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Friday, February 21, 2014


Today I found a Forum that is new to me – Diet and Nutrition - after noticing the "How Do You Teach Yourself to Eat New Foods?" topic listed on the side of my screen under "Message Board Hot Topics." I read all of the entries with great interest. I must admit I'm not anywhere near as willing to try new foods as those who posted seem to be. I was going to post why I am afraid/reluctant to try new foods but as I started to write (and I must admit get things off my chest, lol) I realized it was much too much information for a Forum and I switched to writing a blog with a note in the Forum that I have written such a blog. Let me explain my situation as it relates to foods.

When I was a child, my mother insisted we eat all of our vegetables. I was the third child and after dealing with me she gave up on what had worked for my 2 older sisters - if they didn't eat their vegetables at dinner, they got them cold for breakfast the next morning! Both at dinner and at breakfast I would gag over them, complain of stomach pains and later vomit. My parents put it down to stubbornness and contrariness. In addition, I was labelled a hypochondriac. But, as mentioned above, and fortunately for me, Mom eventually gave up on forcing me. I was still urged to eat them and sometimes given ultimatums but no longer force-fed or forced to eat them for breakfast.

I grew up believing that I disliked a lot of foods. I knew I wasn't a hypochondriac - my pains and vomiting were real. What I learned at the age of 40 - yes it took 40 years - was that I was most likely born with Crohn's Disease. The way Mom cooked vegetables, I should have been able to process them rather painlessly as they were mush, but as I described earlier, they were still too much for me. For those of you who do not know what that is, a quick summary is that it is an auto-immune disease affecting part or all of the digestive system from mouth to anus. There are periods called flares where eating almost anything is painful causing bloating and gas and pains strong enough to be suspected to be gallbladder or appendicitis attacks. There are also periods, sometimes for years, where there are no symptoms when the Disease is in remission. Every individual with this incurable Disease is an individual and their form of the Disease is just as individualized as they themselves are. Some people only have the disease in the small bowel, some only in the large bowel, still others in both bowels. More rarely some are also affected in the Duodenum, stomach and throat. There are still others who have it all the way through. It is a difficult Disease to diagnose.

I personally have Crohn's Disease all the way through my digestive tract – mouth to anus. I was first hospitalized as an infant after long periods of loose bowels and crying in pain. As the years went on, similar bouts continued and during such I was unable to eat much. I was tested several times for gallbladder and checked out for appendicitis. I developed a number of allergies as a teenager, and in my early 20s I had 4 miscarriages. I was always heavy but would lose a lot of weight when I would go through one of these sick spells. My size may have complicated making a correct diagnosis more difficult than usual. The majority of people who have Crohn's are underweight and not heavy. I get mouth ulcers. I also get ulcers in my throat and stomach, duodenum, and both bowels. When in a flair, a portion of the digestive tract will become inflamed and will have ulcer-like sores where portions of foods being digested can become stuck in and the inflamed areas are unable to perform their usual function affecting the digestion of foods. Sometimes the inflammation becomes so bad that strictures form and can partially or totally block parts of the system so that food is unable to pass through causing severe pain and vomiting when a person with the Disease tries to eat. There is no cure and researchers and medical professionals do not know how or why people get Crohn's Disease. Treatment is usually with diet, medication, and surgery.

I had gone for 2 years without eating solid foods before I was finally operated on. I had been seeing a specialist whose specialty was Crohn's but he had misdiagnosed my condition as a "smoker's ulcer" which is in the duodenum. When he sent me to a surgeon to have what he thought was scar tissue removed from my duodenum I was again misdiagnosed with Pancreatic Cancer but with further tests he realized I had Crohn's Disease. During the process of examinations and tests during that 2 years I only managed to lose 55 lbs. A lot but not as much as you'd expect eating only liquid meal replacements. I was severely malnourished and almost died. My legs were bowed, my stomach was distended, my hair was limp, my nails discoloured and fragile and I was often disoriented and very weak.

That was 20 years ago. I have learned much about this Disease and pretty much have been able to keep it under control with medication and watching what I eat. What causes me the most pain and discomfort are all those foods my mother tried to force me to eat and I thought I disliked. I now know that I didn't dislike them so much as they hurt me. They still do so I rarely eat them.

There are many other foods, however, that are not vegetables that I am reluctant to try. Some have affected me in the past the same as vegetables but others, I'm not sure of the reason. Reading other comments in the Food and Nutrition forum, I think some of the problem may be with texture. For example, I like the taste of turnip and I've tried it cubed and mashed but I can't get it past my gullet even if I try to hide it in a stew or a soup. My Mom used to boil the heck out of everything. Chili was hamburger in a sauce with the shells of the beans - cooked so much they had totally come apart. All vegetables were mush that felt awful in my mouth and I found very difficult to swallow.

Another thing Mom used to do with things I didn't like was try to hide them in other foods such as putting cauliflower or other mashed vegetables in with the mashed potatoes, etc. I used to get furious and wouldn't even eat things that might hide others - when I would have one I could tell what was hidden in it by the different textures and tastes. To this day, I abhor foods mixed together. I occasionally crave a bowl of soup or of stew but after eating half a bowl I start to get nauseated and it will be many months before I crave them again.

This is such a strong feeling that I can't stand my different foods on my plate to run together and get mixed up. I may choose to have a bite of potato and meat together but I will not eat them if they have become mixed together on my plate. I love making a breakfast bagel with an egg, bacon bits, and a slice of cheese in a toasted bagel. When I have bacon and eggs, however, I do not like when the yolk of the egg runs all over the plate mixing with the bacon or my toast, nor do I like an egg cooked with cheese on it. Same foods in the breakfast sandwich but for some reason my I can tolerate it one way and not another. I love buffets and being able to choose my own foods but dislike those where they have a server behind the display putting items on your plate for you. They inevitably pile one food on top of another, sometimes a hot item on a cold one, or get beef gravy on a piece of chicken, etc. I've learned to like certain combinations together but seldom vary from what I would normally mix in such things as lasagna, spaghetti sauce and pizza but as a rule, casseroles, soups and stews are rare in the meals I prepare.

Basically, for me, the things that always hurt me are nuts, many vegetables or fruits that are seeds (although unless I'm in a flare, I can eat peas, corn, strawberries, poppy seeds and raspberries which is unusual), all melon or gourd foods, fatty meats, dark meats, deli meats, multi-grain cereals and breads, rice (unless over-processed in a canned soup) and all legumes. Sometimes dairy products hurt but when they do I can usually manage with Lactaid. When I'm in a flare anything that is higher than 2-3 gr of fat causes nausea so condiments and meats, etc. I can pretty well always eat pasta, potatoes (without the skin), carrots, mild cheeses if low fat, and most canned fruits (they are broken down somewhat and I can digest them then), most skinned fruits, and plain white bread. I can eat potatoes without the skin, celery and rhubarb if I peel the outside off, and bananas if I dig out the core so I'm not eating the tiny seeds. Most cream sauces, oil based dressings, vinaigrette dressings, and gravies made from real fat drippings make me nauseous. It is recommended that people with Crohn's eat a well-balanced diet and follow Canada's Food Guide. That is pretty well impossible when in a flair. When I had my surgery 20 years ago, part of it involved a by-pass in my duodenum so there is always a diseased part of the organ there and I am never completely in remission. I eat "healthy" when I can and less healthy when I have to.

As the years moved on, I developed other conditions. Two of those are greatly affected by the foods we eat. About 10 years ago I collapsed with a serious heart condition called Dilated Cardiomyopathy. The medical professionals believe this was most likely caused by a flu virus many years before but that had taken all that time to do it's damage until my heart could no longer function as it should. With this condition, I also have regular bouts of Congestive Heart Failure due to the heart's inability to work as it should. A couple of years after the diagnosis I had a combination Pacemaker/Defibrillator implanted in my chest. The Heart Failure is not only a symptom that the heart is not functioning fully – other organs are affected as well. With the build-up of fluids, the kidneys cannot function as efficiently. With the Cardiomyopathy, I am not getting enough blood to my lungs to be oxygenated which means my organs and brain do not get enough oxygen affecting their functioning. The excess fluids settle around the heart and in the extremities causing edema (swelling) and you become out of breath, lack stamina, and gain weight. In my case, I can gain up to 10 lbs each time the fluids reach the level of Heart Failure. The damage also caused a valve in my heart to leak. What little blood I could pump out of the damaged section of my heart to go through to another and on to the lungs, would gush back into the damaged part with the valve leaking. I was in Heart Failure more often than not. I was constantly out of breath (sometimes even at rest), I felt like I was drowning when I laid down, I was exhausted and had very little stamina. When the leak became critical, surgery was required. It was determined that Open Heart Surgery would be too dangerous for me due to the condition of my heart – it functions at 24% right now. A new innovative procedure was successfully performed about 6 weeks ago and even with that low function, I feel better than I have in years. The leak was repaired but the Cardiomyopathy cannot be but I still feel so very much better. (My husband says he has a new woman. Unfortunately I found out I can once again manage to vacuum the house – poopy). For your heart, it is very important to eat a balanced diet rich in fresh fruits and vegetables, low in fat and low in sodium.

A few years later again, I was also diagnosed with Type II Diabetes. Since the Diabetes, I have had issues with one of my eyes and develop from time-to-time blisters on the retina and I have lost part of the vision in that eye because of those blisters. My eyes tire easily and I usually see double – there is a light shadow beneath everything I read. It is very important to again eat a balanced diet rich in fresh fruits and vegetables, low in carbohydrates, and low in fat. I have several other chronic disorders but they are not affected by foods in the same ways (Osteo and Rheumatoid Arthritis, Obstructive Sleep Apnea, Restless Leg Syndrome, and Cough Syncope).

My diet is rather difficult. I eat fresh fruits and vegetables and such for my Diabetes and Heart until my Crohn's says no way - Stop! – with bloating, pain and sickness. Then I eat more processed and broken down foods that my Crohn's can handle. Those foods tend to have a lot more sugar and salt, and sometimes fats as well, causing my Diabetes numbers to rise or for me to go into Heart Failure as I retain too much fluid.

To top it all off, I have a number of food allergies which is often common with Crohn's Disease. I can now manage to eat strawberries, salmon, tomatoes and citrus fruits that I am allergic too if I take a long acting extra strength anti-histamine every day, and as long as I don't have each of them the same day or one or two of them a couple of days in a row. I cannot eat mushrooms or anything that molds (eg old cheeses) or anything that ferments (eg alcohol, condiments more than 1-2 months old, juices open for more than a few days etc. I can't even have foods cooked in alcohol – people say it burns off but I still get a strong reaction from it. These things cause anything from disorientation and confusion to convulsions with a general sick feeling. Unfortunately, it isn't always that straight forward. It has been my experience with both the Crohn's and the allergies that it isn't always the one item you have eaten that causes problems but combinations. You may have the same meal 2 days in a row and it didn't bother you on day 1 but on day 2 you are bloated and in pain or break out in a rash or have a terrible food-related headache. You most likely had something at lunch that interacted with something in the dinner meal causing the reaction. It can be very difficult to track sometimes.

I take 60 pills a day (prescription and supplements and over the counter medications) and have 2 shots a day and another monthly. I take a lot of supplements. With Crohn's Disease, when a portion of the bowel is diseased or has been surgically removed, it is impossible for that part of the bowel to function and nutrients are therefore often lost. Supplements are usually taken or administered in a shot so that the body can absorb what it needs. The surgery I mentioned previously, not only involved the by-pass but also the removal of part of both bowels where they meet at the ilium, the ilium and the appendix. Some of the pills I take are capsules and I find that the plastic tube they are made of often give me indigestion even though I am on the highest dose of one of the strongest pills for such. I have to be careful to take them with lots of water and/or with food so timing is important. I don't want to find myself having to have an extra meal or snack which would affect my glucose levels. Also, I have to limit my fluid intake to about 5 glasses a day because of my heart condition so I have to be sure to take those pills when I am drinking water to take other medications. Therefore, I usually have 4 glasses of water a day - one each time I take my meds at breakfast, lunch, dinner, and before bed - and a 5th during the evening when I am usually sitting reading or watching TV or am on the computer. The limited fluid intake and the diuretics I am on cause extreme dry mouth and throat making swallowing difficult and I often cannot finish some foods because they have become too dry for me to swallow after chewing for a while. This interferes with the diet too.

A lot of medical professionals get very frustrated with me. Each wants me to follow the diet most advised for the condition they are treating (eg low sodium and heart smart for my heart, and low carb and fat for my Diabetes). Dieticians and my Nurse Practitioner who deal with all of my conditions and try to help me manage them as a whole are often at their wits end trying to help me come up with a good diet when there are so many issues. I have had several dieticians simply tell me they can't help me at all and I should just eat what feels right and that doesn't hurt or cause a breakout of some kind. When I am hospitalized, I must bring in foods that I can eat. If they put down the Crohn's, the Heart condition, the Diabetes and the allergies on the diet/nutrition form, I get a visit from the hospital's dietician asking what I can eat. Because their food systems are now out-sourced there is little to nothing they can give me and they can never replace a meal once delivered as there are no longer kitchens or food sources. Hospitals take each of the conditions and dietary needs to extremes in fear that there will be some reaction from one while in their care (eg no salt if on a low-salt diet, no fruits or vegetables or fats if have Crohn's, and no sugar or fruits if Diabetic). At home you have to have some things from time-to-time that are off the recommended diet and you may get away with it but they do not want to chance it.

Family and friends find it difficult too as one of the most popular social activities is to share a meal or snack. We seldom eat out, seldom eat at friends' houses, and seldom travel. When I visit family or go away for a weekend, I have to take foods with me that I know I can eat because I know there will be a lot of foods where I am going that I will not be able to have. I have a brother-in-law that has deliberately put items in what is cooking that he knows I cannot have sure that I will never know the difference – wrong! and dangerous! When we do eat out, I usually have a single item on a menu pre-picked in each restaurant we go to because I have tried it before without harm and because through research I know the nutrient values in the meal. When we eat with friends, they have to be very good friends who understand I am not criticizing their cooking or "just being picky" when I do not eat everything presented.

When my husband and I first started seeing each other, he had trouble understanding my eating issues. As time went on, and he witnessed just what can and does happen when I have things I definitely know I shouldn't he has a better understanding and helps ease the path when he can. Fortunately, we like and dislike many of the same things and he likes the way I prepare foods. There are always exceptions and neither of us minds if one is having their favourite food while the other does with something else from time-to-time.

There are many times I would like to expand my diet. Will I try new foods? Can I get past the changes in texture, the different tastes, chance pain and discomfort, or not? Somehow my daughter grew up loving vegetables. I hope that my grandson too will try more different foods. My daughter, grandson and I all have a sensory problem with the taste and feel of things in our mouths. My daughter seems to have pretty much overcome hers. Mine is compounded with digestive issues and allergies. My grandson is only 5 so hopefully he too will overcome. He eats very few sweets and prefers vegetables and fruits but very little variety in either.

Some of the suggestions in the Forum topic were similar to what my mother did with me. They were, however, recommending that the person with the issues make the changes and not have them secretly made for them by another. Perhaps that is the difference and I can apply that logic and try something new for myself … but not tonight … I'll have to wrap my head around this and psyche myself up. I know this sounds silly to some but to others this is serious business and not to be taken lightly.
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Member Comments About This Blog Post
    You amaze me - with all that going on and you still are here giving others encouragement - you are amazing

    I do believe that we are our one best 'doctors' so to speak = we know what works for us and with the knowledge we should be able to put together some kind of plan for ourselves - knowing that today and tomorrow could be plan a but when symptons change we go to plan c.

    Keep smiling - we are here for you in anyway we can be

    1310 days ago
    I am not going to go into much detail, but I too understand your situation. My answer will be short and sweet - I DO NOT FORCE MYSELF TO EAT ANYTHING I DON'T LIKE - in fact many years ago I told a family member that, not only did I NOT have to eat it, but that to ME the essence of being an adult meant I would NEVER have to eat anything I didn't choose to eat. Once I reached that level of confidence, I have learned to occasionally try new foods IF THEY APPEAL TO ME - I also experienced foods hidden in other foods to "FOOL" me into eating them - I have some experience with inflammatory bowel disease and they thought I might have Crohns or Celiac disease - relaxation techniques and a focus on HEALTHY have really changed my life. Listen to YOUR body and YOUR mind about what to eat and what not to - there are plenty of healthy choices out there - if your eating is terribly imbalanced, supplements can help balance things out.
    1311 days ago
    wow that is a lot to handle. I was wondering lets say for example you never tried blueberries and you have a couple and they don't give you issues but you don't like the texture or feel of them, could you put some in a smoothie and try it that way, I know you have milk issues but when I make a smoothie ii is often just ice , water and then fruits or nuts and greens blended. just try a little of one new food a week if you don't like the texture but have no issues try it in a smoothie with other safe foods. Just a thought . hugs
    1312 days ago
    I understand your frustration! so many issues to juggle... autoimmune conditions are that way. I have a host of GI troubles associated with my scleroderma, but none of them as serious as yours.

    As with all autoimmune conditions, we have to learn to manage them ourselves. This is a thing most people in the world will never have to handle. If they have health issues, they can go to a doctor or specialist and that professional can treat them for it - usually successfully to some degree. For us, if we don't step in and actively advocate for ourselves, stand our ground, and modify what we can (while not going against those specialists' therapies, of course), we rarely see any improvement. It's so very frustrating and demoralizing. Especially when they start telling you it's "all in your head", or referring you to psychiatrists simply because they don't know and can't say so and it undermines their confidence and experience. I can understand that. I feel the same way!

    Meanwhile... you sound like you at least know what you can/can't digest. I could hail the benefits of this or that way of eating, but I'd be promoting what works *for me*, and that isn't necessarily what would be beneficial for you. Do you have any functional medicine practitioners near you? they approach health from a "wholeness" viewpoint. Sometimes they can help you, as a partner, to provide a little relief. It's worth looking into, at least.

    You mentioned something about muscle tremors or restless leg... I can't call it right to mind at the moment! In any case, magnesium has been mentioned for these sorts of things. Magnesium is absorbed very well through the skin, so it wouldn't be something you'd have to take orally. Epsom salts in a nice warm bath soak is a great source. I recently found some epsom lotion in WalMart™. I've never seen that before. It wasn't expensive. Perhaps that might help you along those lines.

    Also, you mentioned the capsule material of some of your medications or supplements. I have seen recommendations for *SOME* meds that can have the capsule opened and the contents mixed in some applesauce. I'm sure it doesn't taste wonderful! but it might save your gut the repetitive challenge of the capsule. Be very certain you check package inserts that they don't say you mustn't break or chew the med. And also be sure you run this by whichever specialist is monitoring your Crohn's.

    I hear you about never knowing what you can eat - even if you've eaten it before with no problem. I have trouble sometimes just eating the same meal on sequential days. First day, a charm. Second day, omg... it gets to the first section of my intestines and just lays there and ferments painfully until I can remove it. urk

    I hope you can find some improved management techniques. Do try to find a functional med doctor.
    1312 days ago
    Diabetes is in my family - fortunately I don't have it. My late husband had severe Crohn's which resulted in a bowel resection. He also had heart disease (died suddenly with his 3rd heart attack) He had other health issues too. I have food allergies and intolerances, and this also runs in my family, including life-threatening ones. My little 6yr old g/son has extreme allergies to dairy, egg, all nuts and kiwifruit, and less serious allergies to many others. My son would often stop breathing in his sleep as a result of people sneaking him foods that they had been told he was NOT to have because of the allergies. It was always "one won't hurt" - well THEY weren't the ones dealing with the serious after-effect during the night! I know it can have a huge impact on our lives, and unfortunately, many of those who don't have issues, tend to think it is 'all in our heads' :-(

    It sounds like you are coping very well considering your many hurdles.

    1312 days ago
  • 4KWALK
    I am somewhat familiar with Diabetes and trying to eat with that in mind is enough for me to deal with. You have so much to deal with and I'm sure you know what is best for you to eat.
    I can't imagine how you do it but I hope you continue to find foods that you enjoy without causing problems.
    1312 days ago
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