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 😘
