February 23, 2012

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 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.

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!

23 comments:

  1. I was actually looking out for natural measures to cure Cytitis. Thanks :)

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  2. So glad to read yet another IC Success story! I've heard many good things about George's Aloe over the year, including a young boy with IC who had terrible urethral burning and this product helped reduce his discomfort dramatically. Similarly, Desert Harvest Aloe also has a very strong, double blind placebo controlled study showing that their product can also be very beneficial. Well done!!!!

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  3. Thank you so much for posting your story. I hadn't heard of aloe vera and it's usefulness in helping IC until I read this. As it turns out, I've had a lot of success getting relief from symptoms with the tea you recommended and with aloe vera (using the Desert Harvest aloe capsules). Thanks for the help!

    Justin

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  4. Thank you for this amazing recovery story. One of the best IC recovery stories I've read. Gives me mucho hope.

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  5. This is great! I've had IC for almost two years and still get nervous traveling. I used to love to get in the car and go, but have found that is hard to do. I'm going to check out aloe! Thanks!

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  6. I am so happy that I found your blog! I am 23 and was just diagnosed last week. After leaving the pharmacy crying when they told me how much my prescriptions are going to be (Elmiron being one of those), I have been trying to do my own research.

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    Replies
    1. Elmiron is so expensive! Mine was something like $900 without insurance, luckily my insurance covered it at the time, but it was, I think, $40 a month still - and that was in 2004! Stay optimistic, try alternative medicines too, hopefully you'll find something that works :)

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  7. So good to hear a success story. I have had IC for almost 4 years. Medication is out of the question because of side effects and no insurance and diet alone and even accupunctue has not been enough. After reading your story, I am going to Sprouts to get George's Aloe Vera. Yay. Started doing pelvic floor exercises along with yoga. So far so good. Thanks for the info on George's. Have you heard of D-mannose for UTI's. That's how mine started too. Keep D-mannose when I feel it coming on. That and baking soda. Eager to heal!

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  8. I am 48, Male, and dying of IC. Nice of the author of this Blog to address her means of cure! A cheap $5.00 supplement that came in the junk mail over these past 13 years, allows me to live. (If the manufacturer finds out, he'll jack up the price I'm sure). It is Urinary Care 27, Health Ctr for Better Living, Naples, Florida 800-544-4225. It's natural herbs that numb the bladder; just 1 pill. I take it when I need it, and also the antibiotic cephalexin which reduces inflammation during burning infections. Aloe Vera juice hurts me. If I had taken it at the beginning and cut out sugar, I would have probably been cured. Now, I'm barely surviving, with just a little hope. I'm going to try a sublingual tincture for pain from the 1st American Co. in the U.S. (in Colorado) which the FDA has allowed to market using Cannabidiol from Hemp (no illegal THC): dixiebotanicals.com Pray for young teenagers whose posts I've seen where they're contemplating suicide. No medical journals track the countless IC suicides. Most of all, if you're cured, share like this blogger did, and maybe you'll help the neediest of all: little children that have it; my god.

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    Replies
    1. I like everyone else have tried everything and eaten very bland foods! What I am finding incredibly effective now is the D-mannose, 3ginger capsules, 3 tumeric capsules, 2 cayenne pepper capsules with each meal! all the spices are ant-inflammatory and cayenne is a numbing agent and heals ulcers! I was scared at first, but was shocked to find these things amazing! God's pharmacy is always best!
      Angela

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    2. Have you had any success with the hemp oil, and if so, what dosage are you taking? I'm a 47 yr old female diagnosed with IC 8 yrs ago. I have tried Elmiron and changes to my diet, but my symptoms have never improved. Over the last year, my IC has progressed to the more serious stage with Hunner's ulcers and the pain is excruciating at times.

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  9. I'm getting a whole lot of help reading your article. I suffer from painful bladder issues at times and am trying to find the right approach for coping with it. I may have IC or PFD or both the docs are never really sure per say. Anyhow going to start with the Aloe 100% and the PPT tea - the Buchu leaf not sure about yet. They're (website) saying to use caution with that.

    Jonathan

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  10. I've been doung better with weekly accupuncture from someone trained in NAET, benedryl, ativan, and if in a flair all of these and hydrocodone. Reading that hemp derived cannabinol has no THC, no high, and has an anti-inflammatory and antianxiety effect. I'm going to try the aloe and teas you mentioned, although aloe didn't help in the past. I'd like to stop using pharmaceuticals. Thought cannabinol without THC might take the place of the benedryl and ativan with no associated sleepiness. No underwear helps on non-work days. Besides diet, stress from work creates the most issues. I wish the medical community would work with naturopaths and other healers to research IC/VV and find the cause and cure without invasive procedures and pricey drugs. They are in business though and we are in a capitalistic society. I've learned more about treating my condition from fellow sufferers than all doctors combined. Thank you.

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    Replies
    1. Very well said - but I think the free market place enhances discovery. The incentive is always a reward and if that's taken away we'll have nothing to motivate people in science. This condition seems like an easy fix in my humble opinion. Its a reactive response to something the body does not like...The medical community at the university levels should look into naturopathic medicine, whats going into our municipal drinking water and food production. Seems like an allergy to something right in front of our nose?

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  11. Thanks for the info! I'm 29 I was just diagnosed with ic last year. I refuse to take the Elmiron and the bladder installations were hell so I'm trying to find a natural cure. I've been drinking marshmallow root tea and it's been helping immensely! I've recently gone vegetarian and I've caused a flare up, just wondering what type of foods you're eating?

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  12. I have ordered Desert Harvest Aloe Vera. Waiting for the delivery.. I am having IC for 6 years now. Hopefully i get some relief from Aloe Vera so i can stop taking Elmiron

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  13. I have ordered Desert Harvest Aloe Vera. Waiting for the delivery.. I am having IC for 6 years now. Hopefully i get some relief from Aloe Vera so i can stop taking Elmiron

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  14. I too had IC for 7 years until I read a blog of a girl suffering from the same symptoms. She figured out through elimination diet that her issue was GLUTEN! I had quit eating everything else but gluten, so I tried it. IT CURED my IC. May not work for everyone - but I wish everyone with IC would try it in case that is what is triggering theirs. Gluten is hidden in everything, but I gladly follow it because I feel awesome! You can see my story at www.theglutenfreetexan.com . God Bless!!

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  18. I want to thank rick Simpson and the entire management of ricksimpsonmedicals for their life saving cannabis oil that cured my wife’s thyroid cancer,the doctor told me there was little he could since despite all the chemo and radiation,she wasn’t responding to treatment.so a friend of mine came to our rescue by ordering this cannabis oil from rick Simpson medicals which he said rick has been helping patients fight against cancer of various types so we decided to give it a try,so far my wife is improving very well and presently she can walk around the house all my herself.i felt it’s necessary i let others especially those suffering from this acute disease that once you have a good cannabis oil,it can really give a second chance at life.if you happen to be in dying need of this cannabis oil,you can contact the foundation who supplied us with this email:ricksimpsonmedicals01@gmail.com

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