| T O P I C R E V I E W |
| momtoeight |
Posted - Feb 18 2007 : 11:57:02 AM
We recently discovered that I almost certainly have Crohn's Disease. There is a history of it in our family, and I have all the symptoms, and have had for years. It is probable that my youngest son had this before he was diagnosed with cancer as well (LONG story). I cannot afford to have it diagnosed right now, and even if I did, it is unlikely that it would really help, since doctors cannot offer much in the way of effective treatment - my chances are better actually by resorting strictly to dietary controls.
For those of you who don't know what it is, it is bowel irritation resulting from food sensitivities. It starts with one sensitivity, which irritates the lining of the small intestine. That causes malabsorption, and causes additional food sensitivities - more problems the more the bowel breaks down. Eventually it gets painful, but it usually does not get painful until it is very advanced - you usually have irregular malnutrition for YEARS before you have pain (they estimate an average of 5-10 years between appearance of initial symptoms, and diagnosis). And it is never diagnosed until there is pain. Many people with this have muscle weakness, exercise intolerance, headaches, depression, arthritis, nerve irritation, digestive problems, hormonal problems, etc, for many years, they KNOW something is wrong, but doctors tell them everything tests "normal", and they write it off to depression or hypochondria.
Anyway, standard medical treatment consists of chemotherapy type drugs, and a horrible unhealthy diet (look up LOFFLEX to see what I mean!). This kind of treatment also has a very poor prognosis.
On the other hand, natural dietary treatments - healthy foods and limiting chemicals and refined foods, etc - has a VERY good outcome. So that is the route I have chosen. I'm having some serious problems with it though, and I am probably writing about it more to express frustration than out of any real hope that there is a solution.
I am taking some supplements, because I've noticed certain symptoms that improve when I do. But supplements are not the long term answer, good food IS.
I live in Wyoming though. If you cannot buy it at Wal-Mart, chances are, it is not available anywhere else here either.
Fresh food is terribly expensive. It is horridly pricey to just keep fresh fruits and vegetables in the house, and we are not eating nearly as much as we should be. I keep running out - it is an hour to town, so we cannot afford to go just to pick up a few things. We go through 10 heads of Romaine a week, 5 lbs of apples just to get the kids one serving of fruit a day, 4-6 lbs of bananas, assorted cukes, peppers, tomatoes and avocados. It is hard to keep wheat in stock, because I have to order it 200 lbs at a time to afford the shipping. The best brown rice is also expensive. Oat groats are cheap, but I have to order them along with the wheat, or I can't afford the shipping.
Organic food is nearly impossible to get here, and what is available is so poor quality, and so expensive, it is just not a practical option. I cannot afford to pay $3 a lb for apples, and $6 a lb for organic veggies. The organic potatoes are more than $1 per lb, and then they were green so we could not eat the skins.
We have a very irregular income right now, so I may get a good grocery shopping done one week, then have to wait four or five weeks before I can do anything more than just purchase some bare essentials just to get by (with very creative cooking). During those times, affording veggies and fruits is out of the question.
Worse, if you go to town, you HAVE to eat a meal away from home - most of the time two. It is so far to drive, and usually we have multiple things to do. I cannot even eat a meal at a fast food restaurant, nor can I just pick up food at a grocery store that I can make a meal from. All of the simple and portable foods that I'd normally resort to are off the list of what I can eat without having problems.
We cannot effectively grow a garden up here - it would be more expensive than buying organic, since it is high altitude desert. I do hope to be able to build a greenhouse, but that is probably still a few years out, if we do well this next year.
Because of those issues, and the fact that I still have not quite got all the bugs worked out of my diet, I have not gone ONE DAY without pain since I started trying to control this - several times I've had severe attacks.
If I want to conquer this, I have to not only get the pain to go away, I have to back it off even further than that. Pain does not occur unless the intestines are VERY irritated. I have to figure out how to completely heal them up - otherwise the pain might diminish, but the malabsorption will continue, and it causes all sorts of problems that I need to get under control.
This is what I've figured out that works, so far:
fresh whole grains
avoid milk (except limited amounts of lactose free)
avoid chemicals as much as possible
fresh vegetables (minimally cooked)
fresh fruits
whole foods as much as is practical
limited amounts of very low fat pork or beef
limited amounts of chicken with fat trimmed off
can handle coconut oil, olive oil, and limited amounts of butter
No beans or lentils, and no tunafish or canned meats (canning changes the proteins and they give me problems)
Can handle limited amounts of nuts other than peanuts
no soy
no whey products (but CAN handle cheeses)
Can handle mild salsa and spices
This basically means we have to cook EVERYTHING ourselves, and that there are very limited fast meals that we can prepare. I can bake many things ahead, but very often I find that we are so busy, I end up with nothing available that I can eat - we run out, or do not have things cooked ahead. And eating anywhere other than home is nearly impossible.
I am just having a very hard time affording to eat, and trying to manage my diet. I feel like I've been handed an impossible task - to always choose stuff that does not irritate me, and never make a mistake, under circumstances that do not make those foods predictably available.
I know how to sprout, so I could theoretically have fresh veggies any time, but again, we have the busy aspect of things - I forget them. I've killed the last three batches of sprouts by forgetting to water them.
Any ideas appreciated.
Laura
Mom to Eight
Firelight Web Studio - http://www.firelightwebstudio.com - Small Business Website Services with a Difference - Personal, Flexible, and Friendly |
| 14 L A T E S T R E P L I E S (Newest First) |
| momtoeight |
Posted - Feb 20 2007 : 6:54:46 PM
Crohn's can cause all sorts of deficiencies. And whether you can get enough nutrients from your food is entirely dependent upon what condition your bowel is in.
Malabsorption is a response to irritation from a specific food intolerance. The food intolerance causes the bowel to break down and not digest food well. That causes further irritation, and compounds the malabsorption. And further food intolerances develop, not because you cannot handle them, but because your bowel cannot handle them in their damaged state.
If you can eliminate the irritants, the bowel heals. Many intolerances will reverse themselves - the original one will not go away though.
So whether you can get enough nutrients from your food depends on where you are in the process. Right now, I know I cannot.
I eat lots of fresh fruits and veggies, but I am still deficient in either potassium, magnesium, or both. They can both cause heart arrhythmias, which I have. It gets better when I eat foods high in those, AND take a supplement daily. Just the foods does not do the trick.
There are nutrients you are "more likely" to be low in, but no hard and fast rules about it because the disease is very different in each person - since it can be caused by different sensitivities in different people, two people with Crohn's can have radically different nutritional problems.
I started back on the aloe juice yesterday, and just went 24 hours without pain. No heart palpitations either!
I am taking Potassium, Magnesium, Biotin (it helps my muscles feel less tired), Calcium, Vitamin K, and Omega 3 Oils. Each of the things I am taking each of those because of specific reactions. When I take them, something gets better. I cannot take multi-vitamins, they make me sick.
Laura
Mom to Eight
Firelight Web Studio - http://www.firelightwebstudio.com - Small Business Website Services with a Difference - Personal, Flexible, and Friendly |
| brightmeadow |
Posted - Feb 20 2007 : 5:24:44 PM
Laura,
I don't know much about Crohn's but reading your list of symptoms, I can empathize a little...
I had gastric bypass surgery 7 years ago and also have malabsorption resulting from the surgery. I am supposed to take a prenatal multivitamin every day but over the last couple of years I have found myself getting careless about this...
Friday I went to the dr., told him my symptoms (which include a list much like yours), and he ordered blood tests, he suspects a possible B12 deficiency. With this information, I started doing some more research on the internet and find the most common long-term postoperative deficiencies are iron, calcium, and B12.
The Crohn's symptoms sound similar to the B12 deficiency symptoms... Do you know specifically what vitamins/minerals are not absorbed well?
I know that in my case, I cannot get enough of these things from the food I am able to eat to compensate from the malabsorption. So I have to get supplements, even though I know for most healthy people it is always better to get your vitamins from the food you eat. Could that also be the case once you have Crohn's?
I won't have the results of my blood tests back for a few weeks, but I went ahead and got a B12 supplement today. From everything I read it sounds like you can't overdose on B12.
You shall eat the fruit of the labor of your hands - You shall be happy and it shall be well with you. -Psalm 128.2
Visit my blog at http://brightmeadowfarms.blogspot.com ,web site store at http://www.watkinsonline.com/fish or my homepage at http://home.earthlink.net/~brightmeadow |
| Kim |
Posted - Feb 20 2007 : 4:31:56 PM
I have been trying to think of the title of that book Karen! I have it and it is awesome. He also wrote the Makers Diet. Which I have extra copies of....
Blessed Be!
farmgirl@heart
Be at peace with yourself and the rest will follow
http://chevy49girl.livejournal.com/
http://chevy49girl.deviantart.com/ |
| KarenP |
Posted - Feb 20 2007 : 4:27:56 PM
Laura,
Sorry to here about the Crohn's.
Have you read the book by Jordan Rubin?
PATIENT Heal Thyself
http://product.half.ebay.com/Patient-Heal-Thyself_W0QQprZ2412728QQtgZinfo
Maybe of help.
Just my 2 cents
KarenP
"Purest Spring Water in the World" |
| katiedid |
Posted - Feb 19 2007 : 1:59:51 PM
Oh, great idea! I am so glad Azure Standard comes your way...just wait until your catalogue comes...they have so much great stuff...you can buy organic wheat and other grains, and grind them yourself, it will be so much less $$, and I am sure you know how many vitamins are lost after you grind grains and let them sit on a shelf....
As for recipes, just try a strait substitution of rice milk for cows milk...YOu can buy a case of the Pacific brand rice milk from Azure's for around &18 - $20, and in more rural grocery store's IF they carry it it's $3 a quart or more!
Good luck
Kate
my new blog http/www.theknifemakerswife.wordpress.com |
| momtoeight |
Posted - Feb 18 2007 : 5:52:00 PM
Looks like Azure Standard runs right through on I-80 - we are just off I-80 by about 20 minutes, so if we could get delivery somewhere in Rawlins or Laramie, I could get to that.
Laura
Mom to Eight
Firelight Web Studio - http://www.firelightwebstudio.com - Small Business Website Services with a Difference - Personal, Flexible, and Friendly |
| momtoeight |
Posted - Feb 18 2007 : 5:48:07 PM
Well, we're sort of stuck where we are - in the middle of nowhere. Midway between Laramie and Rawlins.
I've tried gardening up here, and it was so expensive, and we got so little in return (even though we planted a big garden), that it was not worth it to go to the expense again. Not until we have a greenhouse where we can actually get things to grow. It snows and frosts until early June, and is frosting again by the beginning of September, and what does grow, grows small. We got a little bit of root crops, and some salad crops, but they were pretty pathetic.
I'm pretty sure it is not Celiac, because it gets BETTER with wheat, not worse. I am pre-diabetic also, and that comes under better control with regular whole grain consumption (as long as it is fresh whole grain). I do VERY well with a breakfast of oatmeal (with 2 TBSP boiled wheat and 1 TBSP ground flax seed thrown in).
I am figuring out what my triggers are, and I can typically avoid them.
I'd love to have recipes for milk-free biscuits, cornbread, muffins, and other basic baked goods.
I've used Aloe, and it DOES help. NAAAASTY stuff though! 8 oz a day does help to heal the bowel - Aloe seems to help with autoimmune disease, not by suppressing the immune system like drugs do, but by balancing it. BUT... I AM trying to get to the point of carrying a baby to term, and so that means I cannot use the Aloe for two weeks out of every month, because it is not recommended for pregnancy.
I am taking Omega 3 supplements, plus I am adding ground flax seed to my baking (and the oatmeal!). I even toss it onto a salad sometimes. It seems to help also.
I've read that Glucosamine can help with it, but have not tried that - not sure whether it is safe for pregnancy or not.
Thanks for the info on the co-op. I'm not sure what is available here, but I just met a lady in Rawlins who is planning to open a shop to sell some organic foods, and the interest at the event that we were at in what she was going to do was really phenomenal, so I'd bet we could organize something. I'll check it out and see what is possible.
Thanks also for the offer of a sprouter - but I actually already have two. Enough to keep sprouts going for a big family - if I could just remember to pull them out and water them! I've even got about 3 gallons of alfalfa sprout seed still in my storage room.
I so appreciate the support, and the ideas.
Laura
Mom to Eight
Firelight Web Studio - http://www.firelightwebstudio.com - Small Business Website Services with a Difference - Personal, Flexible, and Friendly |
| primjillie |
Posted - Feb 18 2007 : 3:04:04 PM
I don't have any advice, but would it be possible to move closer to a city where you could get fresh food and medical care? |
| YiberryYadeeKarin |
Posted - Feb 18 2007 : 2:50:49 PM
Laura,
I'm SO sorry to hear about the Crohn's. I have been battling ulcerative colitis for the past almost 12 years. Early on I attended some support group meetings for IBD and I always came away happy that I didn't have Crohn's! UC is no fun, but Crohn's sounds a lot worse...
I don't have any words of wisdom to share with you. I can empathize with you and offer you a sprouter I have. It's a Kitchen Crop Sprouter that I got years ago. I was going to grow broccoli sprouts for my husband way back when. We've been separated and divorced for almost eight years now and I still haven't used the sprouter!
If you're interested, let me know. I'll get your address and mail it to you.
Take care of yourself... Karin |
| ponyexpress |
Posted - Feb 18 2007 : 1:46:38 PM
Laura, you certainly have a lot on your plate....sorry, bad choice of words. I would suspect that as with any illness, it is intensified with the stress that accompanies the diagnosis. What can you do, what can your family do, what can we do, that would help the emotional distress?
Kate's suggestion of a co-op is a great one. I had wondered about that, too. If there isn't one in your area, do you have enough interested neighbors that could establish a food co-op?
I've tried to find a suitable exercise video for women my age...but they haven't made one called "Buns of Putty" |
| katiedid |
Posted - Feb 18 2007 : 12:38:06 PM
Laura! OH, honey, I can relate to you!!!
I have an autoimmune disease too, actually a few of them...Crohn's is an autoimmune disease
The best thing I ever did was change my diet. Before you do alot more with your diet I would definately look into this being Celiacs disease. It is by far the most underdiagnosed illness in this country....anyone who has been treated or diagnosed with the following should look into a gluten free diet..(celiacs disease is also an autoimmune disease, probably the ONLY autoimmune disease that can be controlled by diet alone)
1. spastic bowels
2. irritable bowel syndrome or disease
3. ulcerative colitis
4. Crohns
5. Chronic fatigue
6. other autoimmune stuff, such as: MS, RA, type 2 diabetes etc..
I know how hard it is to come up with the right food, and the money to afford it, but you MUST take care of yourself...
Google "Celiacs Disease"
I would be happy to share recipes and tips with you!
I can't eat:
Gluten
Dairy
Soy
Food dyes
preservatives
But, believe it or not, I have some good recipes...and I would be happy to share them with you!
OH, I also suggest you look into Azure Standard. They are a food co-op who delivers once a month to all the states in the West, I am not sure if you are close(ish) to Riverton, or Laramie, or any other city, but I would get on-line or call Azure Standard on Monday and request a catalogue, with that they will send you their route info. and delivery dates....
Azure's has saved me ALOT of money, and ALOT of drive time! They carry everything a great healthfood store would, but at better prices!
Send me an email, I will help more if I can!
Love and light to you
Kate
my new blog http/www.theknifemakerswife.wordpress.com |
| windypines |
Posted - Feb 18 2007 : 12:32:49 PM
Try to do the best you can. Everyone would benefit from the more healthy food, but maybe making sure you eat right would be a start. I know how affording it all is difficult. But do the best you can. Grow what you can, check around your area, and see if someone else grows something you don't and trade. You can do it. Go on the web, maybe you can find things closer to home that you did not know were there. Check with your county ag agent, maybe they know who is out there selling organic. Best wishes. |
| Marybeth |
Posted - Feb 18 2007 : 12:32:12 PM
My sympathys to you and your family too. You are the mom ya know. Have you tried any Omega-3 essential oils. those are flaxseed oil, primrose oil and salmon oil (three good sources) they are helpful in repair of the digestive tract and they reduce inflammatory processes and are much needed in Crohn's. Even Kyolic garlic combats free radicals in Crohn's. As for herbs, aloe vera is beneficial because it will soften stool and has a healing effect on the digestive tract.
Papaya is helpful as an aid to digestion.There has been a study done in Italy and it found that people with Crohn's who took a sustained-release fish oil supplement were less likely to suffer a relapse and some remained symptom-free in a year study. Hope some of this helps. MB
www.strawberryhillsfarm.blogspot.com
www.day4plus.blogspot.com
"Life may not be the party we hoped for...but while we are here we might as well dance!" |
| Mumof3 |
Posted - Feb 18 2007 : 12:12:43 PM
Oh Laura, bless your heart. I had an aunt that had Crohn's disease. It was horrible for her. She never did follow a diet that would have eased her discomfort and she smoked as well. (Which eventually took her life- she died of lung cancer.) I feel helpless in offering you any advice. But, perhaps this spring you could prepare and plant a garden to help with the veggie part of your diet. You could grow enough to can. That would help offset the cost and help you control what is in your food as well.
I almost always kill my sprouts, or end up with a hideously smelling closet because they have turned!! Yuck.
I wish you all the best.
Karin |
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