Kat's Make-shift Pizza!!!

Pizza!?  Really!?!?  That's what I expect is going on inside your head right now, but it's true!  One of the things I was most depressed about when I was diagnosed and learning more about the IC diet was that it sounded like I would never have pizza again.  So, that was one of the first things I tried to make-shift, and with the creative mind of my wonderful mother, Kat's Make-shift Pizza was born!  This will not taste like regular pizza, but it looks so much like it and no one can argue with you, it is pizza.  This is one of my favourite foods to bring along to a friend's dinner party because it looks like regular food and you can fit in easily without being bothered with the ever frustrating and upsetting conversations about what people with IC 'can and can't eat'.  I am happy to have those conversations and feel it's important to spread awareness and understanding about IC but when I'm there to have a good time with my friends, it's just not the appropriate time and place for that type of serious (and sometimes depressing) conversation.  Please follow the elimination diet to check that all of the ingredients used in this recipe are safe before you try it.  I don't want to cause any flares to my dear fellow ICers!  That goes against the purpose of this blog!  So, let's get started.  First thing is the sauce:

Kat's Make-shift Pizza Sauce:

Ingredients:

Organic red peppers
Grapeseed oil
Cow's Milk Feta --- make sure that the ingredients of the feta are okay - for one, make sure there is no citric acid in it because there is in some!
Homemade Broth
Sea Salt

Directions:

1) Preheat the oven to 400ºF.
2) Cut all of the red peppers you would like to use in half and remove the seeds.
3) Use a small amount of grapeseed oil to grease the cookie sheet or pan you plan to use.
4) Place all of the red pepper halves on the cookie sheet face up.
5) Mix together grapeseed oil and sea salt and brush the oil and sea salt mixture on all of the red pepper halves.
6) Stick them in the oven and let them roast for approximately 45 minutes.
7) When they are cooked and you can stick a fork through them with ease, remove them from the oven.  Then you have two options:
Option A:  Make the pizza sauce with the red pepper skin on.
Option B:  Peel the red peppers for the sauce:  If you choose this option, cover the peppers as soon as they are out of the oven and let them sit for 10-15 min.  Then peel them with a paring knife.
8) Place several of the red peppers into a blender (depending on how much you want to make, you might be able to fit all of them in the blender, or may have to make several separate batches).
9) Add some IC-safe broth (see previous post for recipe) so that the red peppers will puree nicely.
10) Puree the red peppers and broth together.
11) Add some feta and puree the red peppers, broth, and feta together.
12) Then, it becomes a juggling act between putting more broth and feta in, so you'll have to do several taste tests as you go along, until you find an appropriate consistency and a flavour you like.  Generally if it's not salty enough, I add more feta.  I don't add more sea salt as the feta/red pepper ratio is very important to how it tastes.  Don't forget to take your Prelief and/or lactaid for the taste testing.

Et voila!  You have just made Kat's Make-shift Pizza Sauce!  I make tons of this at a time and separate it into small containers to freeze.  It freezes perfectly and I usually only have to make a big batch of it every few months.  Tomatoes are so last year, didn't you hear?  Red peppers + IC = a pain-free option for you and me!

Kat's Make-shift Pizza:

Ingredients:

Kat's Make-shift Pizza Sauce (see above)
Problem-ingredient-free Pita Bread
Problem-ingredient-free Mozzarella Cheese
Organic Mushrooms (optional)

Directions:

1) Preheat the oven to 400ºF.
2) Take your safe-ingredient pita and put it on a pizza pan (Stay away from big brand names such as Dempsters because they always have ingredients in them we can't have --- a basic ingredient list to search for is one listing flour (unbleached, whole wheat, etc.), water, sometimes sugar, salt and yeast).  I find that if it is the last ingredient and there aren't any other problem ingredients in it, that I can tolerate (with Prelief of course!) calcium propionate in my pitas.
3) Take a spoon and spread some of Kat's Make-shift Pizza Sauce on the pita (everyone will have a preference about how much sauce they like on it, but I personally enjoy enough so you can't see any white parts of the pita under it).
4) Cover the sauce with mozzarella cheese (personally, my favourite is Black Diamond Sargento Pizza Mozzerella) but be careful to check the ingredients of the cheese because they will often have something in there that doesn't need to be in there such as soy, citric acid or other unnecessary additives and/or preservatives, or they may even slip in other types of cheese that we can't have so look for purely mozzarella.
5) Cut up some organic mushrooms and put as many as you'd like on the pizza.
6) Put it in the oven and cook for approximately 10 minutes, but check it a few times along the way as every oven is different and everyone will have a preference to how cooked they like their pizza.
7) Take it out of the oven, cut in slices, take your Prelief and/or lactaid and enjoy!

This is one of my favourite make-shift meals and I hope you like it too.  Please let me know if your elimination diet allows you to eat it and if it doesn't, please let me know what ingredients you can eat and I'll try to come up with an Ultra-Make-Shifted version for you.  Also, please let me know how you like it!  Thank you and I hope this recipe helps you enjoy something you thought you'd never be able to eat again and something you can eat that looks very normal to outsiders.  Bon Appetit!

Homemade Broth: The First Ingredient of Cooking for IC

Since most flavourings, spices, broths, and herbs aren't okay for ICers, homemade broth is key in cooking with IC.  The best thing to do is make a bunch at once and then freeze it in several small containers.  It can be refrozen if you don't use all of the broth in the container.  Only use vegetables that you have tested through the elimination diet that you know are okay.  This is what I use:

Organic Frozen Corn OR Organic Corn on the Cob

Organic Asparagus Ends (Fresh or Frozen) AND/OR Organic Frozen Peas

Dried Mixed Mushrooms (Shiitake, Portobello, Oyster, etc.) --- NO Morals (they caused me to flare)

Sea Salt to Taste

Filtered Water

Directions:

1) Put all ingredients into a large pot and cover them with filtered water so that there are approximately three inches of water above the ingredients.

2) Bring the water to boil and then turn it down to simmer with the lid on for approximately 3-4 hrs (until the vegetables change colour or the broth tastes great).  Add sea salt to taste as it cooks.

3) When it's ready, separate the vegetables from the broth using a sieve or vegetable drainer.
4) Use the portion you need and then after letting it cool, separate the remaining broth into small containers and freeze.

* Note:  If you are not going to freeze any of it, do not leave it in the fridge unused for more than 2 days.

This broth is a key ingredient to many of my make-shift meals such as soups, stir fry, pizza, and mushroom sauce and they wouldn't taste nearly as good without it.  I hope you all find this recipe helpful and find similar safe organic vegetables to make your own.  Stay tuned for more recipes for ICers!

The Elimination Diet

This is by far the most important thing you need to do to sort out your diet.  I was given this advice by my Uncle Dann, a respected urologist.  Although I had tested a lot of foods before I did this and followed the advice by the IC sites about diet, I really had no idea how many of the foods that I thought were okay were causing me an incredible amount of pain.  Diet is crucial to bringing down your pain level and you cannot leave this part out of your pain plan.  I know women who have done that and complain about still being in tons of pain.  You have to take responsibility for this part of your life if you want to reach/maintain functionality.  It's upsetting, I know.  I have not had one bite of chocolate in over three years and it's not fun, but once you do the elimination diet and then try something that flares you, you'll never want to eat it again, trust me!

The elimination diet requires you to calm down your bladder through eating an extremely bland mono-diet for 7-12 days.  This bland diet contains plain oatmeal (with NO additives; only one ingredient).  You can use a bit of sea salt when cooking it, and please cook it with filtered water, but that's it.  This start to the diet is extremely frustrating and I remember crying a couple of times during it but it made my pain level go way down and calmed my bladder so I could start testing foods and see if they were painful or not.  Introduce one food at a time and eat it for 2-3 days.  Only introduce single ingredients, e.g. organic red peppers, not casserole.  If it does not increase your pain level, you can consider it okay and move on to the next food.  Make sure to keep a list of which foods are okay and which ones aren't.  When you come upon a food that is not okay and it puts you in a flare, do not test anymore foods until the flare is gone.  This is a very time-consuming process but it is the best way to figure out what you can eat.

When you find a food that instantly flares you, mix a maximum 1/2 tsp of baking soda with water and drink it.  I usually take about 1/8 tsp of baking soda and that's enough.  This neutralizes the bladder and helps the pain, especially if the reaction is due to acidic content.  I should warn you, this is disgusting.  Don't start with a full 1/2 tsp because you will probably throw up immediately.  Never take more than that in 24 hrs.

One thing that my uncle didn't tell me but that I will tell you, is to go about your days armed with Prelief®, especially during testing times.  Prelief® is an acid reducer that ICers swear by and I could not eat most of the foods I eat without it.  It says to take two but I have found that I have to adjust the number to the food I'm eating.  For example, for organic blueberries, I take five.  For an organic pear, I take three.  You can usually feel if you need more.  However, if you have taken over six or seven and it still hurts, I'd say you can go ahead and file that food under the foods you can't eat.

Where to start?  Check out the IC websites I have listed under the helpful sites on the side to get an idea of which foods are most likely to be okay, and start with them.

It will be different for everyone, but the first foods that I could eat were lactose-free skim milk, organic corn, organic blueberries, and make-shift cornbread (without egg yolks).

The elimination diet is a big thing to take on but it was the best thing I did.  Without it, although I eliminated the most instant flaring agents such as lemon juice and coffee, I was still keeping myself at a very stable high pain level.  The elimination diet was the only thing that made me realize what I could really eat without pain and I am so grateful to my Uncle Dann and to the process for that.

Please post any comments or questions, and even vent about how frustrating this process is if you'd like, I understand and am happy to listen and offer support.  Good luck!!!

My Worst Flaring Agents

This is a list of the worst flaring agents I have encountered so far.  This list is by no means exhaustive or in any particular order and some things are clearly individual, but it has always been helpful for me to know what flares other ICers.  Unless noted, the flaring agents are for both organic and non-organic.  I will be updating this list every so often when I encounter or think of more.  Here we go:

Food and Drinks:

1. Lemon juice
2. Carrots 
3. Anything soy (Tofu, miso, soy oil, soy milk, soy flour, soy lecithin, etc.)
4. Pepper
5. Too much table salt (Table salt is very acidic; use sea salt instead)
6. Mayo
7. All dressings (Salad dressings, marinade, condiments, dips, anything)
8. Tomatoes and all tomato products
9. Citric acid (This is found in all citrus fruits such as oranges, grapefruits, etc., and is found in juices, candy, fruit-flavoured gums, jams, canned foods, some teas, cereals, and is found as an additive in most foods)
10. Coffee
11. Yoghurt
12. Sour cream
13. Broccoli 
14. Cabbage
15. All nuts (Yes, even almonds)
16. Grapes
17. Apples
18. Cantaloupe 
19. All alcohol
20. All berries except organic blueberries
21. Non-organic honeydew melon
22. Non-organic peppers 
23. Non-organic cucumbers
24. Non-organic blueberries
25. Non-organic red potatoes
26. Non-organic celery
27. Non-organic lettuce
28. Non-organic alfalfa sprouts
29. Non-organic pears
30. Non-organic peas
31. Non-organic cereals
32. All preservatives (Except calcium propionate --- I can tolerate a small amount of this one with Prelief, only if it is the last ingredient listed, such as in some fresh pita breads)
33. All additives 
34. Artificial sweeteners
35. Artificial flavours
36. All fruit except organic blueberries, organic honeydew melon, organic pears, and dried or frozen organic mango (All with Prelief, of course)
37. All fish except tuna
38. Balsamic vinegar 
39. Any acid natural additives - citric acid, nitric acid, etc.
40. All herbs (especially rosemary!) except fresh organic dill
41. Unfiltered water
42. Regular milk (Try lactose-free)
43. Aged cheeses
44. Cottage cheese --- Yes this is a young cheese, but don't be fooled!  It has citric acid in it!!!
45. All teas
46. Maple syrup
47. Meat
48. Garlic
49. Onions
50. Egg yolks --- But I can eat egg whites
51. Chocolate (Even organic white chocolate) 
52. Cream --- Ice cream etc., but don't despair!  I can eat vanilla frozen yoghurt if it doesn't have any troublesome ingredients or additives or preservatives 
53. Quinoa (This one makes absolutely no sense to me but it flares me instantly)
54. Beets
55. Wild blueberries
56. Anything carbonated 
57. Pop/soda
58. All caffeine (Even from green tea)
59. Anything smoked (Even smoked tuna)
60. All processed foods
61. All pre-packaged foods
62. Most cereals
63. Most food colouring, especially the different variations of red
64. All jam
65. Regular sugar --- Try demerara sugar instead (cane sugar)
66. All candy

Other:

1. Cold medicine (Advil Cold & Sinus, etc.)
2. Pantyhose --- Try thigh-high stay-ups
3. Pants that hit you in the wrong place --- Guess jeans hit me in the right place, thank goodness
4. Running
5. Bending over --- Try squatting
6. Any exercise using your abdominals/pelvic muscles
7. Sitting in a chair without my seat cushion (Even still, most chairs are not okay with me and lead me to faint from pain)
8. Taking the bus/train
9. Lifting/carrying heavy objects
10. Carrying a backpack 
11. Pilates
12. Most supplements, especially multivitamins and/or potassium, ouch!
13. Tight underwear/tight pants
14. Spandex
15. Sleeping without a pillow between the knees
16. Sitting on a bike (Exercise bike, motorcycle, regular bike, etc.)
17. Sitting forward
18. Any activity that includes moving your arms a lot, especially at your side such as tennis, badminton, etc.
19. Ballet
20. Pushing when you urinate --- even if you have to sit there for five minutes before you can start, DON'T PUSH!
21. Not drinking enough water --- I drink 8-20 litres a day
22. Holding urine --- this is one of the worst things you could do if you have IC --- even if you're in a bad situation such as on the highway, figure it out.  Either pull off and find a bathroom or buy some portable, disposable, female urinals to take with you when you know there's not going to be a bathroom closeby. 
23. Sucking in --- You will pay for doing this with a huge swollen belly that can't be sucked in.  Wear clothes that make you feel confident enough that you don't feel the need to suck in because I'm telling you, the swelling can make you look about 8 months pregnant and sorry, you can't suck in that type of swelling.
24. Swimming in a pool --- It is not the act itself, but rather the chlorine in the pool, even in salt water pools because they still have to use some chlorine.  If you live near a lake or the ocean, take advantage of it because swimming is one of the only forms of exercise we can tolerate.

Medications I have found to be helpful for the pain and symptoms caused by IC

I am currently on 30 medications due to my various problems but I am just going to post the medications that are specifically helpful to IC and the pain caused by it.  I hope this is helpful.  Please consult with a doctor before trying any of these medications, even if they are over the counter:

1) Elmiron 100 mg 3 x per day - This is one of the main lines of treatment used for IC.  It comes with many horrible side effects, but I promise most of them die down in about 6-10 months.  However, I will be straight with all of you about the reality of these medications.  I lost about half of the hair on my head in the first 3 months, coming out in clumps and handfuls.  I also felt like I had the flu for about 6-8 months 24/7 along with some other persistent unpleasant symptoms.  Yes, these symptoms were horrible but the benefits are worth it.  It takes several months to see your IC symptoms improve, but they gradually do, especially in terms of urgency and frequency, and even if they don't, keep taking it because it improves the health of your inner bladder which can be seen by your surgeon physically through a bladder scope.  We need this medication and I know some women who have had wonderful success from it alone.  None of the realities of IC are pretty but you will benefit from this medication in the long run and to me, it is absolutely worth it.  It is a real option that we have and I can't stress that enough.  Since it is difficult to absorb, you must take it at least 2 hrs after you have eaten and at least 1 hour before you eat.
2) Amitriptyline 110 mg per night - This medication reduced my bladder and pelvic pain, especially neuropathic pain, an incredible amount.  It soothes the overall pain --- especially burning and stinging pain --- in my inner bladder, helps my pain from damaged nerves, fibromyalgia, etc., reduced my urgency and frequency profoundly, and it is the only reason I can sleep at night.  I started off on 10 mg per night but thankfully I have a wonderful doctor who worked with me closely to find the optimal amount.  Since I have other nerve problems and fibromyalgia, other IC patients may be okay with a much lower dose.  Also, since it was originally used as an anti-depressant/anti-anxiety medication until they found out how amazing it was for nerve pain, it does have an element to it that helps you deal with the emotional rollercoaster of living with IC.
3) Internal Diazepam 5 mg 1-2 x per day - This is a treatment that was originally tested by a doctor in the United States who had incredible success with one of his IC patients.  I did not find the same success but it did help me a lot when I first went on it.  Now I no longer use it everyday, just when I'm having a really bad pain day or I'm in a flare.  The best way to make it into a paste that will stay inside the vagina long enough to work is to crush it up very finely, use one small drop of water and lidocaine 2% gel.  This is not a medication to take orally - only take it by inserting it into the vagina.  Many women with IC acquire vaginismus and that is also helped by this medication.
4) Stool Softeners - Docusate Sodium Capsules USP 200 mg per day - With the IC diet, we do not get enough fibre and our medications usually cause constipation.  Constipation causes much more pelvic pain so it is good to take stool softeners to help counter that.
5) Cetirizine 20 mg per day - This is an antihistamine and has been very soothing to my inner bladder, so much that I am now on a prescribed amount everyday.  I have tried other antihistamines but none of them compare to this one.  It is available over the counter as well as by prescription.
6) Uracyst 20 mg 1-4 x per month - This is a medication that is instilled through a catheter into the bladder; a bladder instillation.  This acts as a temporary replacement GAG layer (inner bladder lining) and is incredibly soothing and helpful and has enabled me to expand my diet 20 x more than I could have without it.  It also improves frequency, urgency, pain, stiffness, incontinence, ability to urinate, emptying the bladder and bladder spasms.  It is basically a gift from Heaven.  I know that is it not available in the US yet, but it is under review so I hope it becomes available very soon.  At first you get the instillations once a week for 6 weeks and then spread them out more and more.  I have a particularly bad case of IC so when I'm great I still get them about once a month.  During flares I get them more often and they greatly speed up the healing process.
6.5) My surgeon now mixes my Uracyst instillations with Lidocaine 1% and it completely numbs the area which is amazing - a really nice break from the pain and it helps to break the pain cycle to bring your overall pain level down, not just in the short term.
7) Pain Cream - Ketoprofen 7.5% + Amitriptyline 5% + Lidocaine 5% 1-3 x per day on painful area (mostly pelvis) - This pain cream is amazing.  It was given to me by the pain clinic and I have recommended it to several people with all different kinds of pain.  I have found this cream to be much more effective than narcotics and other pain killers.  There is a specific pharmacy in London, Ontario 'Commissioners Pharmacy' that compounds it all of the time so the price is the best you'll find and it actually absorbs properly.  Having it compounded at another pharmacy will be more expensive and it may not work as well, but if that's the only option you have, I would still give it a try.  It is about $120 for 100 g at Commissioners Pharmacy.
8) Lidocaine 1% injections 1-14 injections per day - This medication is local anesthetic and is the one that improved my functionality more than any other, especially in terms of sitting in a chair, but it is a very skilled and risky procedure.  I was trained for over a year by my surgeon to give myself my own lidocaine trigger point injections.  Not only do these injections numb the most painful areas, they also help to break up the muscle knots in the pelvis.  At first I had these trigger point injections done by a surgeon and there are very few that do them so you may have to search.  Trigger point release in physical therapy is another avenue that works but it is a much more painful and lengthly process that really inflames the area.  There is a big danger of hitting a blood vessel, etc., or doing too many and causing heart failure with these injections so PLEASE, even if you can buy the necessary items over the counter, DO NOT try this yourself and remember it took me over a year of begging, learning and training before I was allowed to do these myself.
9) Dimenhydrinate Injections 50 mg 1 ml as needed - I was originally given these injections to stop the vomiting/fainting cycle I get into from pain but remarkably they help my IC pain as well - my doctor from the pain clinic found this very interesting but it is another antihistamine and antihistamines have been very successful with reducing IC pain so she gave me the go ahead to use them more often, even everyday.  These are very easy IM injections to give yourself and I'm sure your doctor or nurse would be glad to show you how to do them properly.  There is a risk of addiction so please be careful and talk to your doctor about what would work for you in terms of dose amount and frequency.
10) Ibuprofen 600 mg as needed - I'll be straight with you once again, the Elmiron causes horrible headaches, and that is one side effect that never went away.  I need 600 mg of ibuprofen to help usually at least once a day but the thing that helped most for the Elmiron headaches was actually Amitriptyline.  However, even with this help, I still need to use ibuprofen.
11) Lidocaine 2% gel as needed - This is over the counter and is a wonderful topical anesthetic.  I use it to numb my urethra before instillations and also when I get irritated from toilet paper, etc., and sometimes inter-vaginally to help with pain from vaginismus.
12) Statex 10-30 mg as needed - I only take short-acting morphine when it is absolutely needed and not even close to once a day.  This is usually only used during flares and never back-to-back (e.g. every 4 hrs).  Stay away from narcotics as much as you can because people with IC & Fibromyalgia usually become physically addicted/used to a dose and need more very quickly.  I have tried several narcotics and long-acting 12 hr and 24 hr narcotics and have found them to be evil and wretched things.  There is no shame in using them when you absolutely need them, or no shame at using them at all really, especially if they work for you, but I have found that using them few and far between is the best way because then you are not dependent on them so when you do need them they actually help.
13) Senkot-S as needed - This is a laxative/stool softener combo and I always take one on any day that I use morphine or if I am constipated.  It helps and has not hurt my inner bladder at all.

So that is what I am currently taking for IC specifically.  Please post any questions or comments you have for me and if you decide to try any of these, please let me know how it goes.  Working closely with a doctor you trust is so essential to success with treatment because everyone is different and finding the best medications and dose for you is extremely important to getting help for the myriad of symptoms that come with IC.  I wish you all luck and hope that this information was helpful.  I have tried most medications so even if you have a question about a medication that is not on this list, please feel free to ask.  Thank you and take care.  :)