Category Archives: The Beginning or “Why I’m Writing This Blog”

Anyone Want A Forum?

Hi Everyone,

Since so many people are finding their way to this blog and are finding help (or at least support and reassurance) from others here, I’m considering putting together a forum site for C.Diff. survivors. This would make posting and chatting more organized, and finding and sharing information much easier, and it may help in coordinating our efforts to promote awareness and change. If people are interested, I’ll go ahead and put the site together, so let me know by replying to this post with a “yes” and with any suggestions you might have for the site, such as sections you’d like to see.

Thanks everyone – you’re a really special bunch, you know that? You may not feel it, but you’re all so strong 🙂

Luv Lady P

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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!

 

The Adventure Begins…

Who I Am:

I’m a philosopher. No, seriously, I am. What can I say, we all make poor career choices at one time or another. I’m also a crafter and fiber-arts enthusiast (meaning I find crocheting comforting, and feather mobiles satisfyingly fluttery). I am loyal servant and kibble-provider to my canine companion, and recently spent $80 on a dog bed and am not ashamed of it. I have no problem with making my home into a fire-trap by feeding my book addiction. I also covet and collect audiobooks, perfect for those times when covert-novel-reading is required. I live in the far north of Canada, hate cold weather, and try to grow things every summer without much success. I love all things steampunk and like every colour except brown and gray (unless they’re sparkly). I’m nearer to thirty than twenty, but rarely admit to it. I have an extensive collection of children’s books because they make me smile, and not because I have any children to read them to. I am a serial-first-dater: I find myself uncomfortable and bored by the middle of a first date and never call back or answer further emails. I am mostly unaware of my surroundings, in that I notice birds and trees and oddly-shaped clouds much more than I notice people or street signs. This is the cause of my oft-worn expression of bemusement and my best lost-puppy look.

I’m also a C. Diff. survivor. If you don’t know what that is, I’ll post my story soon. Suffice it to say, the life-threatening infection I thought I had beat causes me enough problems one-and-a-half years later to result in constant pain, extreme abdominal swelling, food intolerance, and unemployment. At my wit’s end, I turned to that great and ever-expanding repository of folk-wisdom and pseudo-scientific fact: the internet. The advice so magnanimously given was to try the BRAT diet, the Allergy-Elimination diet, the IBS-friendly diet, the Atkins diet, the Medditerranian diet, the Gluten-Free (or Everything-Is-Gritty) diet, the Vegan diet and the “I’m-So-Frustrated-With-Diets-I’m-Going-To-Eat-Marshmallow-Cookies-For-Every-Meal” diet. Interestingly, none of these worked, which is surprising given that marshmallow cookies always seem like a good idea.

Then I came across the Paleo or Primal diet. I was intrigued to discover that this was not actually a diet: it was a lifestyle, and that people were successfully surviving on it, even liking it. I discovered this way of living and eating during a particularly bad night. In so much pain that I was rocking back and forth and with an abdomen so distend that my skin hurt from stretching, I rued the simple dinner I had eaten of toast and peanut butter and wondered how I was going to maneuver to lay down, much less sleep. While performing my nightly cure-search, I stumbled across a post on a forum by someone who had also survived a severe C. Diff. infection, and found relief from the lasting effects by “eating Paleo.” I was sold. I immediately purchased six books on the topic from Amazon (my usual procedure when enthused by a new discovery) and commenced to live Paleo.

This blog will be a record of my attempts at this lifestyle as well as an understanding ear for those experiencing a life affected by C. Diff. I’ll do my best, record my failures, triumphs and adjustments, and let you know what works for me. There will undoubtedly also be random posts of sheer happiness and blah-ness, depending on my mood. Wish me luck!