Sweet, Sweet Sleep

It's been 3 nights is a row now that I've gotten 6-8 hours of sleep. And, wow - is it sweet!

Previously, and for the last 4 or 5 weeks, since taking Prednisone, I had only been getting about 4 hours of sleep. And I didn't feel too bad. In fact, quite the opposite. I've had a sort of manic drive to get things done - particularly at night, say between the hours of 11pm and 2am, when a sane person would be fast asleep.

Try as I might - Sleepy time tea, calming lavender scented lotion, high protein bedtime snack, even warm milk - I remained WIDE AWAKE late into the night.

At the hospital, the doctor had given me a prescription for Ambien. It didn't work for me there, or at home. I even tried doubling the dose. Nothing. Not even the slightest drowsiness. Hmmfff....

My mom-in-law recommended I try Melatonin, which I did, at only a small dose of 0.75 mg. It worked great! I was so happy! Until...

It occurred to me that it may be prudent to check if there are any drug interaction warnings for melatonin. (Yes, you should always do this before taking something - oops, brain freeze I guess!)within about 2 seconds of looking it up on Google, I found out you should not take melatonin while taking prednisone, as they counteract each other. Oops, again - so no more melatonin (though I will keep it in mind for later).

That was a few weeks ago. And now, finally, it seems things may be improving. I am tapering down the Prednisone dosage (right now at 25mg per day, tomorrow I go down to 20mg), so maybe its reached a low enough level to allow me to sleep - and of course, will only get better as the dosage gets lower.

I dare to hope that 3 nights in a row establishes a pattern, not merely a coincidence, and that the sleep is here to stay.

Again, this is all a new experience for me. Likely there are many of you out there who have been there, done that - perhaps several times. Does anyone have any gems of advice on battling prednisone sleep deprivation? If so, please share...

Pizza Face! Prednisone and Acne - Argh!

It's as bad as it sounds. I'm glowing with the classic complexion of a hormone ravaged math nerd from the latest teen movie. Literally, hundreds of tiny pimples all over my face, neck, and chest - help!

It's another lovely side-effect of the Prednisone, which I am currently taking at a dose of 25mg per day. I'm weaning off, so the dosage is being reduced weekly, but it seems the break-out is only getting worse.

It started several weeks ago, but I was so thrilled to finally not be sick, that a little dermatitis seemed hardly consequential. However, the giddiness is starting to wear off, replaced by a growing horror each time I look in the mirror.

Make-up actually helps quite a bit for my face (it's nice to be female - sorry, guys!) I use Cover Girl Simply Powder Foundation in a compact. I don't like a lot of goop on my face (especially when its 90 degrees outside), and this is really light and natural looking and works quite well at covering the redness.

At this point, I'll take a moment to triumphantly brag that everyone comments on how great I look. I'd like to believe that this is true, that the make-up works fabulously, and that they honestly don't notice anything amiss. Though I have a sneaky suspicion that their generous comments spring from one of two sources:

1. Compared to the near-death pallor and gauntness of my countenance in previous weeks, I look much better, as in: "You're standing upright and your eyes are open? You look great!"

or,

2. They notice - they indeed notice - and in a fluster of shock and sympathy say the exact opposite of what comes to mind: "You look great!"

Actually, the brutal attack to my neck and chest bothers me much more. Lots of people struggle with facial acne, so I think it seems more normal. But on my chest - whoo! - it looks like I have small pox, or scarlet fever, or something equally alarming, and I don't want to frighten anyone. This led to my discovery that nearly every article of clothing I own is v-neck and offers no coverage what-so-ever.

I played around with some cute little scarves - but alas, I do not look cute, chic, or fashionably French - I just look like a dork trying too hard to dress up.

Anyway...I guess I'm just stuck for now. I finally when to target last night and picked up some Neutrogena acne cream. I'll see if it helps.

Fabulous Organic Skin Care!

In my newly revived efforts to foster a healthy home and healthy bodies for myself and my family, I've taken the plunge and switched to all natural/organic skin care. And I have been so amazingly pleased with the line of products from Aubrey Organics that I just had to let everyone know about them.

While I was in the hospital, a friend brought me a lovely goody bag which included the Evening Primrose Body Lotion from Aubrey Organics and the Neroli hydrosol from Simplers Botanicals. They are both scents used for calming and relaxing, and they sure cheered me up!

But I have absolutely fallen in love with this lotion! I have dry skin, and now it is softer than it has ever been. And the lotion is a kind of lighter formula; it's smooth and a breeze to apply all-over after a shower, not thick and greasy. I love the earthy, natural scent - it makes me feel happy!

I was so impressed, I wanted to try more products from the company. And wow! They are all amazing. Here's what I tried:

Natural Deodorant: Wow! It really works! I have always used an anti-perspirant/deodorant, and was sure a natural product would not measure up. However, I couldn't be more pleased - it smells great all day (not that sickly perfumy smell of store-brands) and no goopey white stuff - just clean, natural ingredients. I still sweat a little, but no more than when I was using an anti-perspirant. Keep in mind that it is HOT here - 90-100 degrees lately - so I'm testing this when it really counts.

Lumessence Eye Cream: I have dark circles and thin skin under my eyes. I've used various eye creams and products over the years, and have never noticed any difference. This one I've been using for 5 days so far and actually notice a visible difference (is that crazy or what?). My skin looks healthier, smoother, and I can tell the darkness is a little lighter. I can physically feel that it is softer and firmer.

So impressed I am by their products that I'm going to gradually try more of their items as I need to purchase them, (i.e. sunblock, soap, etc.).

The Neroli hydrosol is fabulous too. I spray it on my face throughout the day, and it just makes me feel happy. A little mid-day pampering! I'll be buying more soon, and trying their other scents.

I know I must sound like an advertisement or spokesman, but I just had to share. I'm always hesitant to try new products, especially when they cost a little more, for fear of disappointment. So I love reading reviews from real people.

As a reward for making it through this post, here's some eye-candy:

Absolutely gorgeous hydrangeas that my dear friend Alana brought me while in the hospital. Thank you Alana, they brighten my every day!

Supplements for Crohn's

I just wanted to take a moment to share a list of supplements I am currently taking. The majority are ones that have repeatedly been recommended through my thus-far research in the natural treatments of Crohn's Disease.

Florastor 250mg 2x/daily (probiotic)

Bio-K Plus (50 billion live active L. acidophilus & L. casei)

Fish Oil 1000mg 3x/daily (anti-inflammatory)

Ferrous Gluconate 324mg 3x/daily (for anemia)

Organic Life Vitamins 1oz. 2x/daily

Oil of Oregano 3 drops 1-2x/daily (anti-bacterial, anti-inflammatory, etc.)

GI Revive (powder supplement from my ND) 1 scoop/per day, contains:
L. Glutamine 5000mg
Arabinogalactans 1000mg
Licorice Root 500mg
Aloe Vera Extract 250mg
Glucosamine 250mg
Slippery Elm 200mg
Zinc Carnosine 100mg
Marshmallow Root 100mg

As I can, I'll try to post some of the specific research I've found regarding the above supplements and Crohn's.

Are there any supplements you would recommend? Please leave a comment...

P.S. - just ran spell check, and am wondering just how long I will have to blog about Crohn's before I learn to spell inflammatory. :-)

"Get In My Belly!" I Just Ate 2 Dinners!

Seriously. Apparently, my husband ate too many cookies before dinner (so yes, you can spoil your appetite kids).

And I'm looking at my empty plate, and then over to his full plate (less two or three bites) and well, the end result was two squeaky clean plates.

How much was that? Here's what I used to cook dinner: 2 pork chops, 4 smallish sweet potatoes (yams), 2 zucchini and 1 yellow crooked-neck squash. And they're all gone, in my tummy.

So, this has been one of the side effects of being on Prednisone. I eat every 1-2 hours and have not felt full once. I spend a lot of time checking the clock to see if it would seem quite glutenous to eat again, and quite so soon.

I have been teased my whole life for my lack of appetite, so this is quite a new experience. And absolutely fantastic compared to the previous 2 months of being able to eat nothing. I can't wait to get off the Prednisone, but for now I'll gladly take advantage of this ravenous oddity and try to pack on the pounds before I start the 6MP.

Again, this is all a new experience for me, so I don't have any past experience to prepare from. But "they" all say to eat, eat, eat when you're feeling good.

SO...what is there to snack on?...

1st Folow Up Appt - Great Doc! - Good News, Bad News

So I had my first follow up appointment since being diagnosed and getting out of the hospital. I had been anxious about discussing my desire for natural treatment with my doctor, since he is basically a new doctor to me, my condition is new to me, and I had no idea what his response would be.

The Good News:
I am very pleased with my GI doc, so far. He explained the medication(s) he would like to use and wanted me to do my own research on them so I was fully aware of how they work and side effects, etc. Very impressive to me - In the past, I have only had doctors tell me what do to, without much explanation or options.

I told him I had already been doing research and was very interested in pursuing a drug-free, controlled diet treatment, and - ahem - what did he think?

I was ready to be pounced on for being unrealistic, or reckless with my health, or a difficult patient...but...

He wasn't shocked at all and said he'd definately be willing to work with me towards that goal. He said he personnally only has one patient that is using diet only to control their Crohn's, and therefore wasn't the best informed on the diet aspect. SO - he's setting up a consultation for me with the Inflammatory Disease Specialists at Cedar Sinai in LA. He said they are the ones to go to - they can guide me and set up a plan, and then we'll all work together on what I want to do.

The Bad News:
I didn't realize just how bad my crohn's attack had been. In the hospital, I was so out of it when the doctor talked to me, that I didn't ask questions and get a full explanation of all the test results. Once on the Prednisone, my symptoms went away so quickly and completely, that I've been kind of thinking that the Crohn's flare had been more moderate and that the combination of the C. Diff infection is what had made me so sick.

BUT - at my appt, I found out that it was really bad. He said my colon was so inflammed and damaged that he only saw the lower part of my colon, he was afraid to go higher and risk causing further damage. He also said I am the only patient he has even seen since he's been practicing (21 years) that had esophagial crohn's - he's only read about it!

Yikes! The news gave me a bit of a reality check I think.

So, although I would like to try a diet only treatment, because of the severity of my attack and the damage caused, my doctor said he would be very nervous about going straight from the Prednisone to nothing at all. He recommended that I try the drug 6MP for 3-6 months. If everything is under control and no relapses during that time, then I can wean off the 6MP and transition into my controlled diet treatment. It sounded like a reasonable suggestion, so I'm going to give it a try.

I have a month to go that I'll be weaning off the Prednisone, then I'll start the 6MP. I'm nervous about the side effects, but hopefully I will only be on it for the intended 3-6 months and not any longer.

I have already changed my diet and am taking a ton of supplements. Hopefully, these changes will or have already been helping the healing process, restoring a healthy balance to my body especially while taking drugs, and hopefully help counter-act some of those side-effects, particularly the scary low-immunity.

Next post, I'll list all the supplements I'm taking so far...

My Story

Looking back, I realize that I've been feeling crummy, on and off, for the past 9 years or so (since I turned 20). I have never had a big appetite, and have been teased my whole life about "being full" after eating just a few bites. And I haven't liked it either - I love food and eating and have often looked longingly at a delicious morsel that I just could not finish.

Then, I started having minor digestive issues: gas and bloating. Not every day, but often. And occasionally with gas painful enough to knock me on the couch for a few hours until it went away. Over the counter medications did not seem to have any effect. I tried several.

I realized most people have some quirky health issue to deal with, and this was mine. When I mentioned the symptoms to my doctor(s), they always suggested OTC treatments like Gas-X, Tums, etc., which I already knew didn't work.

Then 2 years ago, shortly after the birth of my second baby, the symptoms got dramatically worse. I seemed to have stomach pain all through the day. Mostly mild, but enough to make me feel really lousy, especially while taking care of a 2 1/2 and a 3 month old. I would feel instantly bloated and full sometimes before I even had my first bite of a meal. I wanted to eat, but just couldn't.

I lost my baby weight, and then just kept losing! I went down to 115 lbs (I'm 5' 11"). None of my clothes fit right and I had to buy size 0 jeans! Help!

Then, I started having horrible stomach pain at night. It would wake me up and keep me up for hours. Usually, I could also feel a painful lump on the right side of my lower abdomen. I could kind of massage it away and provide a little relief, but it was generally awful.

Frustrated by the non-help from traditional doctors, I went to a ND (Naturopathic Doctor). in January 2009. I don't know what I expected, but she was great. She actually ran tests (why didn't the MD's do this months ago?) and found out I had H. Pylori, low thyroid, low hormones, and was borderline wheat-intolerant.

I took a 2 week course of antibiotics to kill the H. Pylori, and wow! the symptoms were gone within just 3 days of starting the treatment. I was SO happy. I thought the H. Pylori has been the crux of my problems and now all would be great.

I enjoyed about 2 months of feeling great, then the gas and bloating started again. (Sigh) I thought it was just going to be a normal occurrence for me. Then, diarrhea. Oh boy. Not as bad as many people suffer, I only went once a day, but there it was - for months.

Then, at the end of April, I suddenly became really sick with much worse abdominal pain. It took a week to see my doctor, and she thought it might be the H. Pylori again. It would take a week to get the results for the GI panel back. During that week I was feeling worse daily. My parents and mom-in-law were coming over to help with the kids, since I could barely get out of bed. I wasn't eating - just mere bites here and there. That week, waiting for the test, my doctor gave me 2 IV treatments of vitamins and minerals. During my second treatment, she got the results back - negative for H. Pylori, but I had high inflammation, slight internal bleeding, and anemia. She thought I might have Ulceritive Colitis and recommended I see a specialist.

It was another 2 weeks before I could get in to see the GI doc (actually his assistant), and when I finally did, I was down to 103 lbs. She diagnosed me with C. Diff and got me set up for another round of antibiotics and scheduled me for a colonoscopy.

As she was giving me all my paperwork, I passed out in the office! Fortunately, my mom-in-law had driven me to the appt., and so could take me across the street to the ER. I got a whole liter of IV fluids for dehydration.

Back home I started on Flagyl, the first antibiotic prescribed for C. Diff. And my, my, it was dreadful. It made me so nauseous, that those few bites I had been eating now seemed like a feast. I could barely get anything down, just meager amounts of broth and tea. I was so weak and tired, but thought if i can just get through these antibiotics, I can start eating again and all will be well. But when I did finish the course, I was just as sick. Another test for C. Diff came back negative this time (good) but I was still not eating.

And then, a new symptom! Burning pain in my esophagus when swallowing. Goody, now I really couldn't eat. I was scheduled for the colonoscopy, and tried so hard to do the prep, but there was just no way I could get those 2 liters of prep fluid down. The first several sips made me vomit each time. I called the next morning and cancelled the procedure.

The next day, I went to see the GI doc again (this time the actual Dr., not the assistant) yeah! He was concerned about my health (now I was 96 lbs) and tried to convince me to do the colonoscopy. I didn't need convincing, believe me, but tried to explain I just COULD NOT do the prep! He said he had an opening that afternoon for an Endoscopy - could I do that?

I did the endoscopy that day. (It was a breeze by the way - nurses were super great - didn't feel a thing...) The Dr. found multiple ulcers in my esophagus and inflammation of the upper intestine. He gave me lidocaine to help ease swallowing pain (didn't work) and said I really needed to do the colonoscopy and scheduled me for a few days away. But this time he suggested that if I couldn't do the needed prep, i could go to the hospital and let them take care of everything, plus get some IV nutrition for a little strength.

I was so weak and wiped out I knew that was my only option. I had been resisting the hospital the whole bout of my sickness, and now I think why didn't I go in sooner?! I checked in on Friday, and they immediately gave me more fluids, lots of blood tests, and inserted a PIC line. I was pretty much freaking out during all of this.

Saturday morning, I had the colonoscopy. I was so weak that I was in and out of sleep while they wheeled me down to the procedure room. I even fell asleep as they were hooking me up to the monitors.

The results showed more ulcers on the right side of my lower intestine and lots of inflammation. He said he could pretty much diagnose it as Crohn's, but was waiting for biopsy results to confirm. That night they started me on Prednisone, and FINALLY TPN and Lipids (IV nutrition and fats).

The next morning I was already feeling better. (I also had some Percaset, which worked like a charm - hee, hee!) But I think the TPN really helped. By Monday, my stomach pain and nausea were completely gone and I was so hungry! They upgraded me to a "Full Liquid" diet which now included cream of chicken soup, and wow, was it delicious! I ate everything. The next day, I got to be on a "Soft GI" diet, yum-yum. Ground meats and over-cooked vegetables have never tasted so good.

I felt great. All stomach symptoms were completely gone, and I was eating, eating, eating. They wanted to keep me on the TPN and Lipids for several days, so I pretty much spent my time reading, playing with the adjustable bed, and watching the clock in anticipation of my next meal.

After 8 days in the hospital, they discharged me on Friday, but I was on the IV TPN and Lipids for 5 more days at home. A little awkward - I had to carry around a backpack, and the IV cord was a little short, but it wasn't too bad. I still have the PIC line in my arm, until my Dr. appt this Thursday, but I'm kind of used to it now.

In the 2 weeks I've been out of the hospital, I've been doing research on Crohn's. Trying to learn about the medications by Dr. will likely offer me, compared with the benefits of diet and supplements. I've changed my diet significantly and Incorporated and whole regime of various supplements, in the hopes of avoiding any pharmaceutical medications for as long as possible.

Right now, I feel fantastic. I eat all day long, more than I have ever eaten in my life. And no stomach pain or other symptoms what so ever. BUT - I am still on the steroid treatment, 20mg of Prednisone twice daily. I am nervous that it is only the steroids making me feel so good, but am anxious to get off them and see how my new lifestyle will help.

Tomorrow I'm going to the Dr., and hopefully he will start weaning me off this stuff. I sure hope so, the insomnia is terrible. I am able to blog in the middle of the night, but I'd rather sleep...

Just Diagnosed

Three weeks ago I was diagnosed with having Crohn's Disease. Though it can be quite a serious disease, it is a relief to finally know the reason I have felt so poorly and now get a chance to do something about it!

I've spent these last few weeks starting to gather information about Crohn's. I say "starting", because wow, there is a lot of information out there! Some is consistently the same information, while other advice and even facts and statistics often contradict each other. So there is a lot of research to do.

Some of the most useful information i have found, however, are the personal stories that Crohn's sufferers are willing to share. It's one thing to read a "fact" or the result of a certain study, but I like to see how these treatments actually affect real people.

The purpose of this blog is to add to that information pool. After my initial research of the current pharmaceutical treatments for Crohn's, I am determined to try and control my symptoms naturally through diet and key supplements. I would like to share with you the different things I try and how well they work - my successes and failures.

Tomorrow I will post my story, along with my current list of medications, supplements, and diet plan.

I hope what I share will help you or someone you know who is suffering from this disease.