Tag Archives: colitis

Infecting others…

Terribly worried today. My younger sister, whom I live with, has been suffering from diarrhea for almost three weeks now after every attempt to eat. In the last week, she has worsened considerably and is experiencing abdominal pain, nausea, sweats, and the occasional fever. It looks like C.Diff to me, but I’ve been holding out hope that it’s something else. Stool tests have been done, blood work has been taken, but her results aren’t in yet.

If it is C.Diff, it means I need to get myself tested again. I was never tested again after my lengthy treatments for C.Diff. I asked to be, but my doctors told me there was no point because I had fairly normal stool at the time, and my IV antibiotic treatments had gone on for so long – they seemed to think that nothing would have survived that. I’ve always felt differently. Given the symptoms and post-infection complications I experience, I’ve always felt that I’m a carrier of the bacteria, though not always experiencing the severe diarrhea. I’d like to be tested with the newer, more sensitive test Rhonda mentioned in a different post. The trouble I always run into is with the labs. They see a non-watery stool and refuse to test it, because they seem to believe that a person can’t have C.Diff if their stool has any degree of formed-ness. I’m going to speak to my doctor and get him to send a letter to the lab with my sample explicitly asking for testing to be done with the newer test, regardless of how my sample looks at the time. If I still carry it, I need to be treated again, and I need to know so that I can best protect the people around me.

And if it is C.Diff, and if my sister didn’t pick it up from me, then I need to be crazy-careful that I do not pick up a new infection from her. It’s so hard to see her like this – my worst nightmare come true. My biggest fear has always been that I might, through some oversight, cause one of my family members to become infected. It really brings the “leper” feelings back, in that I keep thinking I ought to just live alone and separated from others so that I can’t infect and kill anyone. Nasty, nasty disease. But I have to square my shoulders, keep those thoughts out of my head, keep up the bleach cleaning routine, and do my best to help my sister. At least I know some tricks for abdominal pain relief!

I’ll keep you all updated on how this turns out.

-L

I. Am. So. Sorry…

I have been off-line, out-of-commission, non-communicative, and just generally not here, and I apologize for that.

There were a lot of contributing factors: my abdominal pain levels have been bad, my arthritis-like symptoms have been literally crippling, the neuroma tumors in my feet have also been very crippling, my depression has worsened, and my anxiety levels have been off-the-charts. Someone important to me was prevented from suiciding just-in-time (again), and while that person has again decided to live, I am not okay. I do not do well with near-suicide or suicide situations – especially where people I really care about are concerned – and mentally, they shatter me. I have had to face these situations several times before, and each time I face another, I shatter into tinier pieces and it takes longer to put myself back together.

Between all this and the limbo I’m currently in regarding medical testing and treatment (I seem to be going nowhere), and my soon-to-be-dire financial situation due to my unemployability, I would like nothing more than to crawl under a rock and hide. I feel the limitations of my body very keenly right now, and I feel utterly trapped. I feel old, and broken, and weak, and exhausted, and fuzzy-headed, and un-pretty.

Know what I want? I want to be a young woman with a bright future again – like the young woman I was before C.Diff. I want to finish my education. I want my own little house where I answer to no one but myself. I want the mortgage that comes with it, and I want to have to worry about whether to paint the front door red or blue.  I want to have a husband who will love me and help me to feel less alone, and children to feed and read bedtime stories to. I want a career where I can feel like I’ve accomplished something every day. I want another dog, because the antics of my pooch give me something to smile about every single day. I want a simple, normal life. I don’t want to be alone on the outside-looking-in anymore, waiting for something to happen or for some bit of information so that I can be healthy enough to have all those things.

And if I can’t be healthy and have those things, I want to be able to not want them; I want to be able to let those dreams go so that the lack of their fulfillment won’t hurt me anymore. So if you have any of these things, be thankful. Be joyful, be ecstatic at your good fortune and your blessedness. If you’re reading this and you have health, be out-of-your-mind-crazy with gratitude. Celebrate your freedom – your freedom of movement, the freedom to have choices, and make decisions, and have dreams. For now, I’ll keep hoping – no, believing – that someday, I’ll be able to celebrate with you.

-L

Would you like Fibro or Arthritis with that?

After seeing three new specialists and having new and different tests done, the following has recently been established:

1. I most likely have Crohn’s or Colitis. Exactly which one, is yet to be determined.

2. I also most likely have Rheumatoid Arthritis and/or Fibromyalgia to contend with on the side.

I’m told that it is entirely possible that I may have had these conditions in a dormant form before my C.Diff infection. The damage the C.Diff and the treatment drugs did to my body may have caused these conditions to become not only active, but prominent. This seems to make sense; after all, C.Diff takes its toll on all of the body’s systems, including the immune system. This may explain why many of us survivors experience serious auto-immune issues afterwards. These diagnoses would explain a lot, but some of the abdominal symptoms I experience would not be accounted for, so there’s still some further investigating to be done. I’ll keep everyone posted…

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!