Leesa White's IC Success Story

PART I – WRITTEN IN MAY 2017

Interstitial Cystitis – You Can Get Well

The Day It All Began

It was September 9, 2002.   As with many of the people I have met who have been diagnosed with IC, I remember the exact date it all began.  I was leaving the next day for vacation, and I started having symptoms like I was getting yet another bladder infection.  I had a lifetime history of UTI’s (I was in my early 50’s when I was diagnosed with IC, but had my first UTI as a teenager), but I always just took the antibiotics and got better.  So I called my urologist and got a prescription for Levaquin, and left on my vacation.  The first round of Levaquin didn’t seem to help, so I called my urologist and got a second round of Levaquin.  That didn’t seem to help either.  The frequency, urgency, and discomfort kept getting worse.  So I went to the local emergency room (in Indianapolis, Indiana).  The doctor there did an exam and checked my urine.  He said the urine was clear, but that could have been due to the two rounds of Levaquin.  But he also said that, based on my symptoms, I might have a rather rare condition called interstitial cystitis and he recommended that I get back to Houston (my hometown) as soon as possible and see my urologist.  That was the first time I had ever heard the term “interstitial cystitis.”

The Diagnosis

I cut my vacation short and returned to Houston.  I was able to get in to see my urologist the day I arrived back in town.  She gave me some additional prescriptions to help with the frequency and burning.  I continued to try and work every day (I work in an office setting and have a fairly flexible schedule, but it was still tough!).  In the meantime, I researched as much as I could about interstitial cystitis.  I would sit in front of my computer and my stomach would just flip flop when I would read all the negative and depressing things written about the condition.  I hoped in my heart that I did not have IC, but I wanted to know one way or the other.  So I asked my urologist to do a cystoscopy with hydrodistension to see what my bladder looked like.  Although the “then” guidelines suggested this procedure not be performed until a patient had symptoms for 6 to 9 months, I did not want to wait that long for a diagnosis.  So on October 27, 2002 I had a cystoscopy with hydrodistension.  The procedure showed the glomerulations and bloody efflux suggestive of IC.  I was glad to have the diagnosis; however, I must say that I can’t recall ever experiencing as much pain as I did following that procedure.  The recovery room nurses tried to get me comfortable, but even IV morphine didn’t do the trick.

Finding the Right Doctor

The next step after the diagnosis was deciding on a treatment plan.  I went to an IC specialist that I located through the ICA website.  He wanted to treat me with DMSO.  I told him that was not my drug of choice and he told me that was his first line treatment and if I didn’t want to do DMSO treatments, I should go elsewhere.  I went elsewhere.

I saw a couple more urologists that “advertised” specialization in IC, but didn’t find anyone more willing to work together with me than the urologist who had done the hydrodistension.  The urologist’s knowledge of IC is obviously important, and the scope of his or her experience with IC patients is obviously important, but it is just as important that your doctor be someone who will listen to you and include you in decisions about your treatment.  My urologist is a wonderful doctor – open-minded, empathetic, responsive, and informed.  Together we reviewed the possible ways to treat my IC.  I did a lot of internet research, went to all the IC websites I could find, read all the books about IC I could lay my hands on, and talked to many other IC patients on the phone.

Chinese Medicine

I decided that I wanted to take the most conservative approach first.  Thus, I started out with a natural approach revolving around diet modifications and Chinese herbs.  I treated with a well-known doctor of Chinese medicine who had quite a few other IC patients.  The program consisted of a specially prepared combination of herbs to treat IC, along with a very stringent diet to eliminate the foods that irritated the bladder.  I started the herbs and diet on Thanksgiving Day, 2002.  During the first 4 weeks, I noticed a definite improvement.  My frequency and urgency decreased and, very importantly, I was able to get a better night’s sleep (critical if you are still trying to work!).  I recall that by Christmas 2002, I didn’t feel great, but I was able to enjoy the holidays.  But then things started going downhill.  Until that point, I had frequency and urgency but no pain.  In January 2003, not only did the frequency and urgency become worse than they had been in the beginning, but I also started having a great deal of pelvic pain and – what for me was the worst symptom of all – constant burning in the vulvar and vaginal area (not just after urinating, but all the time!).

The Decision to go on Disability

The physical symptoms of my IC (frequency, urgency, pain, and burning) made it very difficult to work.  The emotional trauma of what I was going through also made it very difficult to work.  But the straw that broke the camel’s back was that I was only getting 1 to 2 hours of sleep a night.  I started to take sleep aids (Tylenol PM, Ambien, Benadryl) to try and get more sleep.  The pain became so bad that I started using Vicodin on a regular basis.  Between the symptoms, the meds, and the lack of sleep, the quality of my work went downhill and it was almost impossible to focus or concentrate in the office.  So I had a talk with my boss (I was very lucky to have a wonderful and understanding boss), and we agreed the best thing would be for me to go on short-term disability.  Fortunately, my company’s short-term disability plan was quite generous so I was financially able to not work for a while.  I went on disability towards the end of March 2003.  As it turned out, I did not work for a little over a year, and I truly believe the ability to take time off and focus solely on getting well was a key factor in my recovery.

Plan “B”

I believed that the Chinese medicine was not working for me, and decided to move on to Plan “B.”  My urologist and I just needed to figure out what Plan “B” was!  I made a list of possible treatments, which included:  (1) Chinese medicine; (2) Elmiron; (3) DMSO; and (4) long-term antibiotics.  I identified the “pros” and “cons” associated with each of these treatments.  I had already concluded that I didn’t think I could get completely well with Chinese medicine alone.  I had also already decided that I would only try DMSO as a last resort.  That left Elmiron and long-term antibiotics.  I knew of patients who had had success with both of these alternatives.  After three weeks of wavering back and forth between Elmiron and antibiotics, I decided to take the Elmiron.  I got the prescription filled, and took my first dose of Elmiron one night in about the third week of March 2003.  When I got up the next morning – call it woman’s intuition, gut feel, a message from God, whatever – I just felt in my heart that taking the Elmiron was not right for me and that I wanted to try long-term antibiotics.

Neurontin and Long-Term Antibiotics

Some patients like to try one drug at a time so they can figure out which drug is working for them.  I took more of a shotgun approach, i.e., take numerous drugs and if one of them works, thank God for the relief and figure out later which one worked.  I had read the books by Catherine Simone, and paid heed to her advice that the first step to recovery has to be to get out of pain.  Fortunately, my doctor was willing to prescribe pain meds, and by taking Vicodin I was able to get my pain under control enough to at least think and reason.  The majority of patients I had talked with who had gotten – and stayed – completely well were the ones who had taken long-term antibiotics.  Since I believed that my problem was due to bacteria, that treatment plan made sense.  In the meantime, I had also talked to numerous people whose symptoms had been helped by Neurontin (Lyrica was not yet on the market at that time).  I decided to combine the Neurontin and antibiotics to try to get my symptoms under control.

I started the Neurontin the last week in March.  It was a good thing I wasn’t working, because there was no way I could have worked the first 4 – 6 weeks I was taking the Neurontin.  I was in “la la land”:  I could not read, I could not watch TV, I could not pay bills or balance my checkbook, and there was no way I could drive!  The Neurontin affected my mental capabilities, as well as my physical coordination and balance.  However, after the first month or so, these side effects began to decrease and my body began to adapt.  I stayed on about 1200 mg of Neurontin for about a year, and was able to function quite well at that dosage once my body acclimated to it.  The Neurontin really seemed to help my symptoms, particularly the pain and burning.

About a week later, beginning on April 1, 2003, I started my long-term antibiotics.  At first I took Augmentin, which is Amoxicillin with Clavulanate Potassium (the potassium salt of clavulanate acid).  Although Augmentin had proved effective for some of the other IC patients I had spoken with, it can be harsh on some IC bladders due to the clavulanate acid.  My bladder turned out to be sensitive to the Augmentin, so after about 6 weeks I switched to Amoxicillin.  I stayed on the Amoxicillin until December 1, 2003 (gradually titrating the dosage downward during October and November).  The dosage I took for most of that time was 250 mg three times per day, but your doctor should advise on the dosage as this can depend on your weight and the nature of your condition.

The entire time I was on antibiotics, I did a number of things to make sure that I didn’t develop an uncontrollable problem with candida:

1. I took prescription antifungals every day.  With each dose of antibiotics I took an oral dose of Nystatin.  I also took a dose of Diflucan between 1 or 2 times per week.

2. I took lots of probiotics.  Because the probiotics can render the antibiotics ineffective if taken too close together, I always took the probiotics no more than 1 hour (2 hours if possible) before or after taking the antibiotics.

3. I really, really watched my diet.  I stayed away from anything with yeast or sugar.  Thus, I didn’t eat breads, ate only limited starches (rice, potatoes, pasta), no fruits, and nothing with sugar (including the “sugar” vegetables like beets, corn, etc.).  I drank only water, and after some months added peppermint tea.  Absolutely no alcohol!

In addition to the above three precautions, I got lots and lots of rest!

After about two months on the above regimen (that is, Neurontin, long-term antibiotics, antifungals, probiotics, Vicodin as needed for pain, and some occasional other prescription and OTC meds as needed), I noticed a marked improvement.  I started being able to go to movie matinees and actually watch most of the movie.  I started sleeping better at night.  After about three months, I was able to go out to dinner and enjoy a meal with friends.  My symptoms gradually got better – on an “up-and-down” as opposed to a linear timeline – but definitely better!  I started tapering down on the antibiotics, and was completely off by December 1, 2003.  It had been about 15 months since my symptoms first started.

Tapering off the Meds

I had tapered off the antibiotics, along with the antifungals, over a period of approximately two months.  I had stopped needing to use Vicodin for pain, and beginning around January 2004 I gradually tapered off the Neurontin.  The last drug I came off was the antidepressant I had decided to take to help me get through the healing process.  I had been on a very low dose of Lexapro (after trying numerous others), and the Lexapro really helped with my outlook and attitude, which I believe is important when recovering from any illness.  I was completely off all medications by June 2004.

Returning to Work and to Life

As I was tapering off my meds, it took some months for my symptoms to be completely gone.  I still had occasional symptoms – mostly frequency and urgency – for three or four months after discontinuing the antibiotics.  But my symptoms gradually decreased until they were few and far between.  I was still very careful what I ate and drank.  In fact even now, three years later, I still stay away from anything acidic, anything citrus, anything spicy, and anything made with tomato sauce.

In March 2004, after not working for almost a year, I decided I was ready (and needed) to go back to work.  By that time there wasn’t a position available at the company where I had been working when I got sick, so I updated my resume and started to “pound the pavement.”  I went to a job-related seminar one day and ran into an old boss.  As it turned out, I was looking for a job, and he had an open position.  Talk about the right place at the right time!  So in April 2004 I returned to work.

Thank Yous and … I Feel So Blessed

I am [finally!!!] writing “My Story.”  It is May 2007.  It has been about three years since I recovered from my IC.  Every night I pray with my mother, and we thank God for allowing me to be well again and to have my life back.  In addition, I am so thankful to the team of medical professionals that worked with me, and to my family members and friends who supported me.  And a very special “thank you” to the ICU of Texas (the support group in Houston) for providing me not only with a support network, but was also a valuable source of educational information regarding IC treatments and resources within the Houston medical community.

Closing Thoughts

I am an IC patient.  I am not a doctor.  I can only tell you in “My Story” what happened to me, and what treatments worked for me.  That is not to say that what I did would be the best treatment plan for everyone or anyone else.  There are IC treatments out there now that didn’t even exist 4-1/2 years ago when I was first diagnosed with IC.  But I will offer some thoughts and suggestions to other IC patients (not be construed as recommendations or advice), as follows:

1. Get out of pain!  If you are in pain and if you can’t sleep, then you can’t think.  You need to be able to think clearly in order to make decisions about what you need to do to get well.

2. Find the right doctor(s).  You need to find a doctor that is knowledgeable about IC, that is open-minded, and that listens to what you say.  You and your doctor should develop and monitor your treatment plan together.  If you have more than one doctor, they need to be willing to talk to each other and work together.

3. Be your own advocate.  Since there are still many questions about IC, you owe it to yourself to learn as much about the condition as you can and to use this knowledge to help plot your course to recovery.  Chances are you may learn things that your doctor(s) may not know!

4. Maintain a journal.  It is very helpful to maintain a journal, diary, or log of some sort to track your medications, your symptoms, and your progress.  This will be helpful not only to you and your doctor during your recovery, but can also assist you in helping others in the future.

5. Establish a support network.  Whether it is family, friends, other IC patients, an “organized” support group, your physicians, or a combination thereof, establish a support network to help you get through this.  It is a very tough condition to deal with, both physically and mentally.  The people who really care about you may not understand the condition, but they do want to help you.  Let them!

6. Be patient.  Dealing with IC is hard, especially when you want to or need to keep working, or when you have a family to care for, or when you don’t think you can stand the pain or go without sleep any more.  However, my personal experience and that of most of the people I have talked with is that the recovery process takes time and has its “ups and downs.”  Over time, the “ups” become more frequent than the “downs” until, eventually, you are well again!

7. DON’T GIVE UP!  When I was first diagnosed, I was told over and over again that very few people with IC ever get well; that they just learn to manage their condition.  Basically, I was told that the disease is chronic and that while you may go into remission, you are never cured.  I have been symptom-free from IC for over 3 years now.  Although it may be just a matter of semantics, I prefer to think of myself as healed, rather than as in remission.  If my IC ever returns, I know that I’ve gotten well once before and I can do it again.  So don’t ever give up hope … YOU CAN GET WELL!!!

PART II – WRITTEN IN NOVEMBER, 2019

The Unexpected and Unthinkable – My Bladder Symptoms Returned

This is an update to my IC story written in May 2007.  Sadly, my bladder symptoms returned in August 2018 after almost 15 years in complete and total remission.  When I say “complete and total remission,” that means zero bladder symptoms, zero dietary restrictions, and zero limitations on activities.  In other words, I was living a totally normal … and very happy … life!  I could sleep for 8 or 10 or even 12 hours without getting up to pee (or maybe getting up once)!  In fact, I peed less than all my friends.  I was able to travel, to play tennis, to hike, and to do all the other activities I enjoyed.  I was able to drink coffee and alcohol every day … but I still stayed away from really spicy and citrus foods because I had grown accustomed to that after many years of avoiding these foods.

The Day It All Began … Again

As was the case in September 2003 when I had IC symptoms “the first time,” I remember the exact date and what I was doing when my IC – now called Bladder Pain Syndrome or “BPS” – began again.  I will use the terms IC and BPS interchangeably herein.  My sister was visiting from Ohio and on August 17, 2018, I began having bladder symptoms.  I can tell the difference between a “regular” UTI that will respond quickly to a relatively short course of antibiotics, versus a deeper infection that cannot be so easily treated.  I knew this was not a “regular” UTI.  As discussed below, when my bladder symptoms returned in August 2018, there were a lot of circumstances that I believe combined to create a “perfect storm” scenario that led to the return of my bladder symptoms.

Microscopic Colitis

It started in 2010 when I was diagnosed with a condition called microscopic colitis (“MC”).  Until 2008, I had suffered my entire adult life with constipation.  So I was surprised in 2008 when I started having bouts of diarrhea.  It got bad enough in 2010 that I went to my GI doctor to have it checked.  My GI doctor did a colonoscopy and diagnosed me with MC.  For MC patients, the colon looks normal but biopsies show that there is inflammation and / or a thickened collagen band in the colon walls.  So my GI doctor put me on Asacol.  The Asacol made me pretty sick, so I stopped it and started using OTC Imodium.  From 2010 to 2013, my MC was totally controlled with one Imodium per day.  In 2014 and 2015 I had to increase my Imodium to two per day.  During these five years, I did not need to restrict my diet or activities at all.  Then in 2015, the Imodium no longer worked, and I was having watery liquid diarrhea (i.e., no formed stools) many times per day and when I had to go, I HAD to go NOW!!!  It was awful, but my bladder was not impacted at this point.

By 2015, the GI doctor who had diagnosed my MC had retired, so I went to a new GI.  She started me on a steroid called Budesonide.  I really did not want to take a steroid every day, but this steroid is purportedly not systemic and supposedly only acts inside the colon (I would debate that … although I think it is less systemic than, say, Prednisone).  Fortunately, the Budesonide was effective for me, and within a matter of days I was having normal bowel movements.  Some people diagnosed with MC only need to take Budesonide for two months and then wean off and are in remission.  Unfortunately, I was not one of those people.  After two months I weaned off the Budesonide, and relapsed within weeks thereafter and needed to start taking the Budesonide again.  Fortunately, as before, the Budesonide worked quickly and my life went on.  During this time, my bladder was as calm as could be.  In fact … what bladder?

My GI doctor told me that I had no dietary restrictions with the MC (in hindsight, I’m not sure that was good advice), so I rocked and rolled and enjoyed my life.  I continued working, continued traveling, continued playing tennis, and continued to eat and drink whatever I wanted … including coffee and alcohol.  I retired in June 2017 and really enjoyed my first six months of retirement.  Then in January 2018 I decided to try to wean off the Budesonide again.  My doctor weaned me off over the course of a month.  Within a month after that, my symptoms had returned.  Strike 2!  I had planned a tennis trip to Italy in May 2019.  I took that trip, but it was really challenging with the constant watery diarrhea.  I had to skip all the morning tennis (playing), because that was when my diarrhea was the worst.  And the long flights back and forth to Italy were really difficult.  But I am glad I went, and I enjoyed watching the Italian Open.  And I did eat the Italian food and drank the Italian wine with no bladder issues.

When I got back from Italy, I decided to work with a nutritionist to get my MC into remission with diet.  I had read that other MC patients were successful with this, and my nutritionist said that she had helped others heal from MC.  My nutritionist relied on the MRT – LEAP protocol, and after conducting the necessary tests, she placed me on a very restricted diet.  I began the diet on June 16, 2018.  Over the next 6 weeks, I lost 25 pounds.  Fortunately (I wouldn’t have said fortunately before this all started), I was carrying enough extra weight that I could afford to lose 25 pounds.  However, the diet the nutritionist had me following did absolutely NOTHING to help with my non-stop watery diarrhea.  Still, at this point, my bladder was fine.  After about 2 months I realized that the diet was not going to alleviate my MC, and went to my GI doctor and asked to re-start the Budesonide.  I re-started the Budesonide in early August and, fortunately, it began to help … again … within a matter of days.

My System Was Weakened

The whole experience with my MC had really drained and weakened me.  Plus I was totally depressed about dealing with the MC and the probability that I would need to be on steroids the rest of my life.  My GP suggested I try the low FODMAP diet, so I was doing that and continued losing weight.  I became very anxious, so asked my GP to recommend a psychiatrist (I had been seeing a psychologist, but felt perhaps temporary medication might help with my depression and anxiety).  The psychiatrist prescribed Wellbutrin to take in addition to my Lexapro (I have been on Lexapro most of the time since my husband died in 2001).  I took the first Wellbutrin pill on August 17, 2018.  As indicated above, my sister was visiting from Ohio and I told her the pill made me feel really strange.  Later in the day, I told her I was getting bladder symptoms.  It really scared me, because it did not feel like a “regular” UTI.  The next day I took another Wellbutrin pill, and the bladder symptoms got worse.  So I stopped the Wellbutrin.  As my sister was leaving to return to Cleveland, she said she prayed that my IC was not coming back because she knew what that would mean.  Sadly, that is what happened!  I went to my GP for a urinalysis which – no surprise! - came back negative.  But my bladder symptoms were still there.  This was not a “regular” UTI!

Things Are Different Now Than In 2003

Dealing with BPS in 2018 is very different than it was in 2003.  Some of the differences are listed below.

First, the American Urology Association (“AUA”) issued guidelines in 2011 (revised in 2014) for the treatment of IC.  The AUA guidelines set forth a six-step protocol to be followed in treating IC (in my opinion, some of the recommended treatments are barbaric).  The guidelines also list protocols NOT to follow, the first one on the list being long-term antibiotics.  Therefore, doctors are reluctant to prescribe long-term antibiotics.  This is especially true because the overuse of antibiotics has led to many antibiotic resistant infections.  So there is currently a trend to avoid over-prescribing antibiotics.

Second, in 2016 the CDC issued guidelines for prescribing opioids for chronic pain.  As a result of these guidelines, the majority of doctors are now reluctant to prescribe opiate medication to their chronic pain patients.

Third, there are now many social media forums (Facebook, YouTube, Instagram) where BPS patients can connect and find out more about their conditions and how to treat them.  This is a positive thing, since this ability to “connect” did not exist in 2003 to the extent it does now.

Fourth, there are now new testing methods that are superior to the dipstick and agar plate culturing that doctors have relied upon in the past to determine the presence of a UTI.  The new methods involve PCR and DNA testing, and are being increasingly relied upon by doctors to identify and treat difficult infections.

Fifth, and this is specific to me, my treatment is going to be challenging.  I am now 15 months into my bladder symptoms.  But at the same time my bladder symptoms started, my vagina went completely out of whack.  I think my body was just so weakened and susceptible, that bacteria just found their opportunity to wreak havoc.  I was 68 at the time and had been post-menopausal for 10 years.  I had never taken any estrogen or HRT treatments, and had never had any issues.  But everything changed in August 2018.  I went to three doctors (two urologists and one urogynecologist) before finding a doctor (the fourth one I saw) who would even examine me.  He diagnosed me with advanced vaginal atrophy, and told me I had zero good bacteria in my vagina.  So his first focus was to “fix” my vaginal issues.  At that point in time, I only had pain … I did not have any frequency.  When all this was going on, my 90-year-old mother began to decline rapidly.  My sister told me if I wanted to see her again before she died, I needed to go to Ohio ASAP.  So in mid-September I flew to Ohio.  It was a REALLY hard trip, but I did get to visit with my Mom one last time.  She died two weeks later, and I flew to Ohio again for the funeral … another REALLY hard trip (physically and emotionally).  In the meantime, we continued to try to get my vagina straightened out.  I was shoving things up my vagina every night.  Steroid cream at first (Clobetasol), then Boric Acid capsules, then Amphotericin B vaginal suppositories.  I took numerous rounds of oral antibiotics.  Then began using Estradiol cream vaginally.  Between the antibiotics and the Estradiol cream, I got an overgrowth of Candida glabrata and have been trying to get rid of it ever since.  This urogyn basically gave up on me (well … at least he tried?), and referred me to a vaginal specialist.  I got an appointment for six months later.  I could not wait that long to be treated, so I went to see another GYN who I could get in to see sooner.  She tested and confirmed I still have Candida glabrata, so we treated first with Amphotericin B for 2 weeks (did not work) and I am now using Boric Acid suppositories for 2 weeks.

Treating My Bladder Issues

I have been taking Gabapentin for about 1-1/2 months.  This time I worked up to 1500 mg gradually (rather than immediately starting with 1200 mg as in 2003), thereby avoiding the “lala land” period I went through in 2003.  I am just starting to notice that the Gabapentin beginning to help with my pain.

I also want to take long-term antibiotics because, while I believe the Gabapentin helps with my pain, I believe long-term antibiotics are necessary to heal the bladder.  But taking long-term antibiotics will be a challenge for me this time around for the following reasons:

(1)         I am older now (69 vs 53), and my body is not as resilient as it was 15 years ago.

(2)         I have MC and am on daily steroids.  Not only does this weaken my immune system, but oral antibiotics will be really tough on my colon.

(3)         I am still having vaginal issues and cannot get rid of my Candida glabrata infection.  Taking long-term antibiotics will almost always cause yeast, no matter what you do to try to prevent it (at least, that’s my opinion).  Starting out of the gate with a yeast infection is not a good thing.

(4)         Long-term antibiotics can cause clostridium difficile (“CDiff”), which can be fatal.  I have had CDiff in the past (before 2003) and NEVER want to go through that again.

So I would be lying if I said that I am not concerned – well, downright scared – to take long-term antibiotics again.

I am seeing a doctor later this month who does believe that long-term antibiotics are required to heal the type of bladder infection I think I have.  I am hoping and praying that my body will tolerate the long-term antibiotics and that my bladder can once again be healed and I can begin again to live a happy, meaningful, and fulfilling life.  The next time I update “My Story,” I hope that is the news I will report.