Guest Post: Interstitial Cystitis and Food Allergy

Since I have so many friends that have dietary issues for themselves or for their children, I thought I’d have a few of them share their stories.  My guest post today is by my sister, Dorothy Inman.  Dorothy is a gifted artist and writer, as well as a new mom to Alexandria.  Today she shares her story about living with Interstitial Cystitis.

Dorothy and Baby A

My name is Dorothy Inman.  My life was changed drastically almost five years ago when I was diagnosed with a chronic medical condition called interstitial cystitis (also called IC and PBS or Painful Bladder Syndrome).  IC is a medical condition of the bladder.  Simply explained the bladder lining has hemorrhages in it and bleeds.  Things such as acidic foods, traveling, jumping and running can irritate the bladder and cause a flare up.   It is predominantly diagnosed in women and does not have a cure.

The simplest way to explain how it feels is to compare it to a bladder infection.  I am in pain 24 hours a day, 7 days a week.  When I get a flare up I feel like I have a really bad bladder infection (the most painful type).  I always test positive at the doctor’s office for a UTI because my urine always has blood in it, but when it is sent off to a lab the results are negative.  I have constant pressure and burning on my bladder.   There are many women with the disease who cannot hold a job and are debilitated by the pain.   Personally I have been fortunate to control my IC with medication, bladder retraining, limiting my travel and diet.

Diet plays a huge part with interstitial cystitis.  Remember that I said my bladder lining has hemorrhages in it and bleeds?  When someone with IC eats acidic food or drink it irritates the bladder.  It is like pouring lemon juice into an open wound.  Urologists encourage people with IC to go on a low acid diet.  The main foods that most people love are the major contributors to IC pain.   Some of the foods that I love but can no longer have as a result of my IC are:  chocolate, caffeine, tomatoes, vanilla yogurt, and strawberries.  The first time I went to the grocery store after I was diagnosed, I was almost in tears.  Not only was I in pain, but I also had to limit what foods I eat.  After being diagnosed with IC for almost five years I am a pro at grocery shopping.  I stay to the outer edge of the grocery store in the produce, meat and dairy section (which I believe is common with most people who have food allergies).  There are a few items I pick up in the middle aisles of the store, but not many.

When I explain my medical condition and my eating restrictions to people they tell me they couldn’t do it.  It is only because of my extremely strict regimen that I am able to live a normal life.  I would rather go without than to be in more pain than I already am.

To throw another challenge into the mix, I recently gave birth to a beautiful baby girl who will be four months old this month.  I breastfeed her and discovered, with the help of a lactation consultant, that cow’s milk bothers her.  On top of all of the other foods I cannot eat, cow’s milk is added to the list.  I have used unsweetened coconut milk in my recipes (my preference due to flavor) and love to eat vanilla almond ice cream.

Preparing dinner that is IC friendly is very challenging, but with the help of my wonderful husband (who knows better than I do sometimes what I can eat) and some recipe tweaking I have been able to create some pretty delectable meals.  Since my husband is not that much of a fan of my IC foods, I have to make two separate meals a lot.  I’m sure a lot of you can relate.

Dorothy has been gracious enough to share one of her yummy recipes with us!  You can check out her recipe for “The Carrot Queen’s (Not) Muffin (Top)” HERE!

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9 Responses to Guest Post: Interstitial Cystitis and Food Allergy

  1. Pingback: The Carrot Queen’s (Not) Muffin (Top) | Allergic To Air

  2. Sara Dean says:

    Thanks for sharing your story Dorothy! My aunt has IC and in on disability as a result. It is amazing to see how many people (including one of her grown daughters) don’t believe her condition is real. She is in horrendous pain and has a significantly impaired quality of life because of this condition. We have learned there is a hereditary component, and we suspect my grandma had it and was just never diagnosed. Thank you for sharing your story and spreading awareness. Wishing you all the best and lots of vanilla almond ice cream :) !

  3. Dorothy says:

    Sara, yes a lot of women go undiagnosed because there is only one real way to diagnose IC and that is through a hydro distention where they blow your bladder up really big and take pictures of it. It did not start getting diagnosed until the 1980s and unfortunately some doctors still tell women today that it is all in their head. I am not sure how far the research is developed on the heredity of IC, but I also have a cousin that has the condition as well. It will definitely impact what I let my daughter eat or drink just in case it is genetic. Thanks for your comments. I will enjoy my Almond Dream, but can’t wait until I get to enjoy a nice big bowl of vanilla ice cream!! :)

  4. Pingback: Dairy Free Macaroni and Cheeze | Allergic To Air

  5. i also have ic i was dignosed in 2004 at 26 years old its a very painful thing to have you have no normal live with it cause the pain and mine is so bad i have surgery every three months im just always in pain sometimes it get really old but anyway thanks for lettin me share my story

  6. BLDL says:

    Thank you for sharing your story. I have been dealing with some very similar symptoms as those of UTI but have not been diagnoise or you can say I’ve been misdiagnoise. I have been reading stories and one really hit home the person says she was getting up every 30-40 minutes during the night to go to the bathroom to pee. I thought I was the only one dealing with this I get no sleep I’ve had several surgeries and I’m still waking up @ night. Hopin you continue to keep your condition under control and wish you and yourfamily the best.

  7. Dorothy says:

    Thank you so much. If you would like to talk more about IC feel free to send me an e-mail. I hope you are able to find an answer to the pain you are in.

  8. Dodie says:

    I am curious to discover if your limitation of cow’s milk helps with the ic. I also have diagnosed interstitial cystitis and have recently discovered an inability to digest cow’s milk. I wonder if that has had an effect upon the bladder.

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