record things in one anyway. They may just suggest you focus on food and drink but I would recommend including exercise, stress levels, being at work, attack info (with some sort of arbitrary grading of intensity and length if you can) and so on.

Again I hope this helps. My best regards,

Andrew Stearn.

Hi Andrew

Yup. from across the pond, grateful to find this forum and grateful to you for sharing your hard won knowledge as it has me looking things up I hadn't heard of and I will better speak with the surgeon after the MRCP test (an MRI scan of the liver/pancreas/duct area).

Thanks for mentioning about the small amount of 'incurable cases'. The reassurance was good as I get fleeting images of being told I need very invasive/risky types of tests because they are having trouble diagnosing.

Food diary - It would seem optimal I guess if I ate one food at a time and waited to see if any pain reaction. When I'm in pain I say I'm going to do that right away, but when the pain subsides I am Hungry and mix things up though these days it's mainly veggies and grains. I'm craving fats but timid since last week's 14 hr pain event.

Question - Fodmaps - I thought our problem was fat? I'm not quite getting the sugar/acid connection to SOD? I understand it more in regards to IBS but not so much post gallbladder issues.

Question - Foods - I know triggers aren't the same for everyone but I'm curious - Can you drink any form of caffeine? What fats can you tolerate? - any meats? any fish? any dairy? Any particular herb/spice you frequent or conversely feel is a trigger?

How did you find that putting your arms over your head irritated the sphincterOD?

Thanks so much, Andrew.

Have a good weekend