Date: May 16, 2000 Interstitial Cystitis Network - Chat Log (www.ic-network.com)
Topic: Pain Management
Speaker: Dr. Alan Kwon, Director of Ambulatory & Pain Services, Vanguard Corporation of America, 211 South St., #345, Philadelphia PA 19147 (1-888-804-3320)

We would like to thank our sponsor, AKPharma (makers of Prelief), for helping to make this, and other ICN chat events, possible during the year 2000. Our corporate sponsors help us to maintain the largest free archive of IC information in the world, now accessed by patients and providers in 69 countries.

<icnmgrjill>Greetings everyone and welcome to the ICN Support Chat for May 16, 2000. I'm going to place the chat room under moderation. What this means is that only the guest speaker and myself will be able to talk publicly. You can still whisper amongst yourselves and we hope that you will whisper your questions to me so that we can take Q&A from the floor tonight.

<icnmgrjill>The necessary disclaimer: Active IC patients understand implicitly that no information gained on-line can or should be considered personal medical advice. Only your personal physician can and should give medical recommendations to you. We encourage you to review any information that you gain via the web (in this chat, in our message boards & web site) with your care provider. You can use the ICN research library to pull the latest research abstracts and articles on pain management. These may be helpful both to you and your care provider as you explore new treatment options. http://www.ic-network.com/library/

<icnmgrjill>It is my pleasure to introduce Dr. Alan Kwon. He is the Director of Ambulatory & Pain Services for the Vanguard Corporation of America. Dr. Kwon is an anesthesiologist who has run a variety of pain management programs throughout the country. When he practiced here in Northern California, IC patients found him compassionate and effective. He currently sees patients in Philadelphia & Southern New Jersey. During his presentation to our local support group (IC-Redwood Empire) back in 1996 on pain management, he introduced me to the concept of a pain management "tool kit." We expanded that idea to an "IC Tool Kit" which is the guiding principle of the ICN web site. Welcome Dr. Kwon. It is a pleasure to speak with you again!

<drkwon>Thank you very much Jill for welcoming me and inviting me onto this chat. I'm ready to get started and people can go ahead and ask questions to Jill and we'll try to get to as many as we can.

------------------------- Q&A Begins ----------------------------

<icnmgrjill>Great. Let's start out with the most important question of all. Is IC and bladder pain real? Or are we just imagining it?

<drkwon>The answer to that is YES! IC pain is real. It is an identifiable problem and it is a treatable problem.

<icnmgrjill>How is the pain of IC different to other more common types of pain?

<drkwon>Well let me first say a little bit about bladder pain instead of, say, pain from an injured finger. Internal organs, such as the bladder, liver, the GI tract respond to different mechanisms of injury and have different qualities of pain associated with them rather than injuries to our limbs.

The pain of the bladder is usually associated with distention, filling or stretching. Most of us are familiar with the dull ache of having to go to the bathroom or if we had a GI illness or lots of gas pain. Those are pains from the distention of what is called a hollow "viscus." It tends to be diffuse and may have several different qualities about it. Generally, under normal circumstances, it's relieved by reducing the pressure. So, by passing the gas, or belching, your stomach feels better. Under normal circumstances, emptying the bladder should make you feel better.

In IC, there appears to be some problem with the pain mechanism that causes it to fire with smaller distentions and even to maintain some baseline discomfort or pain when the bladder is not distended or filled.

The one interesting aspect of pain is that there will be general qualities of pain that are similar amongst most people but then each individual may interpret finer aspects of pain differently. So, a burning pain may feel like a stabbing pain to someone else The most common pain that I've encountered with IC is a constant, low grade burning ache just above the pubic bone interspersed with periods of sharp, stabbing, intense discomfort.

<icnmgrjill>Some people describe IC pain as "intractable" pain. In other words, one of its qualities is that it's very hard to ignore. It's not like having a cut where, two hours later, the pain sensation dwindles. For some IC patients, it seems that pain just goes on and on and on until they find a treatment that helps them. Do you agree that some patients experience intractable pain with their IC?

<drkwon>Yes, I agree and that leads some people to believe that there are subsets of IC patients. Some may be predisposed to more chronic pain while others may have more intermittent flares and remissions.

<icnmgrjill>How should pain be treated?

<drkwon>The first step in treating pain is, for the patient to recognize that they have pain. I know that sounds odd but many people deny their pain or they are too embarrassed to talk about it. So, for whatever reason, the patient must be able to identify and accept that they have pain, that it's okay to have pain and that it's important enough to their lives to seek care. So, the first step, is that the patient must first recognize that they have something and then seek attention for it and to begin a pathway towards treatment.

The second step is to begin to make alliances with friends, family and physicians to assist you along your pathway towards improvement or stabilization.

<icnmgrjill>What if your family doesn't believe that you are in pain?

<drkwon>I would say "Well.. does my family tell me when I'm hungry?" Or "Do they tell me when I have problems seeing?" This might be a bit sarcastic but, if you have a problem and people tell you that you don't and you've made a self-analysis and said that this is REAL.. then they are wrong. WE hope that they will begin to recognize it.

<icnmgrjill>So.. essentially, what you're saying is to have a team approach. It's pretty hard to seek care without support from others.

<drkwon>In more general terms, if you're playing basketball and had people who didn't want to be on your team. You wouldn't keep asking. You would just look for others (other friends, other family members, other physicians) to take their place. The patient is the team leader and everyone else are the supporting players though I realize that sometimes it may not feel that way.

<icnmgrjill>How should we look for doctors who treat pain? Any suggestions?

<drkwon>The best route is through referrals such as the network here or through other organizations or friends or associates who have other painful conditions that might not be IC but can point them in the direction of a clinic, physician or other health care member that will do the most important thing.. which is listen.

<icnmgrjill>Once you've found a doctor (and we'll talk more about that later) can you share with us your strategy on treating a patient in chronic pain?

<drkwon>Well, Jill, you had the opportunity of being with me in California for our original presentation regarding the tool kit and the idea of developing a tool kit still works. It's a very good plan of action. Let's break things down into smaller components.

(1) Separate your real life from your pain. You are not your pain. It does not change the essence of YOU or make you a bad person.

(2) Long term strategies. Begin to look at your life and make a list of the things that you still wish to accomplish or do. Then, on a daily basis, ask yourself, what is it that I can do to make sure that I stay on track or on my path.

(3) On the short term, what do I need to do this hour to take care of myself so that I build my hour into a day.. and I build my day into a month.. and a month into my life.

<icnmgrjill>What are some examples of long term pain management strategies?

<drkwon>In relation to IC, long-term strategies are built around how each individual is effected. As we said earlier about people with constant discomfort versus those who have periods of remission so the long-term strategies of the two groups will be different.

From a medication standpoint long-term strategies may include the use of antidepressants or spinal cord stimulation or morphine pumps. All are very long term. However, other treatments such as acupuncture, yoga, meditation and even TENS can be helpful and effective over many many years.

<icnmgrjill>Basically, our goal at the ICN has been to help patients focus on their daily lives.. what can they do a little each day that will help them improve their health and their pain. And it's not just about medication. It's about taking responsibility to learn all about pain management options. It can be as simple as practicing yoga or just changing your diet. Or it can involve a more time intensive treatment.

<drkwon>I looked at your web site and I feel that it's very well structured.. the basic tools and a sample tool kit. It's an excellent way than what I'm probably providing at this moment so I encourage you to review those materials.

<icnmgrjill>Usually, a physician will first prescribe an antidepressant as a useful way of control pain over the long term. But, the side effects can be burdensome. Any comments?

<drkwon>Antidepressants have one great property about them and should be one of the first line treatments in that it can help control a lot of the anxiety that occurs with any painful condition.

<icnmgrjill>Any difference between tricyclics and others? Have you found one type of antidepressant to be more helpful than others?

<drkwon>No. What I've found is that it may require trials of multiple different types of antidepressants or classes of antidepressants to find a combination that works for you. Just because one or two are tried and they seem not to work.. doesn't mean that you should give up. There are hundreds of antidepressants available. So it may take a little time to go through various trials to find that which works for you. Most physicians will stop after trying Elavil or wellbutrin but they should continue with others, such as Prozac, etc.

<icnmgrjill>Once antidepressants are used some patients continue to experience pain, particularly intense pain requiring an opiate (Vicodin, etc.). But, some physicians are worried about addiction. Can you share with us your insight on the concept of addiction versus tolerance?

<drkwon>Let me take tolerance first. Tolerance is usually accepted that a dosage of medication that used to be effective is no longer effective at the prior dosage level. That medication will continue to be effective if you can increase the dosage.

Addiction can be to a number of different medications other than narcotics. The best example is cocaine, which we tend to forget is a medication in which people seek out the drug for reasons other than specific syndrome or pain usually because of the side effects. Research suggests that chronic pain patients are less likely to exhibit addictive behavior when they are treated appropriately.

The subtle difference that I'm trying to make is the patient who is addicted versus the fearful patient who symptom magnifies because they are afraid of not getting their medication. Sometimes it's difficult for physicians to differentiate between the two.

<icnmgrjill>We focus on the concept of catching pain early. The earlier you catch a flare and the earlier you control the pain, the easier it is to interrupt the cycle and the less medication that it takes to control. Do you agree?

<drkwon>I agree wholeheartedly. It's important for patients to understand how to use pain medications appropriately. In some circumstances, a physician may structure a program of a long acting opiate with a short acting opiate. For example, a fentanyl patch is a classic long acting opiate or long acting delivery system. But, for breakthrough pain, a patient may also be given Morphine Sulfate which has a fast onset that can blunt rapid build up of very aggressive pain.

I think one of the most effective books on pain medications is The Pain Control Workbook. But if people can borrow a pharmacology text book called "Goodman and Gilman". I think that would be a great resource. It's a little technical but you'll get a real in-depth review of what narcotics actually are, how they are derived and where they act. It will also help them understand why they don't work sometimes and why they produce the side effects that they do and why physicians are sometimes worried about the addictive nature of medications. It is, again, a little technical, but a little persistence will help you through it.

There's also a handbook called "The Nursing Drug Handbook" that will list many of the pain medication uses. It's a comprehensive pocket brain that is easy to understand and a good resource for you.

<icnmgrjill>Any comments on neurontin (gabapentin)?

<drkwon>Neurontin is a very interesting medication. It's showing promise in a number of conditions and works on another portion of the neural transmitters for pain and the feedback that controls pain. I, personally, have seen few side effects associated with neurontin and I have not found neurontin to be addictive. But it DOES require the physician to read about the medication, how to start and withdraw a patient from it.

Another medication, Clonidine, has appeared effective. It is a blood pressure medicine. I use it with patients who have RSD (Reflex Sympathetic Dystrophy) and it has been effective in some patients with IC.

<icnmgrjill>Let's take some Q&A from the floor. Mac says.. I've had IC for 32 years. Is there any chance that pain medication will still help after so much bladder damage has occurred.

<drkwon>The answer is yes. Tissue damage or damage to the bladder does not limit the effectiveness of various medications to control pain. You just have to be assertive and try options until you find a combination that works for you.

<icnmgrjill>Teatea asks about the role of heat in treating IC. Do you feel that heat, or using a hot tub/jacuzzi, are helpful?

<drkwon>I think that it works through relaxation and relaxation has been shown to be helpful in treating all types of pain, including IC.

<icnmgrjill>One patient here says that she had her bladder removed more than ten years ago yet still experiences pain. But she's not sure where the pain is coming from.. whether its adhesions or nerve damage.

<drkwon>I think what she's shared with us is a good example of how tissue damage or even removal is not always associated with pain.. or with the loss of pain. That pain is carried in the nerve fibers and we know that information can be imprinted into the spinal cord or higher centers and continue to produce sensations, both pain or pleasure, long after the offending stimulus has stopped.

<icnmgrjill>Yes, I remember you giving a great example about this. Many years ago bladder removal was considered viable for reducing pain but we've learned since then that patients may still experience pain even after removal.

<drkwon>The most important part here is that while the removal of the bladder be necessary with some medical conditions but it may not relieve the pain. Mechanical dysfunction and pain are two different entities.

<icnmgrjill>Lesa asks "what's a good way to describe pain so that your physician understands it better.. and takes it seriously?"

<drkwon>Well, the worst thing a patient can do is to present with what we call symptom magnification. They have symptoms but they've blown them up because they are afraid that they won't get attention or proper therapy. Most physicians will initially believe patients when they present with pain and explain their symptoms. Most physicians understand that pain hurts. The best approach is to just be straightforward, honest and unabashed.

<icnmgrjill>So, would you recommend that patients bring a pain diary to their first visit?

<drkwon>No, your job is to establish a relationship with the physician first. A pain diary may be presented later or mentioned during the initial conversation that you've kept notes. But a diary can be very threatening to physicians on the first visit.

In describing your pain, try to use descriptors well. Use terms like sharp, shooting, burning, the location, and the frequency. Try to be as specific as possible. When it happens, how it happens, what's be done for it in the past.. if anything. That's the best approach.

Sometimes IC can be so disturbing that it's overwhelming to both the patient and a new physician. So, take a deep breath and focus on developing a relationship with your doctor first.

<icnmgrjill>Russ wants to know what your opinion of intrathecal infusion pumps and is there a benefit?

<drkwon>They do work but my personal preference is not to do it too soon or too early, particularly in young patients.

<icnmgrjill>Sue has a great question. She asks "What do you do when you get tired of taking medication, after a year or so?"

<drkwon>Remember that pain management is not just about taking medication. It's about using other strategies, such as perhaps a TENS unit, relaxation, acupuncture, etc. So, the more important question is "what would you do if you stopped your medication?" And how would you feel? Obviously if you feel better stopping it, then you need to stop it. Being tired of doing something is often an indicator of being tired of something else so take some time to think about that.

<icnmgrjill>Dollmaker wants to know what the usual dosage for Elavil is?

<drkwon>For painful conditions, Elavil is used from 25 to 75 mgs. When you enter the 100mg and above range, that's the antidepressant range. My best approach for pain is that all medications should be titrated starting at the lowest dosage possible.

I think it's important, for pain in general, that people know that many of the drugs that we use are not FDA approved for the method or manner in which pain physicians will use them. So, using the standard table found in the PDR or other references is not always appropriate. The FDA recognizes that drugs are used in "off label" fashion and they understand that the physician maintains a motto of "first do no harm."

<icnmgrjill>Cricket makes an excellent point. That some patients only try one medication at a time and that, for her, it wasn't until she tried a combination of medications that it started to help.

<drkwon>Fantastic. Cricket has an excellent toolkit.

<icnmgrjill>What should a patient do if a doctor just doesn't believe that they are in pain nor require anything other than aspirin, which many ICers have faced?

<drkwon>Find another physician BUT maintain your relationship with the first one, if possible so that you don't burn bridges. Consider sending them some educational materials on IC. I'm sure that the ICN and the ICA have some excellent medical journal references that you can share with your doc to justify your disease and pain level.

<icnmgrjill>Several people in the room are asking about the use of Methadone.

<drkwon>It's a good drug when used appropriately. It's one of the longest acting opioids and may have less addictive properties than the rapid acting opioids such as MSIR. However, it carries more stigma with it. For IC patients, I've used it in small dosages effectively and, generally, as a long-term strategy!

<icnmgrjill>Thank you Dr. Kwon. We've taken a lot of your time tonight.

<drkwon>I want to thank everyone for coming tonight and the ICN. You have a wonderful web site and I encourage all of you to refer the site onto their friends, family and physicians and even to people without IC because it is a wonderful source of information.


Related Websites of Interest:
ICN Patient Handbook: The IC Tool Kit -
ICN Patient Handbook: IC & Pain Management
National Institutes of Health: Chronic Pain - Hope Through Research
National Institutes of Health: Pain Medications & Opiates
SF Chronicle: Living with Chronic Pain
SF Chronicle: Newest Drugs Relieve Pain with Less Risk
The American Chronic Pain Association
American Society for Action on Chronic Pain
American Pain Society
American Medical Association
Australian Chronic Pain Association
North American Chronic Pain Association of Canada
American Society of Pain Management Nurses
InfoMIN: Chronic Pain and other Medical Resources

Books & Resources That You can Purchase:
ICN Marketplace - The ICN Patient Handbook
- $24
ICN Marketplace - Saratoga ProTENS Unit - $95
Amazon.Com - Chronic Pain Control Workbook
Amazon.Com - Full Catastrope Living

Amazon.Com - Above and Beyond: 365 Meditations for Transcending Chronic Pain and Illness


Please review the ICN Disclaimer: Active and informed IC patients understand implicitly that no patient, or web site or presentation on a web site should be considered medical advice in all cases, we strongly encourage you to discuss your medical care and treatments with a trusted medical care provider. A copy of our more extensive disclaimer can be found at: www.ic-network.com/disclaimer.html

2000, The IC Network, All rights reserved. This transcript may be reproduced for personal use only. If you do so reproduce, we ask only that you give credit to the source, the IC Network, and speakers, Dr. Stanley Jacob and Jill Osborne. For additional use, please contact the ICN at (707)538-9442.