Summer Experiment

  I had my first major flare in August, 2012 after some very stressful events, hormonal changes, and poor eating. Since that time I've had monthly flares that very much coincide with my menstrual cycle. I'm one of the ICers that has issues with estrogen and feels better during times of balanced (luteal phase, the 2 weeks before your period) or low balanced (the first three days of my period). I'm using both allopathic (conventional medicine) and homeopathic ways to treat my IC. All of my health practitioners are aware of who I am working with and what I am using to treat my IC.

Since October, I've started to see some improvement that have resulted in me having more good days than bad. What has been effective for me has been acupuncture, dietary changes, meditation, aloe vera pills, atarax, and herbs to balance out my hormones. I'm also taking elavil, uribel, cystoprotek, d mannose, magnesium citrate, and have gone gluten and dairy free. I honestly don't know if anything in the second set has helped any but I continue to take them.

I wanted to use the summer to experiment on myself. I'm not looking to take myself off medication or implement any large and/or intense diet changes or cleanse. I just want to see if small changes make a noticeable difference if I do them consistently. I'd like to use this thread to track my progress.

As of this starting point, I am a 41 year old woman with red hair who is the walking definition of inflamed. I had bladder issues since I was a child and underwent two urethral dilations (first one at age 4) which set the stage for post procedure ptsd and extreme health anxiety issues. I had no issues after the age of 14 (when I got my period) until I was in my mid 30's when I my hormones started to change (very mild IC that was only triggered by food). I went into remission after having my son at age 37 and didn't flare again until I turned 40. My symptoms on a regular basis are burning and urgency. I don't have frequency issues unless I'm in full flare.

This summer, I will be switching over to a diet that includes more animal protein. I will also continue to meditate daily but will be adding in gentle yoga. I'd also like do gentle daily detoxes like skin brushing. Lastly, I'll be syncing up my daily activities and diet with a new program that has women balancing their lives along with their cycle. 


7/5 Update-

I've been doing a lot of work as of late with meditation which has been a game changer for me. I believe that with the herbal balancing, body work, and some dietary changes, I've been feeling a lot better. Still on meds but I'm going to talk to my Dr this week. I'm fine with being on them for a bit longer, I'm just curious to see what her thoughts are.

I've been looking into a low histamine diet lately. I have a lot of symptoms of systemic inflammation that correspond to high histamine levels. That plus the one med that I do know had a positive effect on me was Atarax. I've been reading the Low Histamine Chef and her diet is doable. She had IC-like symptoms (nocturia, painful urination) but since she had other equally harsh symptoms elsewhere in her body, she didn't treat her condition as just IC. She has an ebook that talks about different mast cell conditions and narcolepsy (which I had from 14 until this major flare in Aug) is one of them as well as IC, obviously. I do think that there are more and more studies pointing to the over stimulation of the nervous system contributing to conditions like IC. 

Anyway, I think all of these things- hormone balance, alkaline diets, meditation contribute to a calmer nervous system. The role of histamine and hormones is pretty crazy and definitely worth a look.

Now, on to milestones. I did have a mini flare last month which bummed me out but my herbalist was happy that the pattern was shifting. I'm trusting her on this one.

1. I'm wearing jeans on a regular basis, even some stretchy close fitting ones which are actually really comfortable.
2. My husband and I hung out with friends until 9:30 one evening without me getting flarey or freaking out that my evening schedule was off.
3. I scheduled a trip for us (including our son) to DC in August. 
4. I'm starting my own business! I'm going very slowly. I used to be crazy type A professional for years, so this one is hard.

Working With Doctors

I work with a naturo-path, and a slew of natural-med doctors. But I also work with traditional doctors.

Regardless of what kind of doctor I'm working with, I have found that I need to feel empowered in the patient-doctor relationship. Their medical degree is important and valued, but it is also intimidating. I have experienced and lived the IC life, and I have researched and discussed MY IC with many people. My experience should also be seen as important and valued. With that in mind, here's some tips I can offer:

1) For a while there, my doctors and I thought I may have endometriosis, so had an exploratory laparoscopic surgery to see if I did have it. The plan was to clean out old scar tissue that probably developed when I underwent an emergency appendectomy for a burst appendix (later we completely ruled out endometriosis, and we decided that this was not a problem as far as my IC went. But I digress.) Selecting my surgeon (or any doctor for that matter) is a crucial part of my IC healing:
a) First, have patience. I called around, I researched doctors, I cross-checked my 'favorites' with my insurance company to see if they were covered, then once I found 1-2 that fit the 'bill' (ha ha. no pun intended), I began contacting people online who were treated by my surgeon. I tried filtering through the 'bad' reviews to see if they held merit. I even 'met' a lady online from some forum I had to sign up for. She had mentioned his name briefly in a surgery she had, so picked her brain about her experience with him. It was really helpful
b) Then I made my appointments. I saw my potential surgeon 3 times to 'interview' him about my concerns, critera, and questions I'd developed.
c) What do I say to him (and all my doctors) when I first meet them? I tell doctors my IC issues and experiences (read all my previous posts for details on what I mean). I'm respectful but upfront about my 'conditions' for being treated. I tell them that I don't want to just be prescribed meds. I'm open to trying some, but I don't necessarily want to just 'take meds' as a way of 'guessing' to see 'if it will help' (sound familiar anyone?). I want LABS DONE! I want to find out if I have Candida! Hypoluxaria! Leaky Gut! Anything else!? I want to look into something before I blindly take drugs. 
d) When we meet for a follow-up, I bring my pink IC note-journal, and I look through it to go over discussion topics. I like to hear the dr's take on research I've found, anecdotes (stories from other IC patients), and ideas I may have on treatment.
e) I ask if the doctor is willing to read a couple of articles that I think are pertinent to my IC, and then I hand him copies and tell him that I want to have a discussion about these articles at my next appointment. In particular, I bring them a copy of Dr. Fasano's research article (it's mumbo-jumbo to me because I don't speak the language of Medical, but they appreciate it). They usually don't know about this article. I want to have discussions on how we think this may affect my IC.

I had lovely doctors tell me that I know more about my IC than he did. I appreciate their candidness. They're probably right. I DO know more about MY IC than they do . These doctors wanted me to get better, and one in particular suggested that I see a local naturopath treatment center who has had amazing results in treating a myriad of things. Right now, I just don't have the money for this center. This was my response to my doctor in a followup visit. I told him:
"I called the naturopath center, and I can't afford their treatment right now. In the meantime, I have insurance, and I have YOU. Can we still work together on trying to figure out my IC?" He was willing to proceed with our discussions and brainstorming (and lab work). This has been an amazing support in my research about my body and my IC.

A good doctor can help YOU peel back the layers of your IC 'onion'.

How did I arrive at my Diet Decision?

Let's review. The following foods cause me bladder pain, so I'm:

• Grain Free (including gluten and corn)
• Dairy Free
• Egg Free
• Soy Free (soy is a type of bean)
• Potato free (potatoes are vegetables in the nigh shade family)
• Limiting my sugar (to kick my candida problem)

I've heard of the Paleo Diet, the vegan diet, the vegetarian diet, the gluten free diet, the Primal diet, the low-oxolate diet, the GAPS, the IC diet (of course!), the AIP diet, and more. 

How did I ever choose one that worked for me?
One reason I recommend picking a diet is because it helps me find easy go-to recipes. Thinking up foods on such a limited diet is exhausting at the very least.

Because my IC doesn't really seem to flare really badly to acidic foods, put the IC diet on the back burner...it became secondary on my food-priority list.

So as I experimented with bladder pains and food varieties, I went through various diets. For a while there, I was a vegan who ate low-oxolate vegetables, and who was doing a modified version of the GAPS diet. My IC was manageable, but eating was very complicated. 

The GAPS diet is THE BEST diet for sufferers of the leaky gut, so I tried that first. It does not allow, of course, grains.  A lot of people on the GAPS diet are also low-oxolate, and since I know that some people have a strong connection between low-oxolates and IC, I tried both these diets together. (Note: Join the yahoo group 'Trying Low Oxalates' for support if you're interested in trying it...LOADS of IC peeps are members of that group. We chat all the time about the discussion I'm trying to start here).

But this diet wasn't working out perfectly for me. I wasn't satisfied with my IC, so I ventured out again and began exploring other diets.

Today, I'm on the Auto Immune Protocol (AIP) Diet. 

The AIP diet is a version of the Paleo diet (again, it is a grain-free diet). Of all the diets that I've tried out, this one fits me best. Basically, when I compared my list of foods that I KNEW made my bladder flare, this diet came closest to my list. Basically, if I eat AIP, I am automatically avoiding foods that make me flare. This is how I arrived at my diet decision. 

There is one caveat to the AIP diet:

My single and only caveat of the AIP diet are foods that are high in potassium. On the AIP diet, you can eat bananas and asparagus in abundance, but for some reason, those 2 foods made me flare. When I was on the low-oxalate diet, I avoided these foods, and my bladder felt better. I THOUGHT that this meant that I was intolerant to oxalates, but CORRELATION IS NOT CAUSATION. I later learned that it wasn't the oxalates in these foods, but most likely the high-amounts of potassium.

Letting go of food...
On the IC-forum, I've had a discussion about the emotional repercussions involved with eliminating foods that I love. I thought I'd re-share that here as it seems very pertinent.

I'm going to open up here for a minute, because this is actually therapeutic for me...please indulge...
When my husband and I go out to a restaurant with friends, and everyone at the table orders, and I pull out my lunch box, I often have to explain to our friends that I've had to divorce pleasure and food [side note: I know they mean well, but the 15-minute-long conversation that then ensues from our friends about how that is 'so sad' really isn't helpful. I live it. I don't need to hear about it as well!] So yes, it is a serious bummer to have to change my diet...and by bummer I mean really really sad. Especially since I'm the girl that likes EVERYTHING. I was born in Brazil. I've lived in Africa. I lived in the Southwest of the US and then to DC. I've gone to Europe. I lived in Texas. I ATE EVERYTHING AND LOVED IT (except for pickled mangos. Kinda gross). But for someone like me who has a daring pallet, I was pretty ticked off all of the time about my dietary constraints. I was mad for a while...and that anger seeped into all other areas in my life.

But then one day I just snapped. I began to look at the other side of the matter: I have 3 young kids (the oldest is 5), and because of the diet I've figured out, I don't wake up in excruciating pain. I can be a mom. I can teach my college classes at night. I can have a life. I had (let's be honest, still HAVE) really really bad IC. My doctors would always say it was one of the 'worst cases' they've ever seen (grrrreat. Misery! Thy name is BLADDER!). And although my pain level today fluctuates from 0-30%, I'm glad. 30-100% was NOT working. The pain management I have now is huge when nothing else worked. I know that I am managing this pain due to my diet. I'm not on any drugs. I do herbal stuff and vitamins (i.e. Vitamin D, multivitamin, some herbal anti-histiamine, fish oils, but nothing really hard-core), but no drugs, so I know that a huge part of my pain management is my diet. If I deviate for even one bite, my IC comes back with a fierce vengeance and I'm in bed with a diaper-towel in between my legs for hours. So anyhow, after that day where I 'snapped', I was able to overcome my frustration about something I couldn't change and I just go with it. I don't like it, but I do like the level of relief the diet brings me. So I'm going to embrace this gift, my diet, for now.

So to answer some questions:
1)Do I plan on being on this diet forever? Yes and no. I kind of believe in the high-vegetable intake thing and in the grass-fed meats thing, and I really find power in eating whole foods, but part of the goal from getting better is to be ABLE to eat whatever I want, in moderation and on occasion. So while I'll probably be mostly a whole-foods girl with grass fed meats (after remission), I'd love to reintroduce a moderate amount of grains back in my life. I think my body was designed to eat all foods...so I'd like to have a more 'normal diet' some day. Maybe I'll refer to myself as a 'dirty Paleo' someday...one who mostly follows Paleo-ism, but who may deviate from time to time .

2) Yes. I do think my current Paleo-AIP diet is sustainable, but... While I don't feel starved, and while I do think I have enough nutrition, I don't think it's good to eat this limited FOREVER. I plan on doing this Paleo-AIP diet for at least one year...possibly longer, then I'll decide if my gut has healed enough to add something like nuts into my diet. I know. Woooweee...almons?! Such crazy talk. :)

3) I don't believe in prescribing any one diet. Someone told me once that they think everyone's body is constitutionally different, and I like that concept. Low-oxolates may be important for you and your IC, but it doesn't seem to be right for me. Meat may make you feel a little sick, but it antibiotic free, grass-fed meats make me feel great (the nasty hormone-coated antibiotic injected meat I ate before DID make me feel digestively icky however). I later learned that meat has some good amino-acids that help with gut healing. Anyhow, you need to be your own doctor and figure out diet you need. BUT, having said that, I do think that we, as a whole, eat FAR TOO MANY GRAINS. FAR TOO MUCH DAIRY. and FAR TOO MUCH MEAT! I think grain-free is one of the best things to do for me and my IC. It forces you to eat more veggies!

I hope you find this note encouraging. I'm not trying to be preachy at all to anyone. I just thought I'd express some of my journey about the food-thing. I can really really relate to many frustrations. It also felt good to put this out there since it's something that I've been mulling over for a while. I respect everyone who is trying to work this out in their own way! 

Here's to all of us and our health [raises a glass of Evian]! And honestly, I DO BELIEVE we can beat this. I know we can!
Paola