Back in the Saddle Again!

Hello All,

Been a L-O-N-G time since my last post. My fingers are crossed that the drama in my life has subsided for a bit and my Crohn's has chosen to be quiet for a while. YEAH!!

For the past few months I've only been able to eat bland things which are squishable with a fork and supplemental shakes (Ensure) My weight seems to have stablized at 118 lbs--down from a steroid induced 148 lbs during the first week in July. I'm slowly reintroducing "real" food, using my intake journal and COM software. Given my malabsorbtion problems, it's looking like my "restricted" calorie level is going to be around 1800-2000 cal./day. My next round of labs will be due in February. I'm anxious to see if they have improved. As a nurse I often work with patient's labs, and for about a year, the patients I cared for had better labs than me. One of my goals is to get rid of a few medications. Right now I'm a walking pharmacy.

Lately I've been catching up on my E-reading and have found several neat blogs. Thanks April, Amy, Mary, Aaron, Jamie,Willie and a ton of others for providing inspiration. Also much appreciation to Nerissa for encouraging me and keeping my spirits up when life really sucked. Aztec Peg offered some help and encouragement as well. I am finding myself (gratefully) among a very diverse, funny, sharp group of folks.

Looking back over my last bout of illness, I've found a few things to be thankful for.
1. Being nauseated through the holidays kills the desire to over-eat.

2. Drinking half a pot of coffee then throwing it back up REALLY squelches the
coffee craving. (Last cup was 10/29/06) Flavored teas ROCK!

3. It's part of God's devine plan to sell toilet tissue in multi-packs. Mega-roll Charmin is my friend.

Those are the ones that come to mind first. I'll save the rest for future posts.

Should any gentle reader have information or input, I would love to hear it. Hope it will be a wonderful New Year for everyone!

Still hanging in!

Hi all!! I'm still among the living. Much appreciation to all who emailed to ck on me.

My big plan was to post my labs when I had them drawn. I got them back on 8/24 (I think). The big, un-thought-of problem is this: My labs are so artificially skewed from my medications that I have no way of knowing what is really "me". I'm mildly anemic, which is expected. My vitamin and protein levels are mildly deficient as well, and this is a normal Crohn's finding. My wbc count is 5.8, which is low normal. It is artificially low due to steroids and Imuran. Before medication, my usual wbc count was 16, 000-22,000 and I felt pretty bad. My initial intention with CR was to get my calorie/nutrition intake under control then slowly taper off the drugs (with my MD's support). Guess that's still my plan, but I'm running into trouble in the amount I'm able to eat. I have ZERO appetite (thanks, Crohn's). I tracked my intake for a month and am comfortable eating 800-1000 cal/day. From mid-June to August 31 I lost 20 lbs. I'm supplementing my diet with vitamins and shakes but hope to eat enough real food to meet my needs.

Nerissa has been a HUGE source of encouragement and information, plus I'm borrowing food plans from April (keep'em coming!).

From a real-life standpoint my ex-husband is being a wanker (still) and I have to be in court Tuesday. He has refused to help with any of our daughter's medical bills and I am no longer financially solvent. Funny that it doesn't feel a whole lot different than when I was solvent. Guess there's a life lesson in this experience...As long as I have a roof over our heads and the lights and water still work, I'm happy. I have enrolled in a credit counseling program and should have a lot of the debt settled and gone in 30 months. In the meantime my goal is to help my daughter cope with her new health challenges and maintain my ability to provide our $500-$600 a-month prescription requirement. When her dad starts doing his part, it will be much easier. Too bad I had to sue him to get it done.... Anyway, I'll keep plugging along. Keep sending info and comments!!

Day two....

Well, I'm at the end of CR practice day number two. Good news--It wasn't difficult. Bad news--I've only had 879 calories today. My stomach is "yucky". I'm afraid it's a Crohn's flare-up in progress. If that's the case, I'm back to clear liquid for a week or two.....Cross your fingers and hope it's a flu bug... G'nite.

First day..

Well, today was my first CR test day using the tracking program from Bob Phillips' site. Very user-friendly--I'm impressed. As I looked up the assorted foods I ate today, I saved them to my personal food profile, making my tracking even easier later on. I didn't set a calorie goal today, I simply measured and recorded what I ate. Very enlightening....My total intake for the day was 1,458 calories, plus two drinks of my daughter's chocolate latte. This is a much lower number than I expected, since I ate all I wanted and also ate each time I felt hungry. My MD says active Crohns decreases appetite, which kind of kills my idea of remission coming in the next few months....Dammit....On the good side, I met most of my RDA's in many areas. On the bad side, my calcium and B12 intake are dismal, plus I'm a little low in a few other areas. (I'm also a carb hound....) I need to incorporate a ton more veggies. Usually I use my steamer; raw veggies don't always do well with Crohns digestive problems. Looks like I need to use it MORE...

Today was also my first CR based trip to the grocery. Armed with a tentative list, I hit the super WalMart. Honestly, it wasn't so bad. I bought fresh avocados, cucumbers and carrots, frozen colored peppers, mixed veggies, cherries, blueberries, fat-free cottage cheese and yogurt. I already have a cabinet full of dried beans, water-packed tuna and canned veggies, plus several frozen chicken breasts. I'm going to fix tuna salad for my lunch tomorrow with fruit for dessert, plus some almonds and cottage cheese and veggies for snack. I decided to buy some frozen veggies rather than fresh because I'll be steaming most of them, and frozen is often less expensive.

Overall, not a bad day.. As usual, any input from those more experienced is appreciated!!

Great info & super resource!

Guess it's time for me to get back on the wagon again....My daughter has had a L-O-N-G bout of illness but appears to be stable now AND I'm feeling pretty decent myself. Can't remember the last time she and I both felt well together....We went on a shopping spree to celebrate. Of course, now we're both tired and broke, but happy.

My last attempt at starting a sincere CR eating plan coincided with some big changes in my medications (plus my daughter's illness). Due to the medication changes I lost 12.5 pounds in six weeks and I felt it was way too fast. I'm sure most of it was fluid, due to steroids, but I could see myself shrinking the first three weeks. Now I've stabilized at 136 lbs--way above my tentative goal (and pre-Crohn's weight) of 115 lbs

Today I sent in my personal information to the CR Society for ongoing CR data collection. I've had several false starts in this process, so I'm planning to make this start "stick". NO falling off the wagon--maybe just dragging a foot now and then....My official start date is 8/28 and I will have my baseline labs drawn on 8/26. Luckily (luckily?), I have to have a kazillion labs (more than the CR Society requests) drawn at least every three months for my Crohn's management, so the insurance company is covering all of the labs-YIPPIE!! I'll post my results when I get them. The last ones sucked overall, but it's from the Crohn's. That's a big portion of my interest in CR. I've read a bunch of CR data regarding a marked decrease in WBC's, TNFa, and Sed. rate/other inflammation markers in CR practitioners. THAT'S WHAT I NEED.

For anyone interested in great information, check out http://www.nbrhd.net/CR/CR.htm . Bob and his wife, Shirley, have a great site full of resources. I've downloaded and installed the calorie/nutrient tracker from his site and it's quite user-friendly. I'm going to spend the next week learning to use the features it offers so I can be comfortable on my "official" start day. Today I went to Bed, Bath & Beyond and bought a small travel food scale. Similar (I think) to the one April talks about in her blog. I'm going to use it at home and at work. Once I become accustomed to using the portable one, I will look into buying a fancier, more precise version--maybe like the cool one Alton Brown uses on "Good Eats". I love gadgets......

Not EXACTLY what I'd expected....

Thanks to all for the nice comments and feedback. Very heartening! I haven't checked in for ages. For the past six weeks everything I've touched has turned to crap.....Wonder if there's a technical term for that....OH well.

On the CR front, I've had a huge awakening. I was SO thrilled to stop taking steroids for my Crohn's--Couldn't wait to shed the hair I'd grown on my knuckles (really). Well, my knuckles are smooth again thank goodness, but now I'm losing TOO much weight too fast. My appetite sucks PLUS the fact that Crohn's is a disease of malabsorbtion....I hadn't factored that part into the equation. As a nurse, you would think I'd remember these important points. HA! Anyway, I consulted a nutritionist friend with a Masters degree. Her response? It appears I will probably need to consume about 2000 calories a day to absorb1400. Of course, it needs to be good, healthy, nutrient-dense foods. Too bad my appetite won't allow it. I'm going to talk to my GI MD about it.

As if the eating/dietary crap wasn't enough, I've had a run of really bad luck. I wouldn't complain--but it started in 1998. Things need to be easing up a bit. I'll just share the high points of the past few months: My son has been kicked out of the army (after failing three drug tests and going awol once). My 14 y/o daughter (Photo above) developed Mono. in February and was out of school six weeks. During that time she became depressed and stopped eating--lost 20 pounds in no time. Just as things were turning around for her, she started having grande mal seizures and has been diagnosed with epilepsy. She's a tough kid but I hate seeing her struggle with these things. AND, to top off all the fun, her dad quit his job--dropping her health insurance--and moved across the state. It's not very Christian of me, but I'm praying that his pecker falls off. Hmmm, maybe that's why I'm having this long string of bad luck....Oh well.

Anyway, I'm having to re-think and re-arrange my whole CR idea. Of course, I'm learning a lot as I go. For any of you folks with CD or UC, check out www.crohnszone.org Register and post--after all, misery loves company!

It was worth a try...

Sorry I haven't posted in a few days. It has been a really busy work week!! I was able to keep my eating habits on track without a lot of pain though. Honestly, I don't miss sodas and junk food.

Thursday I received a call from Marsha with the clinical study. It requires a weekly meeting with a nutritionist and frequent exams by their Dr's. Wouldn't be practical for me to participate, given the distance. Damn. Oh well--guess I'll follow CR without the study and see how my Crohn's responds.

Here are some great daily menus--which I can't take any credit for. Angela from the E2L site gave me permission to share and she gets ALL the credit for these yummy menus. For my personal needs I would add more protein and tweak the amounts a bit, but Angela has done a fantastic job. I've also been using the menus from Beyond the 120 Year Diet by Dr Walford as a guide. After all, he's the authority and was kind enough to do the work. I've decided to work from the template he's provided rather than trying to reinvent the wheel.

Week 1 Day1:
Breakfast:
Fruit smoothie. Fruit blended with a handful of baby spinach leaves, a few dates 1 tbsp flax seeds, and a splash of rice milk.

Lunch: Whole wheat pita pocket stuffed with hummus spread. Raw veggies. Fruit.

Dinner: Lettuce topped with chili (mixed beans, tomato, green pepper, chili powder, corn). Fruit.

Day 2:Breakfast: 1 cup oatmeal, 3 tbsp raisins, 1 chopped apple,hazelnuts, 1/4 cup rice milk, 1 tbsp flax seeds.

Lunch: Raisin coleslaw, vegetable soup. Fruit.

Dinner: Salad. 2 different steamed veggies. Fruit.

Day 3:Breakfast: Fruit smoothie. Different fruit blended with 1 tbsp flaxseeds, splash of rice milk.

Lunch: Raw veggies with black bean salsa. Fruit.

Dinner: Lentil stew. Steamed veggies.

Day 4:Breakfast: fruit with brown rice with 1 tbsp flax seeds.

Lunch: Bean burger, salad. Fruit.

Dinner: Tomato Barley Stew. Salad. Fruit.

Day 5:Breakfast: Baby spinach, pears, strawberry, chopped apple with mango-pineapple dressing.

Lunch: Celery stuffed with Bean and Tomato Spread. Fruit.

Dinner: Leftover Tomato Barley Stew. 1 slice whole wheat bread.

Day 6:Breakfast: Fruit smoothie. Fruit blended with a handful of baby spinach, a few dates, 1 tbsp flax seeds and a splash of rice milk.

Lunch: Whole wheat pita stuffed with hummus spread. Fruit.

Dinner: Broccoli and Red Pepper Soup. Steamed vegetables.

Day 7:Breakfast: Frozen banana fluff with one tablespoon of ground flax seeds. Lunch: Raw veggies with spicy bean dip. Fruit.

Dinner: Salad. Fruit.

Recipes for week 1

Hummus spread:1 cup cooked/canned garbanzo beans2 tbsp lemon juice2 garlic cloves, finely chopped1/2 cup bean liquid (from the can)Blend all ingredients in a blender until creamy smooth.

Raisin Coleslaw:1/2 cup raisins1/2 cup apple juice1/2 baked potato, skin removed1 tsp mustard1 tbsp lemon juice4 cups cabbage, shredded2 cups carrots, shredded2 cups apples, peeled and shredded Blend the raisins, apple juice, potato, mustard, and lemon juice,then mix all the ingredients together.

Vegetable Soup:1 1/2 cups lentils1/2 cup barley, uncooked1 large onion, chopped3 celery stalks, diced3 carrots, chopped1 tsp Mrs Dash seasoningMix everything in a large pot with 6 cups of water. Bring to a boil and simmer over low flame for 2 hours.

Black Bean Salsa:3 Cups chopped tomato (about 2 med.)1 Cup chopped red bell pepper (about 1 med.)1 Cup chopped green bell pepper (about 1)1/2 Cup chopped red onion1/3 Cup fresh lime juice (about 2 limes)1/2 teaspoon ground cumin1/2 teaspoon chili powder1 (15-ounce) can black beans, rinsed and drained1 (11-ounce) can extra sweet no-salt added whole kernel corn, drained Combine all ingredients in a large bowl, stirring well to combine.

Lentil Stew:1 cup lentils for every 3 cups water1/2 medium onion, finely chopped1 tsp black pepper1 tsp basil3 ripe tomatoes, chopped1 stalk celery, finely chopped Cook lentils in water for 30 minutes with onion, pepper and basil.Add tomato and celery and cook for an additional 15 minutes.

Bean Burgers:1/4 cup sunflower seeds2 cups red or pink canned beans1/2 cup minced onion1/2 tsp chili powder2 tbsp ketchip1 tbsp wheat germ Chop the sunflower seeds in a food processor or hand chopped and mash the beans with a potato masher and mix. Mix in the remaining ingredients and form into patties. Bake at 350 for 20-25 minutes.Remove from the oven and let cool until you can pick up each patty and compress it firmly with your hands to reform the pattie. Then cook for another 15 minutes on each side.

Tomato Barley Soup:1 cup V8 juice1 medium onion2 carrots, diced1 zucchini1/4 cup unrefined barley6 tomatoes, chopped1/3 cup sun dried tomatoes, finely chopped8 oz white mushrooms, choppedHeat 1 cup of water and the juice on a low flame. Add the onion,carrots and zucchini. Let simmer about 1 hour and then blend in the blender. Return pureed mix back into pot and add the barley,tomatoes, dried tomatoes, and mushrooms and simmer another 45 minutes.

Bean and Tomato Spread16 ounces refried beans -- 1 can6 ounces tomato paste -- 1 can1/4 teaspoon chili powder1/8 teaspoon ground chili pepper -- red chipotle1/8 teaspoon garlic powder1/2 teaspoon cumin Put the refried beans, tomato paste, salt, and all spices into a mixing bowl and blend thoroughly, scraping the sides frequently.Cover and chill before serving.

broccoli and Red Pepper Soup2 lbs of fresh or frozen broccoli, chopped into large pieces1 large onion, diced3 large garlic cloves, minced3 tbsp dried soup mix1/2 cup brown rice (uncooked)3 red bell peppers1 lemon, juiced1 tbsp vinegar seasoning, to tasteIn a large soup pot, combine the broccoli, onion, garlic, water,soup base and rice in 2 quarts of water. Simmer, covered over a very low flame. Roast the red peppers in a broiler or on a gas grill until all sides begin to blacken. Quarter and remove the peel and seeds from the peppers, then puree them in a blender with the softened broccoli with some of the soup liquid. Add puree back to the pot. Add the lemon, vinegar, and seasonings to taste (eg tarragon, thyme, white or black pepper)

Frozen Banana Fluff 1 banana1/4 cup soy milkDash vanilla Peel and freeze the ripe banana in a plastic bag. Place soy milk inblender. Drop in small slices of the frozen banana.Mango Pineapple Dressing 1 mango 4 oz unsweetened canned pineapple2 tsp lemon2 tbsp red raspberry vinegar3 oz silken tofu Blend together

Too many 'ologists spoil the broth...

Well, made a trip to my Rheumatologist today--NOT my Gastroenterologist or my Neurologist--and the good news is I can participate in any food-related clinical study I want to. Bad news is I'm doomed to feel like hell for several more months. I'll spare you the details but suffice it to say---it sucks.

Speaking of food-related studies, I received an email on the study I volunteered for. I'm going to call tomorrow to ck out the details, but it sounds like I'm out of the running since I'm too far from St Louis. Guess I'll find out for sure tomorrow--I'll let ya know. Here's the info. I received:

If you are in the St. Louis region, call Marsha at (314) 747-3181 or Chris at (314) 747-3180.

Jim DrydenAssociate Director, Broadcast ServicesMedical Public AffairsWashington University in St. Louisphone: 314-286-0110fax: 314-286-0199

I spent some time jotting down easy, healthy food combos and snacks. I'm trying to compile a list of mix-n-match staples rather than specific meal plans so I can toss them together ad lib. I manage better eating several snacks/small meals rather than 2-3 large ones and I eat most of my meals at my desk or in my car. Some of my favorite easy-to-pack goodies are: olives, almonds, raisins, prunes, grapes, bananas, FF cottage cheese, apple with organic p-nut butter and several others that have escaped my mind right now....Some of my personal weaknesses are CHEESE and any type of pasta. For the past month I've been moderating my pasta and cheese intake, and frankly, I haven't suffered at all. And best of all, I think my behind is a smidgen smaller. That's really good to hear since my normal weight is 115-120 but (due to Crohn's) I've had to take steroids for seven months and I've gained nearly 30 lbs. I've got enough butt to share with a village of pygmies but luckily, I will be completely off the steroids on Sunday. YEAH!! For the past month my dose has been low enough that my appetite has returned to normal so I've been able to revive my CR interest in earnest.

To Amy--Thanks for the encouragement!! You've got little kids so I know you're double-busy. When my kids were little (they're now 14-Sara and 18-Mikael) I ate most of my meals as left-overs from their plates. Keeping everybody healthy is tough. eat-2-live@yahoogroups.com has some great kid-friendly, healthy recipes and ideas, as does the CR site.

Guess I'll learn to keep my mouth shut...

As soon as I posted yesterday's entry my mom called-sick. I drove and hour to pick her up and take her to the ER. Luckily, we were only there about 3 hrs but she complained the WHOLE time. She was miserable. Upper resp. infection, UTI, gross stomach bug plus the effects of smoking for decades (I quit about 4 yrs ago). She got a shot and a couple of prescriptions. As soon as we got out of the ER she wanted french fries and a strawberry shake. I didn't indulge in any of it. I just sipped my water. She enjoyed them though, and that's what counts. Anyway, I took her home and tucked her in. I'll call later to make sure she's feeling better.

For anyone who might be interested, here's the address for the CR support group I belong to. CRsupportgroup@yahoogroups.com Lots of neat information. The digest I received today had a few posts about the study I've volunteered for. Plus it had some research info regarding CR decreasing the levels of TNFa, which is my specific point of interest--besides the whole longevity thing in general. Crohn's patients have too much Tumor Necrosing Factor, which causes inflammation, which in turn contributes to the autoimmune process that makes us so sick. Some of the more powerful Crohn's drugs act to decrease TNFa. Remicade is one example but the side effects give me the creeps. Not to mention the fact it contains mouse DNA. Wonder if my cats would think differently of me if I took it??? Anyway, I've exhausted most of my Crohn's treatment options--and if I end up in the hospital again with complications, Remicade is my only remaining option. Actually, I could take a couple of other medications, but the side effects of those are worse than the Remicade. The choices are" bad" and "worse" at this point.

For now I'm going to work on my new CR-based health plan. Nurses have to make careplans... Plus, I think it's important to take a holistic approach. My intention is to make several small, deliberate changes over a period of time and not try to change too much at once. Today's challenge is to make my menus for the week. My goal is to create a master list of 15-20 simple, nutrient-packed dishes and keep supplies on hand to toss them together at any time. I don't get bored eating the same things, so I think it will work really well. After I tweak them, I'll post them and get some feedback!

Don't you hate it when your mother is right?

My mother ALWAYS told me that life went to hell at 40. Of course, I didn't believe her. Then I turned 40. (Before I go on, I want everyone to know I'm not a cranky, negative person but this part might sound that way!) Within a month I started feeling "not quite right"--running fever, no energy, stomach problems--silly me, I chalked it up to stress, single parenthood, poor diet, being 40. Also keep in mind that I'm a Registered Nurse.....Nurses do a great job caring for others but we get really CRAPPY marks in the self-care department..... Anyway, I felt really bad and went to the ER after work one day. I expected to come home with an antibiotic prescription but instead, I was admitted in guarded condition with a bowel abscess. Stayed seven days. That was 13 months ago and I have been sick ever since. Bad news--I have Crohn's disease and there's no cure. Good news--I have Crohn's disease and there's no cure. The illness has forced me to examine my life, priorities and health. Now that I'm feeling a wee bit better I'm making some slow, deliberate changes.

I started following DR Walford's research way back when, but never made any serious changes in my diet. I was young and invincible, after all. Now I'm feeling very mortal and I don't dread change now like I did 15-20 yrs ago. So...I'm making over my lifestyle (with CR being a big part of it) and implementing a self-care plan because I'm tired of being tired. So, in my maiden post I would like to thank several of the CR practitioners who have influenced my decision: Thanks a bunch--Nerissa, Warren, Al, April, Mary, Francesca and all the others that have offered support, encouragement, informative blogging and sage advice.