Tuesday, May 19, 2009

Find a combo that works

One harsh reality for managing IC that everyone needs to come to terms with is that there is no one treatment that will solve all of your problems.  Thus, it is essential to find a combination of treatments that works for you.  It is very individual, and a great deal of it is up to you, not your doctors, to figure out.  Make the commitment to figure it out --- it may be frustrating and seem near impossible, but please, don't give up.  There are many women out there that have IC and manage their symptoms so that they are still reasonably functional.  In the past few months, I have tried several things, and although I'm nowhere near completely functional, I have found some great things that are cutting the pain and symptoms down significantly:

1) Diet --- this is the most complicated thing and is also very personal and will take a lot of trial and error.  I will write much more about this later, but at present, I can tell you the worst things to avoid:  caffeine, citric acid, pop/soda, juice, additives, alcohol, soy, nuts, chocolate, really anything processed, deli meats, pre-packaged dinners or other foods, aged cheeses, sour cream, tomatoes, mayonnaise (& miracle whip), egg yolks, spicy foods, artificial flavours and sweeteners, yoghurt, high-potassium foods such as potatoes and bananas, high-oxalate foods such as beets, spinach, rhubarb, sesame seeds and tahini, potatoes, stevia, most beans, nuts, celery, etc., and cold & allergy medication.  A good food list to start out with can be found at http://www.ichelp.org/Default.aspx?tabid=515.  However, I will also post a comprehensive list of my own soon.  *Tip* The only drinks I am okay with are filtered water, lactose-free milk and chamomile tea (made with filtered water).  
2) Taking Prelief with select foods (If you live in Canada, you can order this from wholesalesupplementstore.com instead of driving over the border to buy it)
3) Elmiron (100 mg 3x daily --- yes, you will experience some horrible side effects at first, but please don't accept defeat too early --- almost all of my side effects are gone now and the hair that I lost is already growing back --- just try to ride it out and take gravol/dramamine when you need to)
4) Uracyst bladder instillations (see under 'helpful links')
5) Physical therapy
6) Clothing choices --- wearing clothing that isn't tight around the abdomen/pelvis (e.g. don't wear tight jeans that hit you in the wrong spot or wear pantyhose) & wearing comfortable shoes
7) Amitryptaline or 'Elavil' (this is the only pain killer that has helped my pain from IC and it also helps you sleep through the night --- not even narcotics cut the pain down as much as this has for me -- right now I'm on 60 mg/night but I'm allowed to go up to 80 if I need to)
8) Baking soda --- if I eat anything that really bothers me (especially when I'm testing new foods) I take half a teaspoon of baking soda with water --- this can intercept a flare... disgusting but it works
9) Exercise --- don't get too excited... at present all I can do is walking and stretching, but those two activities seem to help my overall body pain and emotional state.
10) Heat --- Frequently using a heating pad (everyday) and taking hot baths with epsom salts or "aches away" bubble bath (2-7 x/week)
11) Using a seat cushion by Obusforme everywhere I go --- it is meant to take the pressure off your lower back, but it also significantly relieves the pressure on the lower abdomen/pelvic region.  I wouldn't have been able to stay in school/sit in any chair without it.


  1. Could you provide pic of seat cushion as there are three different types. Not sure which you recommend. Also, does vegan mayo cause flares?

    1. I apologize, I didn't realize that the link wasn't still active - https://www.obusforme.com/sit/the-obusforme-seat-black.html that is the seat I'm recommending. As for vegan mayo, just looking at a couple of recipes briefly, absolutely it would cause flares since it has lemon and soy. Let me know if you have any other questions! :)


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