“If I knew then what I know now.” (**)
I want to state something up front. I am NOT a nutritionist. I am NOT a doctor. I am NOT any form of healthcare professional.
Now with that being stated, what I am, is someone who tries to find solutions to problems in my life and that of people, and pets, I care about. I educate myself about the situations I encounter, research deeply, as many of you do, in order to utilize this knowledge and to speak as intelligently as I can to relate information that can help others.
I am writing this for one purpose. I wish to provide some information to someone who might be in the same situation as my family was and is looking to find possible answers of their own.
**APRIL 2020 – a new article has been posted that can explain many of the issues that Whipple Patients are experiencing in regards to underlying undetectable nutrient deficiency. In particle B12 and Biotin along with their connection to Iron deficiency. The article explains the metabolic processes involved and why it can be a cornerstone of symptoms or even the threat of recurrence or metastasis. Deficiency of these nutrients can form the basis of Pacreatitis attacks, skin, digestion, psychological, neurological, sleep issues and a host of other problems. If you would like to read that article first you can use this link to bring you directly to it: Neurological and Autoimmune Reactions and Diseases : Vaccine and Medication Side Effects – Is This The Common Cause?
(** and as I find out new things…. This post has been updated with information since its original posting in March of 2017. I have added things based on questions people have asked, and additional information I learn along the way from questions, comments, and new research from people I encounter within the Whipple Surgery Survivors Group on FaceBook. So if you are new to reading this, please take the time to scroll/read ALL the way down to the very end. If you are rereading this, there have been things inserted into the original text that might better clarify sections and bring new things to mind for people to help their own situation.)
(6/17/18 – I am planning on updating this post with much more significant information, but, it takes some time. This may sound odd, but I have written another post that concerns neurological and GI issues in Pets that is all related to B12 – ALL of the information for the post was taken from Human Medicine. The 4/26/18 update toward the bottom of the post (along with the B12 section in the middle of the post) contains a GREAT DEAL of information that could assist GI patients. It discusses organic acid metabolism and why liver levels can elevate and what can cause pancreatitis. Again – it is ALL HUMAN MEDICINE. I FIRMLY believe now that problems with gastroparesis after surgery are due to B12 and BIOTIN insufficiency/deficiency – it causes problems with the autonomic nervous system (peristalsis). It also explains why muscle wasting occurs in particular because of these deficiencies. That post is entitled PETS: Does DM (Degenerative Myelopathy) and other Neurological issues like Seizures and Doggie Dementia, actually start in the gut? Are we missing a diagnosis based on outdated and improper assumptions? This information could be vital pre and post surgery, especially in continuing to fight any chance of re-occurrence and strengthening the immune system.)
Many of us have stated that line “if I knew then what I know now”. Hindsight is 20/20. So since I just came across some information that brings that line to the forefront in my life, I wanted to pass it on.
In April of 2015 my sister had Whipple surgery for ampullary cancer at the age of 68. (Stage pT4N0) Though it was not specifically pancreatic in nature, and no spreading to the pancreas was involved, it is essentially treated the same and therefore requires the whipple procedure. (as a separate note her daughter-in-love died 1.5 years before this of Pancreatic Cancer. Our great aunt also died of PC)
She was one of the few to end up with various complications after surgery such as infection and delayed emptying (paralysis) of the stomach and the total loss of desire to consume food. Her taste buds, and her smell were affected for months after surgery. In fact, she was on a feeding tube from the end of April until the middle of September.
One of the biggest issues for her to overcome was regaining the desire to eat, and with that, her energy and desire to get back into life. A feeding tube and an infection drain sticking out of her did not help the situation at all.
Two major things helped to improve her recovery during that time. We began her on liquid vitamins to help supplement her system. We chose MaryRuth Organics – both their morning and night versions. I wanted to give her something that could be injected into her feeding tube easily and, when things progressed, could still be taken by mouth easily, AND, not taste nasty like many supplements can. Pill forms of vitamins were at risk of not being able to be absorbed or broken down easily due to the altered gastric system. I read up on many different types of liquids and was torn which direction to go in, but I was just impressed by what I was reading in reviews and in responses from the company to questions about their formulation. They are split into the two versions in order to supply the body with what it needs most, at the best time for utilization. This was such a unique thing to see in a supplement. I knew it made perfect sense, especially since I knew that my sister needed magnesium at night for a history of leg cramps and that is exactly what the night version contained in conjunction with other things needed to support the body’s cleansing phase at night.
In addition, I also gave her doses of liquid kefir to provide probiotics back into her intestinal tract. Knowing that the strong antibiotics after surgery and lack of actual food may have killed off the good bacteria, I thought providing it in this form might be a good thing and give her back her natural antibiotics to help her fight the internal infection. Our gut is responsible for our immune system so keeping it healthy is very important. Additionally, I also gave her Collagen Hydrolysate (powder mixed into liquid) to provide vital amino acids and bio-available protein.
The other major change was to replace her mass produced corn syrup nutrition supplement (and it pains me to say nutrition knowing it truly has no great nutritional benefit), with Liquid Hope by Functional Formularies. After much researching I discovered this was the first shelf stable REAL FOOD feeding tube supplement. The corn syrup one given at the hospital was making my sister nauseous and overall making her worse instead of better and all the doctor could tell us was to push as much in to make a calorie requirement within 24 hours. This was annoying since in order to do that to this small framed woman she would bloat and it would start oozing out the feeding tube. Plus – our GI tract was not meant to take food 24 hours a day. It needs time to digest and rest to function properly. Ideally it should always get a 10-12 hour rest period at night in order for proper digestion to take place and to facilitate the functions of other body organs. The moment we switched to Liquid Hope it was like turning on a light switch. You can equate the difference to going from candy bars to whole food smoothies supplemented with bio-available forms of vitamins. The body was now working on ACTUAL FOOD and that type of cellular digestion is critical to all systems and cells of the body. I didn’t care about calorie quantity anymore, I wanted to see her digest well, move her bowels well, and not be nauseous. She was not going to die of malnutrition from less calories than they demanded if she was getting actual nutrition and her body was slowly rebuilding itself. The reason I did not want to make my own smoothies for her was simply that I wanted her nutrition to be both complete and consistent in quality since it might have to be maintained for a length of time by different people.
When doctors care about calorie pushing instead of FOOD digestion, they don’t get it. In fact, they warn you that trying to eat REAL FOOD while on the feeding tube might cause you some intestinal distress. Well if you were consuming real food with the feeding tube, adding real food should not cause an issue. This is where their logic doesn’t make sense. After the surgery they tell you to try eating, little bites here and there, whatever you can get down. That is because your system has to learn to digest again, especially in its new rearranged format. So when time passes and you can’t eat, and haven’t taken in actual food for quite a while, they suddenly pump you with a calorie requirement instead of retraining your system slowly, with real food, like you had tried to do after surgery. So from a few calories a day, to you MUST get 2000+ a day? By the time they agree to put someone on a feeding tube you have already lost a significant amount of weight and nutrients. Then they pump you with sugar to try and make up for the deficiency. And one more thing for people to consider – why in the world would they give corn syrup to cancer patients?? The one thing doctors do know is that sugar feeds cancer – so why would you push sugar to help a body recover from cancer? For repeat business? A can of soda with some vitamins is hardly equivalent to a veggie smoothie of the same caloric content.
When I state that sugar feeds cancer, what I mean is that it depletes your immune system, which in turn prevents it from helping your body “fight” cancer cells – at a time when you need to support your immune system the most! If you do a simple search on this you will find many cases of research on this connection. Yes, the body converts the things you eat to certain types of sugar for energy, but that is not the same as direct sugar consumption. If it depletes the immune system it means that your body does not have the natural ability to fight off cancer cells or even any subsequent infection after surgery. Perhaps why C-Diff is so prevalent in hospital settings. Our body can in fact kill off “abnormal” cells that can grow into tumors when our immune system is functioning at peak capacity – and our immune system starts in our gut. However, a deficient immune system loses that ability and in turn these cells can grow and mutate faster than our body can contain them. So if you just had cancer surgery, and you are already in a weakened state, pumping your body with something like corn syrup, that would only be providing empty calories and not allowing for the cellular digestion from food that your body normally does, can weaken your system further. Like how muscles will atrophy from non use when you sit on a couch all day and don’t move. If there are already tumor cells circulating in your system your body is less likely to be able to contain them and the cycle can start all over again. I think of how little children eat mostly sugary snacks and sodas and fruit drinks and how many of them are constantly getting sick. For a child to get sick is almost inevitable, but some children seem to be constantly sick and catch everything. When you examine the diets of those children versus the ones who get small colds or get over illnesses quickly, in my own family at least, I see it all comes down to diet. Kids will eat sugar, so will adults, we all love a “snack”, but limiting the types and amounts might just stop the needless infections. We beat up our own immune systems day after day, especially with processed food, even alcohol, filled with chemicals, and then wonder why cancer is becoming more prevalent in our society. Heck, our soda and drinks and many other foods contain a MOLD INHIBITOR – something to kill off bacteria. A chemical that is meant to prevent the growth of a living organism – and we consume it gleefully into our bodies which are filled with LIVING CELLS and BENEFICIAL bacteria. You do realize that penicillin, one of the most amazing discoveries of medical science, is a mold, a bacteria. Does anyone wonder what that stuff might do to our living system? Its been used “safely” now for decades…… and over these same decades the cancer rates have increased. But I digress…..
With the MaryRuth vitamins and Liquid Hope, my sister’s system slowly rebuilt itself from that point and within a month she started to regain her taste for things. Very slowly, but it did happen.
Two years now removed from surgery and she is doing FANTASTIC. She did experience a small blood clot after many months post surgery and needed to be on blood thinner until it finally resolved, but she is Cancer free.
That brings me to something I JUST discovered in the last few weeks. Oddly, it comes as a result of my senior dog having weakness issues and how a simple increase in her intake of B12 improved her condition.
The B12 Connection
I began researching B12 and came across information that a lack of B12 can lead to diminished taste and affect smell. I also discovered that B12 comes in various forms. Most cheap vitamin supplements and fortified foods and drinks use the form cyanocobalamin. Though considered “stable”, this form is bound to a cyanide molecule and is synthetic. This form has to be broken down and processed by the liver in order for the body to use it properly. However, the breakdown of this form of B12 STARTS in the stomach when stomach acid breaks it down first. Actually, the stomach lining also produces something called Intrinsic Factor that helps B12 be absorbed as it travels into the small intestine. After this particular surgery, you likely have had part of your stomach removed and you actually may not have that benefit of acid and enough intrinsic factor since you are likely on acid reducers, and, your system is altered to the state where it can go directly from your stomach into your intestinal tract very quickly and therefore miss the key breakdown point. So if cyanocobalamin is not broken down, into the usable form of methylcobalamin, and bound to Intrinsic Factor, you get no benefit. (this is known as the methylation process) The two forms of B12 that are most useful for the body are methylcobalamin and adenosylcobalamin (dibencozide). One is better for nerve function (adenosyl) and the other (methyl) for overall cell function. These are both already in the form needed by the body and do not require any extra processing for them to be used by, any and every cell in, the body. Normally your body would convert any form of B12 consumed into methyl and then further convert it to adenosyl when needed.
One more thing to note about B12. In consuming foods we would normally get our largest dosage from eating meat, though some other foods do contain B12, including eggs and green leafy vegetables (something that is avoided after a whipple). After this surgery meat can be a difficult thing to digest along with other solid foods, and therefore many avoid it for quite some time while healing. This, in and of itself, leads to a B12 deficiency. To compound the issue, if you can start consuming meat, and you are on a PPI to reduce your stomach acid, you may then not have enough acid to unbind B12 from the protein in the food you ingest before it can even combine with Intrinsic Factor. A Harvard study published in 2009 discovered this issue as a potential side affect from PPI use. This would be another reason to supplement with a quality multi and/or B12 itself.
One of your first clues, about a B12 problem, if you don’t already have specific symptoms, might be when a subsequent blood test is run and they tell you that you have anemia or you are “slightly” anemic. B12 absorption problems, especially in the case of intrinsic factor problems (a VERY high risk and likely occurrence for whipple patients), causes both general anemia and Pernicious Anemia. There actually are specific forms of B12 supplements that come in pill form that contain the added intrinsic factor. Some also add in Folate since the combination is critical to cell and nerve health and its metabolism is greatly affected by lack of B12 and the combination increases the availability, healing and protection for the body. The problem remains though, that there is a chance the pill is not broken down quickly enough due to the altered GI tract. However, you can bypass the need for pill supplementation by using sublingual B12 lozenges or liquid or taking B12 shots. If our GI tract is in great shape, we can passively absorb some B12 not bound to intrinsic factor when consumed with food. This process however is much slower and inefficient, relies on an optimally healthy GI tract, and can delay healing.
An additional quirk in the blood test process is that when doctors run a typical serum B12 test, on some occasions the tests results come back with a high B12 level so they feel it can’t be a cause for the anemia. This is actually a false positive and can reflect B12 the body is taking from tissue stores due to lack of food consumption along with any supplementation a patient has taken (such as from a multivitamin). It can also reflect a test taken too soon after a patient has supplemented their body with B12 in general. (to be accurate for testing purposes a patient should refrain from B12 supplementation for 7-10 days) Serum B12 levels reflect ALL forms of B12 in the body, however, only the active form of B12 can be used by the body and therefore needs to be measured to make certain levels are accurate. If a doctor does still suspect that a B12 deficiency can be the underlying cause, to either rule it in or rule it out definitively, they can order an active B12 test, but they should also order a test for Homocysteine Levels and Methylmalonic Acid Levels as these raise and lower depending on B12 levels. For a whipple patient, a high B12 level should in theory also concern a doctor enough to run follow up testing since it might signal absorption issues. There are rare cancers and liver issues that can lead to high B12 numbers so this should be pursued and vetted to see if it is indeed a false positive or a signal of some other issue.
(This article link explains how the US and many other countries use Serum B12 ranges that are “outdated”. The ranges extend from ~200-900 and therefore any test that falls within that range is considered “good” and doctors never think twice – when in actuality you could already be in a severe state of deficiency. Japan changed their levels many decades ago to reflect symptom and disease increases in lower ranges. They now know that under 500 is already deficient, under 300 is already SEVERE deficiency. Over 900 may indicate inactive B12 due to deficient cofactors in the diet. These include B2, Biotin, Magnesium, Selenium, Iodide (thyroid problems could indicate this deficiency) and Molybdenum. Vitamin B12 – The Reference Range Level is Set too Low )
Patients should also keep in mind, that even slight B12 deficiency can lead to the development of a host of symptoms never thought to be related to something so simple. These include, but are not limited to, weakness and fatigue (both of which can be extreme at times), joint pain, shortness of breath, rapid or irregular heartbeat, tongue swelling and taste issues, tingling in hands and feet, depression, memory issues, difficulty thinking – brain fog, irritability, weight loss, dizziness, vision problems, pale or yellowish skin and migraines or regular headaches. If you are experiencing any of these or other symptoms, they are a sign of nutritional deficiency. Yes, they can also be a sign of other vitamin or mineral deficiencies, but they are not something to take lightly. If ignored for too long, especially in the case of B12, they can lead to irreversible nerve damage.
8/20/17 – I just came across a fantastic video that depicts the issues with B12 and how doctors are failing to diagnose it at an alarming rate. Folate intake can also mask B12 deficiency which is why it is not detected on simple serum B12 tests. The video is just short of an hour long, but it can change your life to know this information. And, it could also change the lives of people close to you by being able to help them know what their issues could be.
Diagnosing and Treating Vitamin B12 Deficiency
In further research, I discovered that both the MaryRuth Organics and the Functional Formularies Liquid Hope contain methylcobalamin. Adenosylcobalamin is not as readily available in supplements, though there are a few brands that use both forms in their B complex mixtures and both forms come in sublingual forms for quicker absorption. To further add to my disdain for the corn syrup supplement, they use cyanocobalamin as well as other vitamins that are not in bio-available form. Not a good thing for a GI Tract that has been altered and may not be able to absorb any benefit from cheaper supplementation. What could add to the problem for anyone with a J-tube instead of a G-tube is that you are bypassing the stomach completely and going directly into the small intestine. This lessens the ability for cyano to get broken down by stomach acid and bound to Intrinsic Factor in order for it to be utilized in the body.
I now understand that after an intense surgery such as the whipple, proper supplementation is critical in how quickly a body can recover. My sister was first diagnosed as a result of being hours away from liver failure. The ampullary gland was so inflamed that it backed up bile into her liver and she became completely jaundiced. They in fact, first thought that she had gallstones that had lodged causing the issue. In order to alleviate the issue and help her liver to regain functionality they had to place a stent to keep the valve open until the whipple procedure could be done.
As a result of her liver being compromised prior to surgery, and then her liver being called upon to process anesthesia and other chemical loads after the surgery, I sincerely doubt her B12 levels were anywhere near what would be needed to support the body’s recovery. In fact, her liver levels once again elevated after surgery, likely from the additional stress on the body. B12 is not only processed by the liver, but it is stored in the liver. In fact, when someone is exposed to heavy metal poisoning, they are treated by being given extremely high doses of B12 to help the liver flush the body of toxins. Since doctors will tell us that anesthesia can take MONTHS to work itself out of the body, one can conclude that it might mean the liver has to work that much harder to process out the chemicals and needs support in doing its job. Just as it needs support to rid the body of heavy metal poisoning. Hence, additional B12 during this critical time would support this function. If you had to be on chemo prior to surgery, you would likely be in a more depleted state since the liver was already working on processing that chemical from your system.
The catch 22 with vitamins…. After surgery you need vitamins and minerals to help your body heal. You can’t eat well so you have no good source of vitamin intake. Without the vitamins, your body becomes deficient and has to try and play catch-up with anything you consume, but unfortunately, you may not be able to absorb well because your body hasn’t healed yet. And so begins the cycle of deficiency that can lead to more problems. Doctors expect you to get your “vitamins” from foods, but yet they know you won’t be able to eat well enough, or varied enough, in most cases to provide what your body needs. I wonder what would happen if they actually provided, or prescribed, a quality liquid vitamin and mineral supplement right after surgery. Perhaps it would stop the prolonged hospital stays, speed recovery, stop recurrence and subsequent infections and provide bed space for more patients to get this life saving surgery sooner. I wonder……
So, in conclusion, I go back to my statement about “if I knew then what I know now”. With that said, I would have added larger, sublingual doses, of Methylcobalamin and Adenosylcobalamin to my sister’s regimen. Though she was getting methylcobalamin in both the MaryRuth Organics liquid vitamins and the Liquid Hope, she was getting more of a maintenance dose instead of a therapeutic rebuilding dose. It then took much longer to restart some of her system as every cell in her body was fighting for its share of the “good stuff”. There is essentially no documented risk of overdosing on B vitamins. They happen to be the one set of vitamins that are considered water soluble and the body will pee out what it does not need. That being said – no one needs to take more than necessary and every person is different, but in times of disease and stress more may very well be better. Folate (the bio-available form of folic acid) and B12 are critical to many functions in the body including the nervous system and memory and cell regeneration.
I am simply passing on information. Again, I am NOT any form of healthcare professional. PLEASE research on your own to verify my statements and see if they can help your situation. Discuss the statements and any concerns you have with your doctor or nutritionist. It may also reveal what they do and do not know as many are not trained in actual nutrition and real food. If they tell you to drink those popular nutritional drinks that are even given in the hospital, though well meaning, that should be a red flag as that is corn syrup based and contains the synthetic cheaper forms of vitamins. Additionally, if you are having any sort of skin conditions, it can mean you are missing or not absorbing critical vitamins or minerals from your diet, perhaps, even something as simple as Vitamin C, so bring that up to them.
I only know that one of the most frustrating things for patients and their caregivers was the inability to eat. Actually not wanting to eat. If something as simple as B12 supplementation could have changed that in a short period of time I would have done it in a heartbeat “if I knew then what I know now”. They can even give injections in the hospital if they feel it can assist, so you can ask your doctor if it could help in recovery. They may not have even thought about it possibly helping you but would likely have no issue ordering a shot or two to boost your system.
And you might want to keep the information on B12 in mind when it comes to dealing with seniors. (even senior dogs) Weakness, memory issues and neurological issues can also stem from failure to absorb B12 and other vitamins due to a compromised GI Tract – or in the case of this surgery – an altered GI tract. Some people even talk about “chemo brain” since they have more trouble remembering things in particular when undergoing chemo. Extra stress on the liver perhaps?
B12, or its lack of in the body, can even affect sleep. We tend to think of it for energy but it plays a role in our circadian rhythms. As we age, our system is not always able to absorb nutrients the way it did when we were younger. Years of processed food and chemicals and such can diminish its abilities. Studies have shown even over indulgence in alcohol can affect the liver and rob it of its ability to store B12. If you are a smoker, studies have also shown that this habit has been linked to problems in the stomach producing Intrinsic Factor to aid B12 absorption. A simple change to a supplement with the bio-available forms of vitamins could make a significant difference in quality of life, especially for people who are poor eaters.
I hope someone finds this information helpful and that it might improve recovery time and quality of life for all involved. We don’t know what we don’t know until we find out something we didn’t know. Only then can we ask better questions to find the right solution for our individual need. Each cancer, each patient, each body is different. And, each doctor who performs this surgery is also different in their technique and approach to pre and post surgery treatment. When we share what has worked for some people, patients and doctors can benefit and grow, which only helps people in the future. Again, PLEASE discuss any and all concerns and options with your doctor for what is best for you. (Below I added a section with more in depth details of her recovery process since some people had asked. Just keep scrolling down.)
Blessings to you!!
I DO NOT have any financial interest in either of the companies mentioned in this post.
I do use MaryRuth Organics vitamins and products personally as a result of the positive affect on my sister – I admit my diet can be deficient at times and like to know I am at least getting a daily balance of nutrients. The company also now makes a high quality plant based tasteless liquid probiotic that can aid whipple patients in their recovery and strengthening their immune system.
www.maryruthorganics.com @MaryRuthOrganics #MaryRuthOrganics
Liquid Hope served its purpose and I will forever tout its benefits for anyone in need of feeding tube assistance. And since it is real food – it can also be used as a soup for anyone in need of extra nutrition. They also now provide a Pediatric Specific form called NOURISH that is changing children’s lives.
www.functionalformularies.com @LiquidHope #LiquidHope
A few people contacted me to ask a little more in depth information about the details of my sister’s steps to recovery so I thought I would add them to this post.
My sister had her surgery on April 7th 2015. She did experience an infection in her lower abdominal cavity during her time in the hospital for which she was given a drain. She also had delayed gastric emptying. During her entire time in hospital she tried to eat food by mouth but she stated everything tasted like crap – and that is the mild form of her description. Except for ginger ale, almost nothing appealed to her and even water tasted horrible. She tried bites of food here and there but NOTHING would go down. She was placed on intravenous nutrition (TPN) for a length of time. Her body had actually retained so much fluid after surgery – she gained something like 30+ pounds of fluid – that TPN had to be introduced in order to also give her protein and other vitamins and nutrients to help with the fluid retention. They cannot give a patient lasix as it might actually cause them to go into renal shutdown and cardiac arrest. The body must naturally begin to balance the fluids in the cells to allow the normal release of fluid and waste products and allow the cells to not become dehydrated and die. This process would happen normally with a functioning digestive system as nutrients are exchanged. After still not being able to eat she was given a J-tube at the end of April. After that was in place for a few days she was finally released from the hospital at the beginning of May to continue recovery at home.
During her time at home, trying to keep up the schedule of the feeding tube, she seemed to be feeling worse and worse. Her nausea increased daily and seemed to be connected to the times she would receive the feeding tube supplement. They then put her on Reglan to try and counteract the nausea and vomiting. She also still could not consume any food as much as she would try a mouthful here and there. They did say we could try other type of smoothies and if she didn’t want to drink them we could put them through the feeding tube but that meant having them at the proper temperature and consistency and yet they still wanted her to get the feeding tube supplement.
After two weeks of battling this I researched vitamins I could put through the feeding tube since we could not get the amount of feeding tube supplement into her in order to get her vitamin levels up without her getting bloated, vomiting (which causes its own set of pain due to the surgery), or having the feeding tube leaking out since her system just could not handle that amount no matter how slow we set the pump. Your digestive motility can slow down for any number of factors – including what type of drugs or pain meds you may take. Everyone’s is different, and individually you will change even during a course of the day. Just like some days we don’t feel like eating much and other days we are ravenous.
I got in the MaryRuth Organics vitamins and began her on that – both their morning and night versions. Almost immediately she began having a bit more energy. I didn’t think it would make that much of a difference that quick but it did seem to be giving her almost instant energy. I would also add some liquid Kiefer because I wanted her to take probiotics and knowing it would be going directly into the intestinal tract was an added benefit. She could take pills, but real whole food with live cultures is the best form. I also added Collagen Hydrolysate. For those familiar with the latest in nutrition you might know its many benefits – many people now make bone broth to get its’ benefits. This comes in powdered form and could be mixed with liquid to put through the feeding tube – you can also mix it into broth to drink. It provides a beneficial form of concentrated protein for the body in an easily absorbed form. It is great for joints, hair, skin, muscle. It is packed with amino acids critical for body function. I personally was already taking it every day in my coffee so that is how I came to give it to her.
At this time I also researched the Liquid Hope since she would still get nauseous each time we used the feeding tube supplement. Though technically, if approved by your doctor, you can get reimbursed for a feeding tube supplement through insurance, we decided to pay for it on our own in order to start trying it on her faster than insurance hoops. I also knew that since we didn’t have a pump compatible with Liquid Hope (it is a thicker consistency even when thinned a bit) that I would have to do the feedings by hand – called bolus feeding. Not as easy as hooking up to a pump, but a small inconvenience comparatively to her discomfort. The amount you pay for Liquid Hope could be equated to paying for a meal when you go out so it really wasn’t an unreasonable expense, especially when you weighed the benefit of the switch. If she was able to eat on her own and not use a feeding tube we would be buying that food, so what difference did it make? Plus it is consistent and complete nutrition without needing to blend something up.
We started the Liquid Hope at the end of May. Again the difference was almost immediate. She did have a little intestinal discomfort at first getting real food into her digestive tract, but it lasted for a day. After that, all positive. We actually started very slow – doing 2 syringe injections at a time every few hours – but it was REAL FOOD – and she was so happy to actually start to feel a difference for the better.
I need to note one thing for people. The mass produced liquid nutrition used by hospitals – the one that contains corn syrup or even starch – also has something in many formulas that can cause issue for some people. MCT oil – which will read on a label as Medium-chain triglycerides – is added to many products. When I first read this I was impressed as I knew this was very good especially for the brain. It is derived primarily from coconuts though I understand it can be from other sources. Some people do not do well with its consumption, and it can cause intestinal issues, including severe diarrhea. The more you take in the worse the affects can actually be. Though it was added to each can in an amount that would be considered minimal, you are taking in multiple cans so it adds up and can still be a problem for some and it may have been why my sister became even more nauseous with each feeding. My sister has never liked coconut in general and it may simply be because her body does not do well with MCT which is found naturally in coconut. Though, the MaryRuth night version, which my sister does take still to this day, has coconut flavoring, but my sister has no issues with that.
The other reason I bring up the coconut issue is because Liquid Hope suggests to thin their product with coconut water in order to provide extra nutrition, electrolytes. At first I thinned it with water and she was doing well. I then obtained the coconut water to use and noticed that after giving her a feeding thinned with the coconut water she complained a few times of a headache and slight nausea. My understanding allowed me to quickly identify the possible problem and once switched back to thinning with water the issue went away.
The other little hiccup during her recovery was an abscess at the incision site. I regularly changed her drain bandaging as well as her feeding tube and made certain her incision area was ok. Within a few days at the very end of May I noticed a reddening of her incision and small internal bulge and suspected an abscess. We had a visiting nurse to come check on her a few times a week and were planning on getting their opinion when the nurse had to cancel. That night my sister had a small coughing fit and it “blew”. And boy did that sucker wreak! But, since I had already warned her of its possibility and we knew it was not necessarily a life threatening thing, we remained calm and made a trip to the emergency room for treatment and her surgeon’s team reviewed a new CT scan to make certain everything else was ok. It all just added a new task in keeping the incision opening clean and packed until it could heal from the inside out.
After a few weeks on both the vitamins and the Liquid Hope she began to get a small desire to try different things to eat. It would be a bite here or there to see if she could not only taste anything but also make certain she didn’t get nauseous from it. I believe the good nutritional support began to rebuild her system and that in turn leads to regaining her taste. We all know how when we are really sick we don’t have much of a taste for anything.
Her infection drain was eventually removed at the end of June, when she was no longer producing color and volume of output that signaled any issue.
She remained on a feeding tube until mid-September. By that time she was able to consume food on her own. Not copious amounts, but enough to keep up her strength and she was able to take the liquid vitamins by mouth which helped fill in the nutrient gaps in her diet – and still does to this day.
She began her preventative chemo by the end of September. She did quite well throughout her chemo treatments. Very little downtime each treatment – just a little tired, rebounding quickly each time. She continued to take her vitamins and her oncologist had no problem with their formulation during her treatment.
She did have a small blood clot around the site of the operation discovered on a follow up CT. She was started on blood thinner and had to take that for almost a year until it was no longer visible. The blood clot was never in an area that caused symptoms or issues so she was fortunate in that regard.
As a side note – in July of 2016 – we attended a family wedding. My sister had more spunk and energy than us folks, younger than her, who are considered in good health! She was 68 at the time of her surgery. She and her husband danced more than anyone – living and loving life once again. Her hair had all grown back thicker and better than before – it had thinned out immensely after surgery even before she had chemo treatment. (The Collagen Hydrolysate she still takes daily helped with that, along with maintaining her MaryRuth vitamins.)
An additional note – a few people who read the original article informed me that they were given B12 shots by their doctors before and after surgery to help in their recovery. In one case the surgery wasn’t even a whipple but an extensive intestinal surgery. In another, it was an extensive spinal surgery. As stated earlier – each doctor is different in their approach.
If I could impart one thing on patients undergoing this or any surgery, it would be the importance of good nutrition from real WHOLE foods and to take quality supplements to help support your system. Not toaster pastries or popular fast food places with questionable meats and other ingredients, or even those “nutritional drinks” loaded with sugar and ingredients and fillers known to cause inflammation and other issues. The more actual FUEL your body has from balanced nutrition during your cancer fight, before and after surgery – the better your chances of longer term survival. And if there is a chance that your GI tract isn’t absorbing all the nutrients from food the way it should, even if you are on digestive enzymes like Creon, something as simple as a quality multi-vitamin, liquid preferably, with bio-available ingredients, can boost your chances by large percentages. I mention MaryRuth Organics for a liquid because we use it personally and trust it as a result. Liquids are absorbed 90% better than pills. And if you don’t have the digestive means to break down a pill, like stomach acid or insufficient enzymes, drugstore vitamin pills are essentially useless. There are other companies such as Thorne Research and Pure Encapsulations, just to name a few, that use quality ingredients and not synthetic forms of vitamins. They have them in capsule form which “should” be able to breakdown easier, though there is still a chance it can pass through the vital absorption points in your new GI tract without having been broken down and then you miss the benefits. If they do break down they won’t get absorbed as quickly as liquid but would likely get absorbed better than a tablet with poor quality ingredients, and don’t have to be converted by the body to use them. Each organ can need different things to help it function, even at different times of the day, which is why MaryRuth splits their product into day and night formulas. Vitamins and minerals work in conjunction with one another to aide absorption, so if not in proper dosages or mixtures they can be less effective. Please support your WHOLE body with REAL FOOD, and take a good multi at the very least to compensate for those times you are running out the door and only grab a bite or two of something. And avoid sugar wherever possible, as it depletes your immune system and can feed any remaining cancer cells.
As I stated above, I simply wanted to share the experiences of my sister, and what I have also learned during her journey, so that others can get some ideas and learn what could benefit their situation, help them heal, and possibly prevent future occurrences. We can only help others by sharing information. We always want to talk to the people who have “done the research” – just like buying a new car or TV. I know this posting has actually helped some people.
If your doctor or hospital doesn’t want to use Liquid Hope, likely because they have contracts with the corn syrup based companies and won’t tell you that, you do still have the right to request better nutrition. Functional Formularies has been working with MANY hospitals and doctors throughout the country and they are certified with Medicare and approved by many insurance companies. They have trained staff to answer questions about your particular situation and guide you in the process.
Do research on your own – no matter who the doctor is – or how talented the surgeon – they still have an obligation to their hospital first, patient second.
FOOD IS MEDICINE
If you are not consuming a wonderful balance diet including meats and vegetables, and MANY of us aren’t, you are likely deficient in some important nutrients and need supplements – especially with the whipple and how absorption issues are prevalent with this surgery, EVEN for people who are taking digestive enzymes. Just as when vegetarians don’t always get the B12 they need since it is prevalent in meat. The whipple already makes eating difficult, especially in the immediate days following surgery. When you do start eating, it is only bites here or there if you are fortunate. Think of how that has already begun to deplete your body of needed nutrients. It can cause skin problems and medical conditions and prevent you from healing, especially after surgery and illness.
And lastly, be on the lookout for signs of nutrient depletion. It can occur as odd sensations in the body like twitching, joint aching, dry eyes, numbness, tingling, constant headaches, almost anything “not normal”. If it continues for more than a couple of days, this is a sign of vitamin/mineral deficiency – very prevalent in whipple patients, even those on enzymes, and a PPI increases that possibility. In addition, for those of you who don’t realize, CRAVINGS are also a sign of deficiency. Did you know if you crave chocolate you are likely deficient in magnesium? (I personally know this one because once I added more magnesium to my diet those bags of chocolate in my cabinet sit untouched). You can google charts for cravings, but here is a quick link to two to get an idea of what your cravings can mean. Cravings Chart Cravings Chart 2
One more added note since I just talked to my sister to ask her how things are lately and if there is anything she has learned in her journey to cope with her new system. She said she learned to FULLY chew her food and take her time and eat slowly. You get told this after surgery, but even she admitted that you don’t, and kind of can’t, focus on that information since it seems like you are being treated like a little kid being told how to eat. BUT, since many do not have a pyloric sparing whipple, you don’t have the luxury of the stomach and stomach acid taking time to break down your food as it passes directly into the intestinal tract. Additionally, by the time your new pancreas connection produces enzymes and they meet up with the food, you lose valuable absorption time. The more thoroughly it is broken down in your mouth, the easier time your GI tract has with it, and the more benefit you get out of it. If you gulp your food without chewing completely, as we all tend to do “on the run”, the greater your chances of discomfort on many levels. Another thing for people to consider with absorption, you are told that fresh veggies can cause distress. But in order to get a balanced diet, you need fruits and vegetables. Some people cook the heck out of veggies and then eat them thinking they are getting the benefits. Not really. You actually kill off the benefits unless you simply blanch your veggies to retain nutrients. That difference is noted in studies between canned and frozen veggies since canned need to be processed at higher temps to kill off bacteria. That can then make you go back to the cycle of being deficient in certain vitamins and minerals. This is where a quality liquid multi can make up for your short comings.
The next thing she mentioned was her little “trick” for getting over any little bout of discomfort she can get that begins to make her nauseous. Her secret weapon to nip it in the bud is Apple Juice – go figure. Sam’s Choice 100% Apple Juice from Walmart to be exact. She has tried many different brands, but for some reason, this is the only one that works for her. She literally carries around a water bottle with it now when she goes out “just in case”. I told her she should use a flask – it will make her look like she is “nipping”. LOL 😉 If anyone questions her – whip out that battle scar……
I came across the following resource which may help many patients battling cancer. The below linked page lists the resources mentioned in the video featured in the link. The first few minutes of the video are slow, but she talks about her experiences and other things that may be eye opening to many.