Friday, March 29, 2013

I would like to introduce.......... Interstitial Cystitis (updated)

Yours truly at 30 years of age, with IC.

A humorous depiction of my lovely condition. Thanks for reading.

This is going to be an ongoing topic of discussion for me. I'm not going to sugar coat it, only present things as they are. The truth is I am totally overwhelmed. My life changed dramatically 4 months ago and ever since I have been on the most difficult physical and emotional roller coaster. That sounds very dramatic. But I have been pushed to the breaking point most days. As it stands, I have no guarantee that things will change for me, but I cultivate an awesome amount of hope, because I believe that I can heal myself. I have to believe. If I want my life back, I'm going to have to cook almost all my meals for at least the next six months and adhere to strict elimination diet - a plan where I take very good care of myself, and be extremely cautious not to slip into the deep end. It is a very complicated balancing act. I have Interstitial Cystisis. I don't know where to begin.

Basically - Interstitial Cystitis or IC is kind of an umbrella term for when your bladder breaks and the doctors don't know how to fix it. There are several theories about what it actually is and what causes it - whether it's repeated infection that breaks down the bladder lining, an auto-immune disorder where your body basically attacks your bladder and you produce inflammatory "mast cells", or simply a bacterial infection that our urine cultures can't detect. I think most Drs however can agree that IC usually involves an inflamed and sensitive bladder due to the fact that the mucous layer of my bladder has worn away or been scarred. And so in a nutshell everything I consume comes in direct contact with my bladder which gets very irritated and inflamed and then I actually grow more nerves so I develop a kind of "pain memory" down there. I'm in a lot of discomfort almost all the time, sometimes a great deal of pain, and I constantly feel like I need to use the restroom. Sometimes I feel I need to run to the bathroom every 10 minutes, on a normal day its about every 30 min. On a good day I can hold it for up to an hour, but that usually causes me a lot of pain afterwards, and more frequency to follow. In terms of diet I can't eat and drink a great deal of things including coffee, alcohol, most fruits, anything acidic, vinegary, or spicy. And here's the catch........ there is no cure. 

This is probably the most frustrating thing I will ever have to deal with in my life. Learning that it is chronic and there is no cure comes with a lot of emotional ramifications on a daily level. The hope that I cultivate is based on other people who have had this condition and have mostly recovered. And there are remarkably a lot of stories of people who have recovered, and even books written about it. So I'm not totally alone, but given that I've only personally met two people that know what I'm going through because they've been there, it makes for a very alienating condition.

So I am now my own clinician. This is what the one Bay Area woman with IC passed down to me - you are now responsible for your own health and you will have to keep a bladder diary pretty much chronicling what you eat and how you feel. You will start with eating just a few items and then after two weeks or so begin to add in one item at at time. Elimination diet.

At this moment, my bladder is inflamed and my crotch throbs and I feel like I have to go. It's hard to know if its the leafy greens I ate with my breakfast or the acupuncture herbal tea that I drank, the flouride in my drinking water, the combination of everything, or just my damn bladder itself being upset in general. That's part of the problem. IC patients really need to go on a strict elimination diet to determine what is causing their pain and what their "triggers" are. Dr. Matia Brizman out of LA, when she starts patients on an elimination diet, she makes them remove drinking water and drink only spring water, as well as taking out things like Flouride toothpaste. Super intense. Thus far I know 100% without a doubt that I cannot have beer, caffeine, chocolate, almost all fruits, anything acidic, anything high in Vitamin C, or anything on the spicy side. Anything artificial usually does it too. As for the rest of it - I'm trying to figure it out every day of my life what might increase my pain and discomfort. 

I have wanted to write about this for ages but I don't know where to start. The last 4 months of my life my world has been spinning. Crashing down. I cry a lot. Almost every day. Sometimes in public. Sometimes in private. I like to imagine myself healed in a couple years. I'm committed to doing whatever I can in the present to return to my regular life in the future. At the same time, I can no longer afford to think about much more than the present moment, as the rest is too overwhelming.

Of the course the flip side of all this is that I have learned a lot. I have learned that my life before IC was pretty fantastic. I can see now how capable I was, what a blessing it was to go through life not being in chronic pain, not having to stress about everything I consume or if I will be comfortable in any given situation, where the bathroom is, etc. My eyes have definitely opened up to how health is everything. 


Honestly, I've had bladder and UTI problems for many years, including one where I pissed a small amount of blood as a small child, but that was a one-time deal. I think the real problems started when I became sexually active. In college I didn't get too many infections. My senior year however, I had a boyfriend and got an UTI. I drank so much cranberry juice trying to get rid of the infection that I literally shat myself running to the bathroom. It was then that I was dawned with the nickname "uti". A sad omen for me. Living in Russia in my early 20s, I came down with a few UTI's and a Kidney infection and was in bed for two weeks. An ultrasound showed my Kidney was inflamed. I remember the lower back pain and remembering feeling like I couldn't sit or sleep in certain positions. But after that I returned to a normal life.

After Russia I moved to Egypt for two years, and I remember having a particularly painful UTI at Temple Karnak in April 2010, crying in pain when the bathrooms were not yet open because it was too early in the morning and I needed to go so I ran and found a place out in the open to go where no one would see me. I also remember trying to do Yoga through the UTI and being in horrible pain and returning home to get in the bath before I went out to get meds. At one point I was getting extremely uncomfortable lower back pain, making it really difficult for me to sit at the desk and process my photos for work. I went to the local pharmacist who asked me a couple questions and told me my lower back pain following a UTI was likely a kidney stone or something along those lines. He sold me Moxiflox, a flouroquiloline and some very strong antiinflammatories. The Moxiflox or the unfortunate combination of the two gave me a very serious panic attack, which left me up shaking all night in terror, unable to sit still, and shaken up for more than three days afterwards. Luckily the UTI and back pain went away.

I moved to California in July 2010 and got together with my boyfriend started to get UTI's quite regularly. Often I would go back and forth between a UTI and a resulting Yeast Infection from the UTI antibiotics. It became a vicious cycle that many women are familiar with. Often during these bouts with UTI's I started to fight them with Cranberry juice, but when that didn't work I moved onto other things: Cranberry pills, which are very potent, Uva Ursi, shots of Apple Cider Vinegar, Stress tabs, Vitamin C tabs, you name it. All of those things that I just listed are incredibly bad for someone with IC - as they all cause tremendous pain and damage to an IC bladder. Looking back, I wish I could have known in hindsight what was going on - I could have seen an acupuncturist or a nutritionist... attacked the problem differently... I could have changed my diet... something, anything, but firebomb my system with antibiotics and supplements that were destroying my bladder lining.

So, I can say that the IC symptoms probably began at the end of 2011 when I got what I thought was a UTI (burning urination, frequency) but 3 courses of antibiotics later, I was still running to the bathroom constantly. Now here's the catch. This time I had some Macrobid leftover - half of a week's course, I took 3 days to releave my symptoms, and then asked to have my prescription refilled to finish the course. This is all without a pee test. No culture. I think I returned to the free clinic at this point and they put me on Cipro. I don't remember if I had a clean urine culture at this point, but I went through with the Cipro, and I was still in agony. I was drinking pure cranberry juice. I bought into health insurance because I was desperate. I went to the real Dr. and she tested my urine and it came up CLEAN. I constantly needed to go - I would go the bathroom, urinate, stand up to wash my hands, and desperately feel like I needed to go again. Bad. I can't really emphasize how maddening that feeling is. The Dr. was stumped. But prescribed me Bactrim, not knowing what to do, assuming that maybe it was a different strain of Bacteria that the urine test wasn't picking up. I called my Uncle. 3 courses of antibiotics in a row, my body was starting to feel really weird, creaky, lethargic. I told him about the clean urine culture. He told me to get off the antibiotics as I didn't have an infection. So I did, probably stopped drinking cranberry juice too. And after a couple weeks, things eventually cooled down and I was able to resume a normal life.

This happened again once more in 2012. And then again over Thanksgiving 2012, when the shit finally hit the fan. I tried to cope with it this time - assuming that it would eventually return to normal - like last time. Come December, I was starting to lose my mind. One day I had to leave my job at the Berkeley Farmers Market because I just had to run to the bathroom every fifteen minutes and I was in a lot of pain. I left in tears and road my bike to the clinic to get tested, all the while having a premonition that something was different about this. Unlike a UTI or Bladder Infection, I wasn't having the classic burning sensation when you pee. Instead I felt a pressure in my bladder and the overwhelming need to go constantly. My fears were confirmed. They didn't find much in my urine. But they figured it was just an infection anyway that the tests didn't pick up on so they prescribed me Cipro and gave me some Diflucan to take with me too. I flew home for the holidays, concerned that my family would once again be disappointed with me in this poor state. The same way I was for Thanksgiving 2011.

I remember the flight very well. I got an aisle seat knowing it was going to be extremely tough for me. I was very nervous and uncomfortable and on the verge of tears. I asked for apple juice and water, unaware that even something as innocent as apple juice causes flares for someone with IC... My mother picked me up from the airport, and I tried with all my might to act normal. But eventually I broke down.  I knew everything was not OK.

I didn't take the antibiotics. I was pretty sure I didn't have an infection, but didn't know what to do. After a couple days of increased discomfort, I called the lady from the clinic and admitted I hadn't started the antibiotics yet, but that I was getting some really intense lower back/pelvic pain which I was worried might be Kidney related. She encouraged me to take the Cipro, reminding me of how serious Kidney Infections are - how they can spread to the bloodstream, etc. I started the Cipro. At first nothing. Still uncomfortable. Still running to the bathroom constantly. Still depressed and stressed out. Strangely enough, on the third day I remember feeling almost normal. I started writing in my journal again about my plans to go to Congo this summer, get a new DSLR and start working on a story there with my filmmaker friend. I felt a great deal of relief. The next day, however, I went back to feeling shitty all over again, bladder pressure, running to pee constantly.

It wasn't until I got back to California that I finally got a call back from the clinic, regarding my urine culture. Again, my fears were confirmed. The lady at the clinic left a message saying she was so sorry but they found nothing really wrong with my urine sample, but that I should consider looking at Interstitial Cystitis as a possible culprit. It was what I had feared all along.


These are the more recent incidents I can dig up. I'm sure there's a million others that I don't have record of.

  • Jan 2010 UTI, followed by antibiotics, lasted nearly 2 weeks?
  • Aug 2011 UTI lasts a week, Macrobid, cranberry pills, cranberry juice, pain comes back, so followed with Cipro, more juice, more pills, dandelion tea. This is followed by feeling soar in my seat. Pain over my tailbone and centered above my buttocks.
  • Nov 2011 - Dec 2011 UTI, Macrobid, no success. lower back pain over sacrum. Cipro. No relief. Urine culture coming up clean. Dr. stumped. Prescribes Bactrim. Called uncle. He said if you have no infection get off the pills. Got off antibiotics. After several weeks, achieved some normalcy. I plead and demand to see a Urologist at Highland Hospital where I am covered by my poor people insurance. They give me a referral. I never hear back from them until over a year later
  • May 2012  - UTI, Cipro, Vitamin C, very potent Cranberry pills (4-6/day), D-Mannose and Uva Ursi. Followed by pain during intercourse. Lower back pain. Feel like I can't empty my bladder. Tried Acupuncture for first time. First time I start to suspect IC. I read on this website: "IC is often misdiagnosed as a urinary tract infection. Patients can go years without a correct diagnosis. On average, there is about a 4-year delay between the time the first symptoms occur and the diagnosis is made. Symptoms: Pain during intercourse, Pelvic pain, Urinary discomfort, Urinary frequency (up to 60 times a day), Urinary urgency." Gulp. 
  • June 2012 - I start to suspect that the cranberry pills and acidity was making me worse. I am still peeing constantly. Sex without lubrication also makes me flare up. Begin to shy away from sugar, caffeine, and cranberry pills. I write to my mother, "When I wake up in the morning, I can really feel the burn from my urine hanging out in there all night." My mother suggests that maybe it is emotional. I admit I may not travel so much if my bladder problems continue. Makes it too difficult. 
  • November 2012 Persistent Yeast infection. Try Monostat 1. The insertion of this thing into my vag seems to make me burst in pain. Burning pain. Way worse than the yeast infection. Also the yeast infection does not go away. I go on Diflucan. Extreme diarrhea. I feel weak and awful. This is Nov 13-18th. Maybe it wasn't a yeast infection at all...
  • November - December 2012 - The frequency starts on Thanksgiving Nov 22nd. Similar to the symptoms of a UTI but something feels different this time. No burning when I pee. I consider maybe this is IC but don't want to consider it too hard. Urine comes up clean upon visiting the clinic, they send my urine for culture for further inspection. Fly home for the holidays. Take Cipro. Feel relief on last day. All symptoms come back. I fly back to California. My urine culture comes up negative. They suspect IC. I start to leave urgent and persistent messages on the voice machine of the Urologist at Highland Hospital, begging them for an appointment.
  •  January 2013 - Urology Apt 1 - Dr. prescribes Maalox and asks for a X-ray next time. 
  • February 2013 Urology Apt 2 - Xray reveals I am very constipated still. Dr. orders bladder and thyroid ultrasound and cystoscopy. I begin IC Diet.
  • March 2013 Urology Apt 3 - Cystoscopy fails as my parts are too small and tight and Dr. is afraid to hurt me. Order cystoscopy under anaesthesia for end of April. Urology Apt. 4 - Ultrasounds. I am not told the results. 

Looking back, it's easy for me to see now that if I was with one Dr. this whole time, or if Highland answered my pleas to see the Urologist back in December 2012 when I desperately needed to, I would have been diagnosed with IC back then and I could have controlled it with diet. Unfortunately, I was allowed to attack my bladder for another year with antibiotics, yeast meds, and acidic foods, drinks and supplements that may have made my condition irreversable. To think that I could have simply invested a couple grand in getting myself to a reliable Urologist who was versed in IC breaks my heart. I've come to terms with this. But it's like that question you ask old men in jail - if you could say one thing to the young man who was you what you tell him - I would have told me to dump all my money into finding an IC knowledgeable Urologist and fought my condition while I still had time...

I think when anyone comes down with this condition, there is a lot of emotional baggage that comes with it - that in combination with the physical distress, can be enough to push anyone over the edge. I can say from my own experience about the past four months is that the main thing about this condition is how alienated it made me feel. Alienated from my friends. Alienated from my mother. Alienated from my sister. Alienated from the new people I see at grad school orientation. Alienated from my lover. Alienated from myself. Alienated from the food and drink put in front of me. Alienated from these words as I write them because I can imagine how they sound to someone who doesn't understand what I am experiencing. I was once a person so excited about life. I was really getting on top of it. Learning to love myself and all my achievements and potential. Preparing to head to the DRC and get a lead on a story to make a film. I just got my new passport and was even looking for a subletter for the summer. I got into grad school. And then this.

As soon as I came down with IC, I had to stop taking all my supplements because my bladder can no longer deal with ingredients as simple as ascorbic acid which is found in Vitamin C products or in my Fish Oil, in the Adrecore I was taking in the morning and the Travacore I was taking at night. Even my Probiotics are on the "No" list for now. The only supplement I am taking is Magnesium - which is for constipation and clenched muscles down there, which I'll get into later. All the good things that were balancing my digestion, my nuerotransmitters, my everything, poof. Overnight.

I'm guessing anyone who has read this far is bored by now or losing interest. I understand, if I were on the outside, I would have lost interest too. Who wants to spend their time reading about this and thinking about this? That's precisely why I'm so upset. I had planned to be in Africa right now shooting photos and video! But this is what I'm going through and writing about this is just the beginning of a long healing process that I need to go through.

One of the strange things I've been noticing about my IC is that it seems to be getting pickier and pickier. At first I just seemed to have frequency. I coped with that for years. Then the frequency got very intense. And then eventually I started to get pelvic pain, urethral burning, clenched muscles, hesitancy and a host of other symptoms including painful sex, constipation, etc. There is a lot of science to back this up this spiked increase in pain and sensitivity. IC patients often see a breakdown in the mucous layer that protects a healthy bladder. So everything I consume comes into contact with my bladder and the bladder is like an open wound in my body. Unfortunately I cannot simply dress the wound, cover it up, put it aside, and let it heal. Wish I could. Instead it's constantly being bombarded with food and drink and toxins. And so my bladder is actually building new nerve endings, creating further inflammation and that dreaded "pain memory". Super fantastic. Hence the pain seems to be getting more intense. The flares are lasting longer. Sometimes I feel like I am in constant flare. I am having trouble discerning if I am ever not in a flare. I am prepared to do anything to achieve some level of normalcy in this department.

I'm going to stop writing for now, but here's a list of what I'm trying, tried, and what I look forward to trying. And on a closing note I just want to add a few positive notes. First, if you're going to come down with IC, the Bay Area is probably one of the best places in the world to do so. We have a host of alternative healers including acupuncturists, herbalist, massage therapists, etc who are familiar with this shit condition. Two, I have faced this shit directly in the face and told it it will not win. All of the depression issues that have followed me my whole life now seem laughable and I have been forced to look at myself, unable to run from my problems. If I choose to look at it this way, this IC has forced me to grow up, fast. I am no longer the carefree whimsical bubbly young lady I used to be, but I am tackling the ugliest demon of my life - a demon that has forced me to come to terms with all the other shit that used to haunt me. I am on the path of self discovery. God willing I am on the path to health as well.

  • Hydroxyzine (anti-histamine to control bladder inflamation, started it a few weeks ago and went off it in less than a week because it made me so lethargic. Was sleeping 9+ hours a night on it.)

  • Strict IC diet as laid out by Dr. Matia Brizman out of L.A. (this is the old version there is a more updated, more intense version here:
  • Acupuncture 2-4x month (when I'm not beating myself up for spending money on it, at first I was going twice a week for a month - that equals $600. )
  • Painkillers and Pyridium for pain management
  • Hot Epson baths and heating bad for more pain management, and clenched and aching pelvic floor
  • 2-4oz of Aloe juice a day (the real stuff, not the stuff you see at the grocery store)
  • Hell of exercise, meditation, and chamomile tea
And a list of things I have not tried yet. Reasons to be optimistic and believe that my life may some day go back to normal....

  • Marshmellow root (very excited about the pain relief this might help with)
  • Prelief (anti-acid for IC patients, just got some in the mail) 
  • Baking soda in water?
  • Bikram Yoga (probably better for me than kickboxing right now, so will probably switch next month)
  • Physical therapy (starts Monday morning)
  • Weekly meetings with other women who suffer from chronic pelvic pain (starts Sunday)


Mossville said...

hey Sar-
writing about this may be therapeutic, and perhaps you can even connect with others who may have similar experiences. I do agree that yoga is a good idea for you, I hope that as well as other things you are trying will help. If the IC diet doesn't do it perhaps try the GAPS diet? I was going to say fasting- but often that is juice and for you it would have to be a veggie juice fast- they say purple veggies like cabbage, cauliflower, pak choi are good .Big Love to you.- xo

Jayde said...

You have written my story, and on almost the exact timeline. I am currently bed ridden after my Cystoscopy 5 days ago. I am unable to stand for longer than about 20 min. I live in Sacramento and have been unable to find any others with IC. I'd like to join or start a group. My family and boyfriend get tired of hearing about my disease. It would be nice to talk to someone who understands my pain. Please feel free to email me.

Jewels said...

Wow! I could have written this! Some symptoms are different in my case, but you expressed exactly how I feel so eloquently. I don't have exactly the history you do. I've had about 5 or 6 UTIs in my life and in April I thought I had another one and once I got some antibiotics I would be fine. Nope, not fine! Thankfully I did research right away and started on the diet before I even saw a doctor. I was diagnosed very quickly and started on Elmiron and Elavil in June. I have to say these 2 medications have cut my 20/10 pain down to about a 2/10 and sometimes a zero. My main symptom is burning, burning, burning pain. Occasionally I get frequency, but rarely. And I don't get the waxing and waning people speak of. My symptoms started over night and pretty much stayed that way. So frustrating! At first I couldn't eat a thing, as everything I ate was like poring battery acid on my bladder. Now I can get away with a lot more. And I do take prelief when I have the occasional glass of wine or something. I'm currently seeing an integrative medicine doctor down here in San Diego who believes IC is more a symptom of a larger issue rather then a stand alone disease.. I tend to agree. I'm currently waiting for all the results from test he's running on me to come back. Also, on a side note... I have now met about 7 people with IC and all but 1 are in their opinions cured or have been in remission for years. It really does get better, even if the Internet paints such a bleak picture. I figure when people feel good they forget about IC and don't post online.. So we get a skewed view of this debacle of a disease. Please email me if you wanna chat and share notes. Good luck to you! -Julie

stargazer said...

Thank-you for sharing your blog on Interstitial Cystitis. I can totally relate to your symptoms & the whole feeling of desperately wanting to fix this bugger! Im waiting to have a Cystoscopy but the symptoms are definitely IC & antibiotics don't work on me. All the other tests showed nothing, but bleeding from the bladder twice last week & I thought it was kidney stones so I drank lots of apple cider vinegar & I was eating seeds! I learnt that I.C. sufferers must stay away from all those things!

I was diagnosed with Adenomyosis 4 years ago, and 2 years ago two autoimmune (Hashimoto's & Grave's). These symptoms have settled a lot with diet!

I have the belief that we can heal anything naturally. Although it's been so challenging!!! 18 months ago I stopped eating dairy, wheat, sugar, fruit, etc. Then discovered last week that seeds, apple cider vinegar, etc make me bleed..So now I eat vegetables, meat, eggs, coconut & not much sucks! But Im sick of bleeding & being in pain.
I researched that herbs can help I.C. sufferers heal the bladder walls & nerves. So I bought $50 of them 2 days ago: Organic Nettle, Cats Whiskers, Herb Robert, Willowherb, and Mullein for nerve pain. Half a teaspoon of each & fill a teapot with hot water & drink though the day.
Thanks again

camnpog said...

Please do NOT take Fluoroquinolones ever again not just for what they did to your mind, but they also may make the Achilles tendon POP and need surgery! THey may also affect tendons in hands and hosulders as well. Also, please make sure oyu odnt get any MRI's with contrast as the contrast stays in teh body (in my case in HIGH maounts over 7 years ago was my last) and I still test HIGH! it casues fibrosis of the skin outer & inner!
Drugs/DrugSafety/PostmarketDrugSafetyInformationforPatientsandProviders/ucm126085.htm NOT just for healthcare providers!

there are many groups online on FQ tox!

EMC said...

Mine started over 30 years ago, was not diagnoses until around 2006, and wasn't told there was treatment until last month,. WELL turns out the treatment is wirse5 than the disease possibly, antidepressants ( I callove zombie bills, and daily antibiotics for life. Therefore I am trying the holistic path. I end up laying down with a heating pad for days. A trip to the grocery store or any activity puts me down. Carrying heavy items etc all cause an episode. It is all excellent ting and I cannot plan anything which no one gets. Sex has nothing to do with it in my case since that's out of the picture being older and divorced,so don't think that's always a cause. Glad most of you found out much earlier in life than me, as the damage is progressice, making an actual UTI 10 fold in symptoms (hell on earth) Limited on finds at this age (SS) so limited resources, no yoga, acupuncture, or much holistic meds. Say away from teas with tonic acid (fyi)
Peace & blessings fellow IC sufferers.

EMC said...

Excuse the type o's (drat this phone)

Demy Dillon said...

Thanks, great post. I really like your point of view. A few months ago I tried PeaPlex from and PeaPlex is very helpful, therefore. I now have a lot less complaints