Who I Am

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, seamstress, embroideress, and fiber-arts enthusiast. I am loyal servant and kibble-provider to my canine companion, and once 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 used to live in the far north of Canada, in the Yukon Territory, even though I hate cold weather. I love all things fuzzy-animal-realted, as well as anything victoriana, vintage, steampunk and quirky. I like every colour except brown and gray (unless they’re sparkly). 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. 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 reliance on GPS.

I’m also a C. Diff. survivor. If you don’t know what that is, check out my story on this blog. Suffice it to say, the life-threatening infection I thought I had beat causes me enough problems 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.

The other thing I found on the internet was a growing number of people diagnosed with C.Diff. that had been left by the medical community to try to figure out how to manage their lingering symptoms on their own. I found people in situations just like mine and worse, frantically searching for answers. And I found a lot of C.Diff. sufferers and survivors repeating the refrain “I feel so alone.”

This blog will be a record of my attempts at figuring out how to live after C.Diff., 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, blah-ness, and possibly despair – depending on my mood. Wish me luck!

5 thoughts on “Who I Am

  1. Happy-er new year to you! How is the Paleo diet doing for you, ok? My boyfriend, who was just diagnosed 2 months ago with stage 3b lung cancer wit mat. to the lymphs, has today been diagnosed with C-diff. Happy New Year….Normally at 145-150, his weight dropped with the chemo and radiation to 131, and plummeted over this last weekend of diahr. and vomiting to 123lbs. The concentration camp look….omg. I had never even heard of c-diff before today. I will be up all night reading from the forums you talked about, while praying that I don’t come down with it. I have been at his side through over 30 days and nights of hospital stays (when they see us coming they automatically haul a cot into whatever room they place him in for me)! Plus I have been on antibiotics for a very long time for sinus infections, which I understand can put my at a higher risk than the average person. Plus I have a 92 year old Mom that I live with…..geez! Best of luck to you, sure hope you can get the pain behind you(no pun intended, lol), and get better treatment from Mayo too!

    1. Wow, Carolyn, I’m so sorry to hear what you and your boyfriend are going through. My heart goes out to him. You both would benefit from MASSIVE doses of pre- and pro-biotics. Buy the best combo capsules you can afford with high concentrations of various strains of probiotics. If they are upsetting to you or your boyfriend’s stomach, work your way up by the billion. For example, I used to be able to only handle 2 billion actives per day (you’ll see the dosage of each capsule on the bottle) so I took two capsules with a dosage of 1 billion active cells twice daily. Now I’ve worked my way up to three capsules of two billion daily for a total of 6 billion daily. For me, this is just a maintenance dose – it helps to ensure there is enough good bacteria in my system to keep the C. Diff. bacteria in check and prevent relapses. For you and your boyfriend, I’d recommmend around 10 billion daily. I know it sounds like a lot, but break it up into several capsules taken throughout the day and evening start at 5 billion per day and work your way up to 10 billion per day over a week’s time. This makes it much easier on the stomach, especially if your boyfriend is vomiting. If he vomits up a capsule before it can be properly digested, have him take another to replace it.

      Also, I’ve found that Enteric Omega-3 fish oil capsules are a real help. An “Enteric” coating on the capsule means that it dissolves in the small intestine rather than the stomach, so you’re getting those healing oils right to where they need to be. It will say “Enteric” or “Fish-burp-free” right on the bottle. The Omega-3 fish oil sounds nasty, but it helps to soothe and heal the intestinal tissues that are under attack in you boyfriend’s system, and helps them to rebuild themselves once the C. Diff is under control. I take the generally accepted maximum recommended dose daily. It will also help your boyfriend’s cardiovascular system and brain to stay healthy through all the drugs they’re probably pumping into his veins right now.

      Also, if your boyfriend can handle liquids, have him drink this tea: 1 tbsp of Fennel seeds, 2 or 3 tbsp of peppermint leaves (or 1 pure peppermint leaf teabag), in 1 mug of boiling water. You can find the fennel seeds in the spice aisle, and the peppermint leaves at a herbal store, or the peppermint teabags in the tea aisle at your grocery. The two together in strong doses really soothe the stomach and intestines and help a little to stop the constant spasming of the intestine. It’s even better if you can break up the Fennel seeds a little with a mortar-and-pestle. You can carry the herbs with you in ziplocks, and put the fennel and peppermint in a large tea-ball to dunk in a cup of boiling water at the hospital. Don’t worry – it actually tastes really good – sort of a mint and licorice flavour with a really smooth aftertaste. If you want to sweeten it, add a tiny bit of Stevia leaf or stevia powder which you can find at your herbal store. The reason I suggest this is because the C. Diff. bacteria feeds on sugars an carbohydrates, so even honey will just feed the C. Diff. Stevia is not actually a sugar – it only tastes sweet – so it will not give the C. Diff. bacteria any nutrients to grow from.

      As far as food goes, it sounds like your boyfriend needs everything – protein, carbs, fats, and veggies. If his diet is really restricted due to his illness, I’ve found tinned crab meat to be super-digestable, if he’s not allergic to crab. It’s so light and easy on the stomach. Mix it with a little mayo, like you would tuna, to get some good fats into him. As for carbs, stick to rice and quinoia, not corn, wheat, barley, or any whole grains other than the rice and quinoia. I know this goes against everything you hear about whole grains, but I’ve found that whole grains do a number on my intestines – they just kill me! My intestines just can’t handle them yet. Also, all veg and fruits should be cooked. Instead of a raw apple, peel it and bake it with cinnamon until it’s soft – that sort of thing. Raw fruits and veg are actually hard to digest and create gases in the digestive system that just make the C. Diff. problem worse. Eating them cooked (baked or steamed) gives you the nutrients and fibre in a much easier-to-digest form.

      Lastly, if your boyfriend is on Flagyl (Metro or Metronidazole) or Vancomycin (Vancocin) and if you end up on the same if you get C. Diff., it’s going to save your life, but it’ll still really mess up your system. It’ll be especially nasty for your boyfriend if he’s undergoing chemo as well. THIS IS NOT TO SAY YOU SHOULDN’T TAKE IT IF YOU HAVE C. DIFF. – YOU SHOULD, AND SO SHOULD YOUR BOYFRIEND. You just have to get the toxins out of your system after you’ve beaten the C. Diff. The probiotics and omega-3 will help, but also start a regimen of serious antioxidants like green tea, blueberry, acai berry – things like that. Also take milk-thistle (only if it’s deemed safe for your boyfriend) because it helps to rid the liver of the toxins stored there. The milk-thistle may be a little harsh for your boyfriend, so only take it when he’s gained some weight and when you’re sure it won’t interfere with any other medications he’s taking.

      I hope this advice helps. I know I’ve given you a lot – I just can’t imagine dealing with C. Diff. and cancer at the same time. Everything I’ve advised are things that I’ve tried on myself and have found helpful. Your boyfriend has a long battle ahead of him, and I wish you both all the strength and hope and luck in the world. Try to keep positive, and keep experimenting to see what brings him relief (for example, hot baths can give amazing pain relief when it comes to C. Diff.).

      All the best to you both – if you have time, I’d love to hear from you to know how you both are faring.

      Many hugs,
      Lindsey

  2. Hi LadyPrimal- I am a producer at a show in NY and we are doing a show on Superbugs and I am looking for a C Diff survivor to share their story to spread awareness about this disease. I am hoping to get in touch with you- you can email me at jessica.siegel@katiecouric.com. I look forward to speaking with you. Thank You, Jessica

  3. I found your story touching and I chose to write my essay on your story! I am currently researching C. Diff for my project and have read all the rare information I can find and your story gave me an insight to how C. Diff affects its subject. I hope the pains stop and wish you all the luck I can give!

    From,
    A hardworking student

  4. Thankyou, thankyou, thankyou. After several months of c.difficile with chronic pain, nausea and everything else that goes with this terrible disease, I have discovered that there is little help from the doctor if metronidazole and vancomycin fail. Hospital will not do colonoscopy on patients with c.difficile. I am now trying to heal myself using probiotics,honey, natural yoghurt and a very bland diet. No improvement yet. I honestly feel that as I am elderly, I am not a priority. Like many others, I sometimes feel that dying would be better than living in constant pain and worry . The National Health service in the UK is stretched to the limit. So few hospital beds available that people are being pushed through the system and sent home. I honestly don’t know where to go for help.

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