Tuesday, March 17, 2020

COVID-19 & INTERSTITIAL CYSTITIS

COVID-19 & INTERSTITIAL CYSTITIS

Hello my fellow ICers!  If this is your first visit to my blog, welcome!  You can click on older posts at the bottom of the page for IC Friendly recipes and other resources.

So, this is a scary time we are facing right now with the threat of COVID-19.  Everyone is running out to grocery stores, fighting over toilet paper and bottled water like the zombies have taken over and those items are our last chance for survival. 

While we, of course, have to concern ourselves with most of the things on everyone's lists, there are a lot of things on those lists that simply aren't an option for us and there are a lot of things that should be on our lists that won't be on anyone else's. 

It can be very difficult to not get swept up in this panic culture and to keep a level mind during times of stress so I hope that this post will be a helpful resource. 

First I am going to list the IC relevant things other than food that you should make sure you have enough of if you need them*:

*Note: This is not an exhaustive list of everything you need – this is specific to IC.

COVID-19 & IC EMERGENCY PREPAREDNESS SHOPPING LIST – OTHER

1) ALCOHOL SWABS (or if they are out, try rubbing alcohol and cotton balls)
2) CATHETER TRAYS (if you can afford it, get enough for 4-6 weeks)
3) CATHETERS (my catheter trays usually don't come with the catheters in them and when they do they are too big – I use the MED-RX Sterile non-latex ROBINSON PLUS 8FR X 16" Urethra Catheters:  Ref 67-5108, Lot 110427 – they are stiffer than most of them but much smaller and easier to insert)
4) ******PRELIEF****** PLEASE HAVE AT LEAST 3 BOTTLES OF PRELIEF AT HOME!  I always stress having extra but now that is especially relevant because we may not be able to get as much of the food that requires fewer Prelief to consume
5) ***PAIN MEDICATION*** MAKE SURE THAT YOU ARE STOCKED UP ON YOUR PAIN MEDS, ESPECIALLY YOUR PRESCRIPTION ONES & MAKE SURE YOU HAVE REPEATS
6) ***ELMIRON*** MAKE SURE YOU HAVE ENOUGH ELMIRON (it's really easy to mistake how many days you have left depending on how many you take a day – for me, I take 3 everyday so it might look like I have enough left but really you need to count them because I often don't realize I'm short until it's 2-3 days before I need a refill – for this one as well, make sure you have repeats)
7) LIDOCAINE 2% GEL (Xylocaine 2% - topical anesthetic – behind the counter but non-prescription) – this is especially relevant for those with vulvodynia
8) LIDOCAINE HYDROCHLORIDE 1% INJECTION USP (Xylocaine 1% - local anesthetic) – this is especially relevant for those who perform their own bladder instillations and/or administer their own trigger point injections
9) NEEDLES (if you do your own trigger point injections or IM injections for medications such as dimenhydrinate/gravol)
10) A WATER FILTER (as long as you live in a place where the tap water is safe to consume, a water filter is a better strategy right now than bottled water [best bottled water for ICers is Evian] because that is one of the items that people are hoarding and it is hard to find – a good and affordable filter is the NSA water filter which can often be found on eBay)
11) HAND LOTION (with how often we use the washroom/wash our hands, we tend to go through a lot of this so make sure you have enough in case of a lockdown so you don't end up with cracking and bleeding, vulnerable hands – the only one I can use due to all of my allergies is Cliniderm Lotion)
12) TOILET PAPER (this is a difficult one to find especially since we need one that is non-irritating – the only one that I use is the President's Choice Super Soft Hypoallergenic Bathroom Tissue ***This is especially relevant for those prone to or suffering from vulvodynia***)
13) MEDICAL GLOVES (especially if you use any intervaginal medications – I recommend non-latex powder free vinyl gloves – these are also good if you have to go out in public)
14) BAKING SODA (an absolute essential for ICers – make sure you have enough!)
15) LACTAID ULTRA (if you can have dairy and require it)
16) ****BATTERIES**** THIS IS MANDATORY FOR ANYONE WITH AN INTERSTIM IMPLANT – YOU NEED TO BE ABLE TO USE YOUR EXTERNAL REMOTE TO OPERATE YOUR IMPLANTED DEVICE – MAKE SURE YOU HAVE EXTRA!!!
17) SURGICAL MASKS (most of our immune systems are unfortunately compromised so if you can find some, of course the N95 is the holy grail but if not, the disposable surgical masks are great to wear anytime you go out in public – just make sure that you aren't wearing the disposable ones more than once or you could put yourself at more risk rather than protecting yourself from the virus)
18) ZIPLOCK FREEZER BAGS AND CONTAINERS (for freezing fresh food such as organic blueberries and prepared homemade food such as organic asparagus soup)
19) ZIPSICLES (for making freezies from organic IC Friendly juiced organic fruit and/or veggies or if you can have it without any issues, Bremner's Organic Blueberry Juice)
20) PADS (if you struggle with stress incontinence or if you menstruate and have vaginismus and thus can't use tampons, you should definitely make sure you have enough to last in the event of a lockdown)

Now I will go over a few different kinds of food but since I know that everyone's IC Friendly diet is a little different, the list won't be long – I'll share what I am doing about food on my InstaStories; you are welcome to watch those and ask me questions if you want to know more J

COVID-19 & IC EMERGENCY PREPAREDNESS SHOPPING LIST – FOOD

1) CHOICE ORGANIC PEPPERMINT TEA (an absolute essential for ICers with IBS, especially IBS-D – you can read my post "First Line of Defence for ICers with IBS" to find out more)
2) ORGANIC RED (BELL) PEPPERS (this is one of the most universal IC friendly foods and it is our BEST source of vitamin C – since it's fresh and will not last long I recommend juicing some and freezing the juice – I know from experience that it freezes and defrosts really well and you can add other IC friendly veggies in the juice as well such as organic cucumber, organic romaine lettuce, etc.)
3) FROZEN ORGANIC BERRIES (the ones you can have without pain – don't forget your Prelief!) – if you can't find them frozen, get fresh and freeze some yourself – if you can have organic raspberries, they are a good source of vitamin C as well
4) IC FRIENDLY ORGANIC CEREAL AND OATMEAL (look at my previous post about this for some good suggestions)
5) TOLERANT ORGANIC RED LENTIL PASTA (ONLY if you can have lentils without pain – this pasta is a great thing to stock up on right now and it's full of nutrients, especially iron which we don't have many sources of – *if you have IBS like me, start off with only 2 pieces a night with your biggest meal and tons of peppermint tea*)
6) RJ'S BLACK LICORICE (ONLY if you have tested it successfully in the past and can have it – this is a staple of mine and it is great for right now because it doesn't require refrigeration and in only 5 pieces you get 10% of your daily iron – *make sure to pair this with something with vitamin C so your body can absorb the iron such as organic defrosted raspberries or red pepper*)
7) CANNED IC FRIENDLY FOODS WITH NO PROBLEM INGREDIENTS (okay, so… this basically doesn't exist but I found a couple of single-ingredient canned foods that are okay such as organic pureed pumpkin)
8) ORGANIC BASMATI RICE (stock up on this bad boy because it is IC and IBS friendly and satiating)
9) MAISON ORPHEE FINE GREY SEA SALT (I have found this to be the best and most bladder friendly salt or sea salt out there and salt isn't something that generally jumps to mind when you think of emergency preparedness but at least for my food, I need it)
10) PRAIRIE HARVEST ORGANIC PASTA (if you can have gluten) – I have personally found this organic pasta to be the most IC friendly and the most delicious
11) CORN THINS AND ORGANIC RICE CAKES (some of my favourites are Non-GMO Real Foods Corn Thins and Lundberg Organic Brown Rice Cakes – these can be eaten with hardly any Prelief and are very bladder friendly and are non-perishable which is perfect for COVID-19 emergency preparedness purposes)
12) LOTUS FOODS ORGANIC BLACK FORBIDDEN RICE NOODLES (these are amazing and again, non-perishable)
13) IC FRIENDLY OILS (the ones I use are organic safflower oil, grapeseed oil and organic sesame oil*) *I couldn't have organic sesame oil until my ninth year of treatment
14) FROZEN IC FRIENDLY VEGGIES (great for making soup, stir-fry, etc. – I always have organic asparagus and organic green peas in my freezer)
15) ORGANIC CRACKERS (wheat crackers if you can have gluten and rice if you can't – some of my favourites are Savor Organic Saltines, organic matzo and rice crisps)
16) ORGANIC RED POTATOES AND ORGANIC ACORN SQUASH ****IF AND ONLY IF YOU CAN EAT THEM WITHOUT PAIN**** (for me, it took about 7 years of treatment and medication before I could have these so please, do not cause yourself pain, but if you can have them, stock up since they are full of nutrients and don't need to be refrigerated before they're cooked)
17) TOASTED NORI (this is a great snack to have and if you have sushi rice and an organic cucumber, you can even make a little kappa maki if the mood suits you - I like to brush the nori with organic sesame oil and toast it in the oven to make my own IC Friendly version of seaweed snacks)
18) ORGANIC CAROB POWDER (for when you are dying for something sweet and satisfying – with this you can make hot "chocolate", "chocolate" mug cake, "chocolate" milkshakes, etc. – feel free to contact me to learn how to make these)

Since there are so many variations of what is safe for our bladders, I'm going to stop there in terms of food, but hopefully I've helped to spark some ideas of what you can stock up on to prepare for this rapidly escalating COVID-19 situation. 

I would not recommend that you test any new foods during this time since you may not be able to receive the treatment you need if they cause a flare.  Always make sure that you're drinking plenty of water, that you're taking your Prelief (and Lactaid when appropriate) before you eat and that you're getting at least 8 hours of sleep a night. 

Do your best to take time to relax your body and your mind:  There are many great apps out there to help you; some that spring to mind are the Calm app, Simple Habit and Mindshift. 

Diffusing essential oils like peppermint to purify the air is also a good idea.  I'm always here if you have any questions.  Stay safe and flare-free everyone!  Take care! J

Sincerely,


Kat 😘


Friday, April 6, 2018

My New 4-Day Rule For Testing New Foods

Hello my fellow ICers!  I hope this Friday finds you well.  If you are familiar with the standard Elimination Diet, it advises to test new foods in small and increasingly larger quantities for three days in a row to see if they irritate your IC or are safe to add into your IC-friendly diet.  This is the rule I have gone by for nearly 10 years, but a recent experience has completely changed my protocol.  Three days is not enough.

When I re-tested organic green seedless grapes earlier this year, Day 1 was okay, Day 2 was a little iffy but it didn't cause a flare so I continued onto Day 3.  Day 3 caused zero irritation, so I got very excited and added it into my diet as a safe food, or so I thought.

Day 4?  ONE OF THE WORST FLARES I HAVE HAD IN YEARS.  So please, when you do the Elimination Diet and/or test new foods, please add them in in an increasing quantity for FOUR days straight, not three.  I have had similar experiences with other foods I have tested since then so have made it my standard rule.  I highly suggest you do the same.  It's really important to be sure and it's also important to do the Elimination Diet more than once. 

Looking back, when I first came out with my (faulty) results the first time around, almost everything in my diet was an irritant.  It was just that it was keeping me at a consistent level of pain so nothing stuck out as a problem.  At least 15 of the foods I was eating back then were MAJOR irritants and if I ate them today, I would end up in so much pain that I would be vomiting, crying and fainting on the bathroom floor in an hour or less. 

I realize that I am especially sensitive with an especially bad case of IC, but that is why I created this blog:  For the super sensitive ICers.  Most of the other IC blogs out there are unfortunately not helpful to me when it comes to food because I'm too sensitive for what they advise.  Of course, everyone with IC is different and that is why the Elimination Diet is so important, because individual results differ greatly. 

I wish you all the best testing new foods – if you try out the 4-day rule, please comment to let us know your experience!   Good luck!

Sincerely,


Kat 😘

Friday, March 30, 2018

Kat's IC Friendly Bran Muffins

Hello fellow ICers!  I haven't had these muffins in ages because it is extremely difficult to find organic wheat bran where I live and unfortunately, non-organic wheat bran really flares my IC.  They're delicious so I wanted to share them with you! 

As a disclaimer, this recipe is only okay for ICers that are okay with butter.  I included the brands of some of the ingredients because these brands consistently don't bother me.  Even though I am usually okay with butter, sometimes if I have a different brand, it will flare me.  I've also had a hard time with different kinds of sea salt and especially with egg whites so I hope that if you're in the same boat, these brands will be safe for you too!

I generally cut the recipe in half since I live in a 2-person household, but if I'm going to a gathering or a potluck, I make the whole recipe and have something 'normal' that I can enjoy with others.  These bran muffins are moist and delicious.  I hope you like them!  Enjoy! 😊


Ingredients:
  • 1 cup filtered boiling water
  • ½ cup Lactantia salted butter
  • 3 cups organic wheat bran
  • 2 ½ cups organic all purpose flour
  • ½ teaspoon baking soda
  • 2 teaspoons Maison Orphée Grey Sea Salt
  • 4 Homestead Farm Free Run XL egg whites (or if you can have egg yolks, 2 large eggs)
  • 1 ½ cups old fashioned brown sugar
  • 2 cups Lactantia 1% Lactose Free Milk

Directions:
  1. Preheat oven to 400° F and put 24 standard sized muffin cups in your muffin pan(s).
  2. Stir ½ cup of Lactantia salted butter into 1 cup of filtered boiling water until melted.
  3. Stir in 1 cup of organic wheat bran and set aside. 
  4. In a separate bowl, combine the organic all purpose flour, baking soda and grey sea salt.
  5. In another large separate bowl, beat together the 4 XL egg whites, brown sugar and lactose-free milk.
  6. Once that is combined, mix in the wet bran mixture that you set aside in step 3.
  7. When combined, add in the dry ingredients and then 2 cups of organic wheat bran.  Stir only until moistened.
  8. Spoon the mixture into 24 muffin cups in your muffin tray(s) evenly.
  9. Bake in preheated 400° F oven for 15-20 minutes.
  10. Let cool and enjoy!
Makes 24 medium sized muffins.

To eat these muffins, I take 1 Lactaid Ultra and 7 Prelief.  If you have IBS, make sure to drink Choice Organic Mint Tea with it and limit yourself to one muffin a day.