February 23, 2012

How I Healed My Interstitial Cystitis: Part 2 - Treatment

This post gets so much attention, I've decided to update it a bit. If this is your first time visiting my blog, I would suggest that you start with this post, which talks about my diagnosis. If you have additional questions after reading those posts please feel free to message me for details.

For those looking to hear how I treated my diagnosis and what I'm doing now, here you go:

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. Instead, my doctor prescribed it for "off label" use to treat IC. 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. I would like to add that many people have positive reactions to Elmiron, but unfortunately it was just not the right treatment for me.

During this time, and I'm not sure if was because of the IC although I'm positive that the two are linked, I also developed 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. No one actually told me this until years later, and I have to say, I was pretty disappointed. I mean, you guys thought I was bulimic and no one said a damn thing to me for years!? Thanks!

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 softeners that had strong dyes or fragrance.

Eventually I gave my bladder a long enough break from any acidic foods that I could start eating adding in other foods very slowly. 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 also started drinking aloe juice every day, which I typically mixed in with Kool-Aid.

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 couldn't 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. I have spoken with some individuals who were not able to drink aloe juice because of the citric acid preservative. Those people reported to me having positive results with aloe soft gel pills.

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, depressed, and mostly reclusive. I essentially only left my dorm room to go to class or work.

Gradually I started to add foods back into my diet, I would eat fruit, I might have non-citrus fruit juice now and then (watered down, though), I ate all sorts of vegetables, and had occasional soy products 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). Hot chocolate may still be too acidic for a lot of people, however.

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 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 and because I was later diagnosed as having Psoriatic Arthritis). Having a UTI sucks, but at least it's easily treatable! My UTIs always responded to antibiotics within a day.

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 2010. Around that time I started using herbal supplements. I purchased my herbs from Jean's Greens, in Upstate New York. 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 African 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. (DISCLAIMER: I have seen some people suggest that I am being paid by Jean's Greens to target IC patients and I have also seen people questioning my story because I don't focus on the many negative and depressing aspects of IC and what it can do to quality of life. These accusations were very disheartening and upsetting. I am simply sharing products that I feel helped me in my healing process).

The current state of things...

Right now, I lead a pretty much normal life. I would say that my IC is in remission. I have not had any IC symptoms since approximately 2010 and I haven't had a UTI since 2011. Although I have not had another hydrodistention, as I've heard that has aggravated previously healed cases of IC, so I cannot say for sure if my ulcers are healed. I believe they are. I eat and drink whatever I want, although I still avoid NutraSweet, the only artificial sweetener that really bothered me, jalapenos, and large quantities of citrus. Aside from that, I'm a normal person as far as IC goes. My IBS is no longer problematic. I'm not constantly miserable or running to the bathroom.
Unfortunately, there is no magical cure for IC. But I strongly believe that IC is affected by diet and that by following an elimination diet and a strict adherence, there is a chance that a person can achieve a very manageable condition, and perhaps even heal.

In 2016, I was back to having a lot of health issues and was back on a lot of medications, although most were not bladder or IC related. I decided to make some changes in my deteriorating health and purchased a membership with Young Living Essential Oils.  I began purchasing all of my supplements from them because they offered the membership, which was more economical than paying full price, and because they offered a wide variety of high quality herbal essential oils and supplements. I also started my own group of people who are on  or want to begin a similar journey to improve their wellness and lead a more chemical-free life. (Disclaimer: I want to be up front about this - If you end up purchasing Young Living product through one of the links in the blog, I may get some sort of financial compensation).

This post details the oils and supplements that I am using in my daily life at the moment.

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 questions regarding those topics, feel free to email me.

This post was last updated 9/2016