How I Healed My Interstitial Cystitis: Part 2 - Treatment

Following up on Part I of my IC story...After my interstitial cystitis diagnosis I found a doctor who not only believed that I had IC, but who was open to alternative treatments in addition to following conventional medical treatments.

For several years I used Elmiron. At the time that I used Elmiron I do not believe it was being marketed exclusively as a IC drug, although I believe it is now. As it was explained to me, the general idea of Elmiron was that it would coat the bladder wall, protecting the ulcers from being exacerbated by liquid in the bladder, and hopefully healing them in the meantime. Elmiron is a drug that requires some dedication. It must be taken 1 hour before meals and 2 hours after eating, 3 times a day. This is a rather difficult thing to ask a 20 year old college students. And let us not forget some of the most common side effects: sweating and hair loss. Great, so I can  be a bald, sweaty girl who has to pee all the time. That sounds like every girl (and man's) dream.

During this time, and I'm not sure if was because of the IC, although I'm positive that the two are linked, I had horrible IBS. So in addition to being bald and sweaty (ok, I'm exaggerating), I also had to run to the bathroom every time I ate something. This resulted in a rumor amongst my friends and in my dorm that I was also bulimic. Wunderbar.

Mostly I was miserable, the Elmiron didn't seem to be doing much and I was mostly subsiding off of salad, oatmeal and noodles with butter, since it seemed like everything else I ate either irritated my IC or my IBS. I ended up weighing around 100 lbs, not really the ideal weight for someone who is 5'4". On top of that I was so sensitive that I could not use any soaps, detergents or fabric softerners that had strong dyes or fragrance.

 Eventually I gave my bladder a long enough break from any acidic foods that I could start eating almost normal again. At first I followed the IC elimination diet. I was pretty strict: absolutely no caffeine, alcohol, coffee (even decaf), or artificial sweeteners. I cut way back on my fruit consumption, which was hard since I'm a vegetarian and love fruit, and I absolutely got rid of all fruit juices. I got tired of trying to deal with the Elmiron, which was expensive and difficult to manage. I started drinking aloe juice every day.

I had read quite a bit about aloe juice, and basically how it was explained to me is that just how aloe heals cuts and burns on your skin from the outside, consuming it would help heal your digestive tract. It was also a mild laxative, and helped to regulate my IBS. Most aloe juice tastes horrible, but I found a brand, George's Aloe Juice, which basically had no taste at all. I could drink it on its own if I wanted. Usually I'd mix in about 4 ounces of aloe juice into a water bottle or glass of kool-aid. Yes, I know, tons of sugar, but since I could drink juices any more it was pretty much the only thing aside from water and ginger ale that I was drinking. Seriously, if you're considering trying out aloe juice I highly suggest George's, you'll be doing yourself a big favor by not trying to choke down the other stuff.

George's is where it's at.

So, that's all I did. For about...3 years. A strict elimination diet combined with aloe juice, every day. I found that I would flare whenever I was sick and around my period. During my flares I would be extremely careful about what I ate, consuming only the most bland foods possible, and tons of water. I had every bathroom mapped out. I always drove myself to dinner in case I had to make a stop before or after. If I went on a road trip I didn't eat anything other than bread and I would maybe take a sip of water every couple hours. Overall,  I was paranoid.

Gradually I started to add foods back into my diet, I would eat fruit, I might have fruit juice now and then (watered down, though), I ate all sorts of vegetables, and had occasional soy as well (another food that is commonly problematic for ICers). Every now and then I would have a celebratory adult beverage, and while I could tolerate decaf coffee, it still made me feel kind of funny so I would generally opt for hot chocolate instead (hence the birth of my hot chocolate obsession).

Around year four I started to see a huge difference. I was no longer having flares. I started adding all foods back into my diet without having a reaction. I was still drinking the aloe juice at the time, but around the third or fourth year I stopped doing that as well. When I felt a flare, it generally ended up being an actual UTI (One theory is that IC results from a crazy auto immune response, I'm fairly certain my IC is a result of getting a UTI when I was 18, especially since my SED rate is borderline positive). Having a UTI sucks, but at least it's easily treatable!

jess' special tea

I have a number of antibiotic allergies and so there's really only one medication I can take for a UTI. I was concerned I was going to develop a resistance, so I tried really hard to eliminate my chances of getting one...but, I still probably got one once a year. Until a few years ago, when I discovered the best thing ever. Jean's Greens, in Castleton, NY. Jean's carries a large variety of herbs, herbal products, and herbal teas. I picked up Jean's P.P.T. Tea and mixed in 1 ounce of Buchu leaf, which I also got from Jean's. The P.P.T. is a tea that is designed to be soothing to the bladder and kidneys. Buchu leaf is an Arican herb that has been used to treat bladder and kidney issues for some time, this site has a little bit more info on the plant, including precautions. I would fill a tea ball with my tea and have a cup of it a day at first, and always a cup of it whenever I was traveling, since I was paranoid about getting sick while alone or abroad. Whenever I felt the tingling of a flare or a UTI I would have a cup or two for the next few days.

Since I found this tea, I have not had a UTI. I cannot recommend it more highly. There's really no reason not to try it, the tea, plus the buchu leaf costs less than $10 all together and lasts me for almost a year. Plus, you're not over exposing yourself to antibiotics.

Right now I lead a pretty much normal life. My IC has not returned, although I have not changed another hydrodistention, as I've heard that has aggravated previously healed cases of IC. I eat and drink whatever I want, although I still avoid coffee (even decaf seems to irritate me) and NutraSweet, the only artificial sweetener that really bothered me. Aside from that, I'm a normal person. My IBS is in no way problematic anymore, and in fact I think I would call that cured as well. I drink alcohol now and then. I've put on all the weight I lost (and more!). I'm not constantly miserable, or running to the bathroom.

So to summarize, this is how I went from being a girl crying on the bathroom floor to leading a normal life:

1. Strict elimination diet
2. Omitting all caffeine and acidic beverages
3. Avoiding products with strong dyes or fragrance/essential oils
4. Drinking 2-4 ounces of aloe juice every day
5. Drinking a cup of herbal tea whenever I felt a flare or symptoms of a UTI

Unfortunately there is no magical cure for IC. But I feel that if you are strict with your diet that you can achieve a very manageable condition, and perhaps even heal, like myself and lead a perfectly normal life.

I know there are some IC issues here that I have not address, just because they tend to be on the very personal side of things. If you have any question on my own healing process, or on IC or UTIs please don't hesitate to comment here or contact me!