Patient Stories - Leeza (IC)
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.”
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 IC. 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 the first thing I wanted to try, 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. An 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.
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 doctor of Chinese medicine that is fairly well known within the IC community and 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 irritate 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 talked 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.
I believed that the Chinese medicine may have helped with the symptoms, but would not ultimately allow me to fully recover, so I 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 also had 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 (as many IC patients who have had the “potassium test” can vouch). My bladder was 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 ate only yeast-free breads like spelt, kamut, or rice; ate only limited starches (rice, potatoes, pasta); no fruits; and nothing with sugar (including the “sugar” vegetables like beets, corn, carrots, 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, some occasional other prescription and OTC meds as needed, a restricted diet, and lots of rest), 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, citrus, or 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.
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 to 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 can hopefully 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!!!
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