I Thought I Was Going To Die

Well, I didn’t die. But for a while, I was kinda wishing I would.

I spent the other morning (woke at about 5 am) crouched over an ottoman in my living room, unable to do anything but rock, and whimper, and cry. I broke some of my nails because I was clutching the fabric of the ottoman so hard. The abdominal pain and nausea were unbelievable. It felt like my body was trying to reject my stomach and my spine at the same time – one out the front of my body and the other out the back. That was probably due to the abdominal swelling. Unproductive vomiting and writhing ensued. Eventually, I was able to keep down two Gravol pills, one 8mg Zofran (an anti-emetic), a 10mg Buscopan pill, and 1mg of Clonazepam (because the gravol has the side-effect of making my Generalized Anxiety Disorder intensify, as all antihistamines do).

After about an hour the pain was a little diminished, and I was no longer heaving. Taking this as a good sign, I used an old standby trick to try to reduce the pain further: I ate ice. Yup – just regular old ice cubes. I crunch them up and swallow them down. The cold seems to help with whatever inflammation is going on in there.

The reason I’m posting this is to show how weird life can be for C.Diff. survivors. I don’t know what happened, but I think I might have had some kind of a stomach virus that made my insides sit up and scream. Maybe it was just the “post-infection IBS” having a party in my abdomen. I have no idea. My doctor has no idea. And there’s no way to really know. That seems to be the refrain for us survivors.

But, on the 13th, I’m going to see someone who might know, or who might at least have a way to find out. I’m going to make it a point to ask about pain relief options, because I’m currently experiencing a real energy low due to exhaustion from constant, never-ceasing pain. I’m really reluctant to take anything that could slow my digestion down (which is why I take even my Buscopan really sparingly). So that pretty much rules out the whole codeine/narcotics family of pain relievers. And anti-inflammatory drugs always seem to be hard on the stomach, but maybe there’s something else. If there is, I’ll post it here, because I know a lot of us are experiencing debilitating pain.

For now, I’m going to go eat more ice cubes.

Wish Me Luck

I have my very first appointment with my new doc tomorrow. I’m really scared she’s gonna want to redo the scopes (definitely not a fan of scopes). If the phrases “I don’t know what to tell you” and “You’ll just have to learn to live with the pain” or “Good luck with that” pop up in our conversation (as they did the last time I saw a general surgeon) I’m firing this doc and finding another one. Somebody, somewhere has to have a clue about this. I am a willing guinea pig, but not one doctor has been willing to experiment with my case. Here’s hoping this doc will take a chance on me!

A Discovery, A Move, & A Lamp

A Lamp:

Well, I’ve been using my TDP lamp and I can report back that it does help with pain relief. Not sure whether things are healing, or micro-circulating, or trace-element-absorbing, but it does do a lot for the spasms. Patience is required, though – I feel best after I’ve used it for at least 20 min. at a time.

A Discovery:

My latest discovery is the wonder of peppermint-and-oregano oil enteric capsules. Get a strong concentration, make sure the capsules are filled with oil (not the dried herbs) and make sure it says “enteric” so it opens up near or in the small intestine. Then, take before meals and when you’re feeling really rough, and enjoy relief from nausea, intestinal inflammation and stomach-ache. The only disclaimer: both oils act as anti-bacterial agents, so take your probiotic supplements at a different time.

And A Move:

Yup, I moved. No more North for me, I flew South for 5106 kilometers (or 3173 miles) in search of doctors, treatments, and kinder climates. So my first appointment with my new doctor is on April 1st. And while I’m enjoying the benefits of living in small-town-Canada, I’ve got access to several of Canada’s major medical centres complete with testing and treatment facilities, all within a 4-hour drive. I’m ready to start the circus again (you just know a new doctor will want to redo all the tests I’ve already had) and hopefully I’ll get somewhere this time. Even if my diagnosis is “complications arising from previous infection with C.Diff”, treatment options for those complications are much more accessible. The idea of a temporary stoma is being thrown around, which I don’t relish, but whatever gets me healed, right?!? Oh, and the steady circadian rhythm here in the South is helping my immune system reboot, and I’m feeling ever-so-slightly less exhausted, so make sure to get your sunshine, people!

Oh Yes I Did!

When I come across something good, I want to share the joyful news of its existence with everyone, sooo…

After another blissful 15  min. under Xiu-Mei’s far-infrared TDP lamp, I decided to buy one myself. For all my C. Diff. peeps out there – the pain relief one gets from one of these babies is incredible…

tdp lamp

It’s expensive (you’re looking at around $160 – $300), but if you’ve got the funds, just go for it. I have no idea if the science behind the “mineral” part of it is sound (TDP infrared lamps were developed by a scientist in China and have a plate studded with minerals that are said to ionize and enter the body through the skin with the infrared light waves). All I know is that the heat from a TDP lamp feels like it goes deep – better than a heating pad or a hot bath – and it stops intestinal spasms almost immediately. The lamp emits infrared light and heat below the visible spectrum, so the first time I encountered a TDP lamp I thought Xiu-Mei had forgotten to turn it on until I felt the deep heat. The lamp works best when its rays hit bare skin, like the lady being treated in this pic:

tdp abdominal treatment

If you have one at home, you can treat yourself about twice daily, with each session lasting up to 45 min. Of course, you don’t get the benefit of acupuncture if you D-I-Y, but you do get the heat and increased circulation. And at a cost equivalent to about three acupuncture appointments, I consider it a deal. Here are some of the other benefits TDP far-infrared therapy claims (I cannot verify anything but the “I feel good, and hurt less” effect):

Benefits:

1) Far Infrared expands capillaries which stimulates increased blood flow, regeneration, circulation and oxygenation.

2) Far Infrared is excellent for detox. Scientists in Japan report that in the FIR treatment of clogged capillary vessels, heat expands the capillaries and then initiates the start of a process to dissolve hidden toxins. Far Infrared thereby promotes elimination of fats, chemicals and toxins from the blood: Poisons, carcinogenic heavy metals – toxic substances from food processing – lactic acid, free fatty acids, and subcutaneous fat associated with aging and fatigue – excess sodium associated with hypertension – and uric acid which causes pain. Furthermore, if sebaceous glands are activated, accumulated cosmetics in pores can be eliminated through the skin (sweat and oil glands) rather than by the kidneys.

3) Far Infrared stimulates enzyme activity and metabolism – One hour under the hothouse improves metabolism. FIR heat aids in breaking down cellulite – trapped water, fat and waste.

4) Far Infrared may induce the killing of varied pathogenic (disease causing) bacteria, viruses, fungi and parasites.

5) Far Infrared promotes rebuilding of injured tissue by having a positive effect on the fibroblasts (connective tissue cells necessary for the repair of injury). Furthermore, it increases growth of cells, DNA syntheses, and protein synthesis all necessary during tissue repair and regeneration. Excellent for healing burns, scar tissue and skin problems.

6) Far Infrared relieves nervous tension and relax autoneuro muscles thereby helping the body make the most of its intended healing abilities. FIR reduces soreness on nerve endings and muscle spasms, as muscle fibers are heated.

7) Far Infrared strengthens the Immune System by stimulating increased production of white blood cells (leukocytes) by the bone marrow and killer T-cells by the thymus.

8) Far Infrared strengthens the Cardiovascular System by causing heart rate and cardiac output increase, and diastolic blood pressure decrease – Extensive research by NASA in the early 1980’s led to the conclusion that far infrared stimulation of cardiovascular function would be the ideal way to maintain cardiovascular conditioning in American astronauts during long space flight.

Quoted from: http://www.chimachine4u.com/fir.html

TDP FIR treatment is also said to help replenish one’s Chi (those of us who are ill are thought to have less Chi, and therefore less ability to heal). So there you go.

 

Lindsey’s Tummy-Pain Tea

I’ll say it again, just to be loud and clear: I AM NOT A DOCTOR. The herbs I’m about to list may or may not be right for you, and they may interfere or react with other herbs or prescription medications you may be taking. Please be careful when taking any herbal remedy, and consult a professional to make sure it’s safe for you.

tea

That said, this concoction (which I dreamed up on my own based upon what I know about western herbs and their benefits) helps with both my digestion and abdominal pain.

Lindsey’s Tummy-Pain Tea

(For 1 Small Pot)

-3 to 4 tbsp dried peppermint leaf

-1 tsp fennel seed (crush with mortar and pestle)

-2 to 5 cardamom pods (crush with mortar and pestle)

-1 small pinch dried raspberry leaf

-1 generous pinch licorice root (crush with mortar and pestle)

-1 small pinch dried nettle

-1 small pinch dried skullcap

-1 generous pinch marshmallow root

-1 medium pinch cramp bark (crush with  mortar and pestle)

-Optional: 1 to 2 tsp white tea leaves

-Optional: small handful of crushed fresh blackberries (will alter taste)

-Optional: 1/8 tsp dried dill (will alter taste, but helps digestion)

-Optional: 1 pinch dried fireweed blossom (just for colour and to make you feel nice – I gather this myself from local forests)

-Optional: 1/16 to 1/8 tsp white stevia powder concentrate; or a very small amount of dried stevia leaf (to sweeten)

Allow all of these ingredients to steep in 2 to 3 cups of just-boiled water for 5 to 10 min. Pour through a teacup strainer into your teacup to drink, and replace the contents of the strainer back into the teapot to continue steeping. It’ll look like you’ve got the entire forest floor in your teapot, but each ingredient has an effect on the digestive system. The main ingredients (peppermint, fennel, licorice root, and marshmallow root) are all soothing ingredients. The other ingredients draw blood to the digestive system and have anti-inflammatory and anti-spasmodic effects. You can brew this tea with or without the white tea, depending on your caffeine preferences. Also, you can tweak the recipe to your taste as long as you are aware of what each herb does, and what concentrations are safe. Beware of using clover blossoms to sweeten your tea, as red clover can interfere with birth control in women.

The only drawback to making your own tea this way is that each ingredient must be placed into each pot or cup; if you throw large amounts of the ingredients into a bowl and mix it up like a salad, not every cup of tea will have every ingredient and the potency will change. One option for convenience is to fill your own tea bags, which you can purchase empty for that very purpose. You’ll need very large tea bags, though, to allow all the herbs to expand and steep properly in the water.

Hope you enjoy!

Xiu-Mei is an Angel…

Time for an update…

So: after my last surgeon’s visit, I decided I was done with hearing the words “there’s nothing we can do” and “you’ll have to learn to live with it.”  While I’ve been trying alternative routes to health all along through herbs, gentle yoga, and meditation, I decided I needed an expert on board. So with great expectations, I walked into the office of a lovely woman who practices both Western and Eastern/Chinese medicine.

I was greeted by potted plants, shelves of tea, herbs, chinese teapots and teacups, an invitation to don some comfortable slippers, and the presence of several wooden foot-massagers under the chairs in the waiting room; I was also given a cup of fresh, cool water to drink.

Xiu-Mei saw me for my first consult and her gentle presence was a balm in itself. She patiently took my history, and unlike every Western doctor I’ve seen, identified my battle with C. Diff. as the main cause for my present state. Every other doctor felt that since I had beaten the infection, it was now a non-issue, but Xiu-Mei felt differently. She considered not only the damaging disease, but the hammer-like drugs used to treat it, and the length of time I was on them. These were the very concerns that I have held for the past 2.5 years, and I felt for the first time that I was finally with a doctor who was on the same page.

Xiu-Mei saw me as a whole being, past, present, and possibility. She saw me as a body, energy, and psyche. Her questions touched on every aspect of my life, not just my physical well-being. In the end, Xiu-Mei saw a broken body and a stressed psyche. Her main concern was not just that my digestive system consistently malfunctions, but that my immune system can barely respond as it is supposed to. The strange hives, the scratches that refuse to heal, the bone-crushing fatigue and constant nausea – all this is related to my over-taxed immune system. Xiu-Mei also confirmed that I was on the right track by trying to eat a light Paleo/Crohn’s diet and cooking all my fruit and veg. Xiu-Mei also identified dairy, most grains, and dense foods as harmful. “You simply cannot digest a regular meal” she said. So seafood has become my best friend. Crab, ground shrimp, and light fish have become my main protein sources and most days, they sit in my stomach like a dream (compared to what I usually feel after eating protein). White rice is also a part of my diet; whole-grain or brown rice irritates my intestines too much. This may not be considered strictly Paleo, but my body really needs this carb source to battle the severe fatigue I’m struggling with right now, especially since other forms of protein are too heavy for me.

I’m still existing on one meal per day right now, but thanks to Xiu-Mei, I’ve learned to eat it in parts – 1/3 at a time, over three hours. This means I can make sure I’m getting a balanced meal, but my system only has to deal with very small amounts of food at a time. The rest of the day, I drink water and tea. I also take several Chinese herbs Xiu-Mei prescribed for me to rid my liver and body of the toxins still stored there from when I was on heavy antibiotics and pain-killers. The herbs also help my body to digest food. I’ve worked my way up to a high dose of probiotics, and take omega-3 fish oil to promote the healing and strengthening of tissues.

Xiu-Mei also uses acupuncture to treat me, and places an infrared heat lamp over my abdomen to draw blood flow to my digestive system. As far as pain relief goes, it works! After my last visit, I’m going to start a B-vitamin complex again since my intestines don’t seem to be absorbing those vitamins from food. I’m pretty sure I’m anemic again too, judging by my fatigue levels, and Xiu-Mei suggested I ask my Western medicine doctor to order blood tests to check my iron levels.

What impresses me most is that Xiu-Mei makes no bones about the fact that she can’t cure me, but in no way has she given up on me. She believes I can have a much better quality-of-life and that her techniques can help my system to heal and strengthen itself. She treats me as a complete being which is so refreshing – I can’t express how good that feels. She’s given me hope  🙂

Update November 2012

Hmm, It’s been a while, hasn’t it? Truth be told, I’ve been feeling dreadful. I did the barium swallow, and got another handshake and a “Try to learn to live with it” and a “Good luck with that”. AND NO DIAGNOSIS. And they’re not going to bother with any more tests, because it’s all such a mystery, and the ones they have done have shown that I’m not immediately dying and will probably live, albeit uncomfortably.

And my doctor quit and is moving. I’ve been calling every clinic in town for months now, and not one doctor is taking new patients. I have learned that about 9000 people in a city of 22,000 are currently without doctors. I am now one of the many who have to show up at the emergency room for prescription refills (as we have no walk-in clinics) and endure the glares of unhappy doctors and nurses who would really rather I wasn’t there, clogging up their ER, and endure the well-intentioned but clearly absurd ministrations of  young residents who would like to change my meds, pull me off of some, put me on other new ones, and test me yet again for celiac disease (I’ve tested negative four times, twice by bloodwork, and twice by biopsy).

So I’ve been pretty bummed out. However, there is some good news: I applied to the Mayo clinic in Rochester, and they’d like to see me. The bad news, is that I now have to beg and borrow thousands of dollars (as I’m still unable to work) to actually go there for diagnosis and treatment. I’m hoping for a miracle.

If said miracle occurs and I’m able to go, I do have reason to hope that they’ll be able to help me. They are one of the #1 places in the world to go for abdominal issues, and they’ve been doing research on C. Diff. and its after-effects.

So cross your fingers for me!!!

The Prometheus IBD sgi Diagnostic Test

I’ve only just discovered a new diagnostic test from Prometheus Labs in San Diego, California. It’s called the Prometheus IBD sgi Diagnostic (4th generation). It can diagnose IBDs such as Chron’s Disease, Colitis, etc., distinguish between Irritable Bowel Disease and Irritable Bowel Syndrome, give you a Chron’s prognosis if you test positive for it, and help guide you and your doctor as to how to proceed. They also have a test for Celiac disease, as well as many other gastrointestinal diseases, and can test to see if your medications are at the right dosage for you and if they are being effective.

And here’s the very best part: it’s a blood test! No scopes through one’s various orifices, no swallowing or injection of slightly radioactive substances, no painfully prodding ultrasound techs, and no risk of sterility from x-rays or CT scans. They get you to draw some blood in your local blood lab using a collection kit they send you, you send it back to them, they look at it, do some genetic testing as well, and voila – you’ve got a fairly reliable answer.

Here’s the bad part: it’s pricey. If it’s not covered by my federal or provincial healthcare, I’m saving my own money to buy the test anyway. It must be prescribed by your doctor, and it costs around $700.00. If you want extras, like the Celiac test, etc., it’ll cost even more. The prices are a bit of a tooth-grinder, but to me, it’ll be so very worth it. It may be able to get rid of a lot of doctor’s guesswork and unnecessary procedures, and if it comes up with a reliable diagnosis, it’ll also save me a lot of time (just consider, fellow Canadians, the amount of time we spend on waitlists for surgeon’s appointments and procedures) and probably a lot of pain.

And as you know, fellow C. Diff. survivors, we are a group very prone to GI diseases, conditions, and cancers. We are also among the most difficult group of people to diagnose, given that the bits of us that hurt are all deeply internal usually still inflamed from the C. Diff., hard to get at, difficult to see, and cause symptoms that are often vague at best and impossible to describe at worst (“Well doc…um, it hurts sort of here…You know, near my belly button? And then it really hurts a lot in a sort of north-easterly direction over here, and there’s often a twinge on this side, over there… And no, it doesn’t matter what I eat… And also, my stomach aches make my back hurt. Yes! I AM serious!”)

Of course, I am no expert on diagnostic tests (except for how nasty most of them make me feel) so don’t take my word for it. I’m not endorsing Prometheus Labs – I haven’t even taken their test yet. The best thing to do is to take a look at the Prometheus Labs site for yourself. They’ll send you a price list if you ask for it, but it’s up to you to ensure your federal, provincial, territorial or private health insurance will cover the cost, so don’t get all test-happy and request “one of everything.” Also, they don’t do private testing – your doctor will have to authorize and request the testing and it will be your doctor who receives the results.

www.prometheuspatients.com

Good Luck!

 

On the Dignity of Trudging…

Trudge: Verb.  To walk slowly with a lot of effort over a difficult surface.

There is dignity in trudging, I believe, mostly because it means you’re still moving and going somewhere despite stacked odds to the contrary – even if you are headed in completely the wrong direction. So I continue to trudge through each day and meal, through the hospital entrance, the door to the doctor’s office, the waiting area of the surgeon. Granted, my trudge is a bit gimpy, maybe a little circuitous at times, but dammit, I still trudge.

Most recently, I trudged through the hospital to have another gastroscopy with biopsies. The biopsies from my stomach and the first few inches of my small intestine came back clear for cancer, Chron’s, and Celiac. This, surprisingly, was a crushing blow. Believe it or not, I was really hoping they’d find something. No, dear reader, I am not a masochist. I am simply tired of tests and procedures and sedatives that make me completely freak out (for no apparent reason) when I wake up (as in a major “i’ve-just-scared-the-living-daylight-out-of-those-little-kids-awaiting-their-dental-surgeries-over-there” freak out).

Thus it is with great relief and much hope that I’d like to introduce a diagnostic test I’ve only just heard of (drumroll please)… The Prometheus IBD sgi Diagnositc. Ta da! I’ll explain it in its own post – read on!