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| Interstitial Cystitis Facts:*One million suffer with this in the US; 90% are women. *Considered one of the greatest medical mysteries today. *The AMA has recently changed its named to Painful Bladder Syndrome due to the myriad of causes felt to exist. *It takes approximately 4 years before symptoms appear. *It is an "invisible" affliction. Patient's who appear healthy may be in constant, unremitting pain. Possible Causes of IC:
1. A defect in the bladder lining, allowing toxins to enter the bladder wall. 2. An immunologic/autoimmune response 3. An allergic reaction 4. An unidentified bacteria, fungus or virus. 5. A neurogenic inflammatory response. A Good Website for IC information:http://www.ic-network.com/handbook/
Below are pictures of my latest bladder surgery. My doctors always gives me pictures to take home with me. In order to get a true diagnosis of Interstitial Cystitis you must go under anesthesia and have a procedure done.
To the left is a four-view picture of my bladder when the scope is inserted. It looks perfectly normal.
To the right is a four-view picture of my bladder after the doctor distended the bladder, stretching it to its maximum capacity. (Cannot be tolerated awake!) These pictures should look the same as the first in a normal bladder. Obviously, this is a true diagnosis of IC when the blood vessels break and the bladder looks on fire (which is exactly how it feels too!). If you look closely you might be able to pick out the ulcers he cauterized also.
 
Pain Control Is the Heart of IC
Because there is no known cure for IC we are forced to focus on pain control. It can be discouraging when others focus on your pain instead of on you, only relating to you based on whether you are having a good day or a bad day. But if we can stop that cycle of pain we can focus more on living and less on pain. Below I am going to take you on a 15-Step Journey that shares my experience from self-pity, tears and depression to living with a more tolerant pain level and normal life. May a blessing of hope, healing, or help touch your life at one or more of these steps.
1. THE SPIRITUAL STEP: Recognize first of all that there is One who knows and understands your pain better than anyone else on earth. You are not un-spiritual because you are suffering. You are not being punished because you are in pain. God is going to use this pain for His glory if you let Him. He may never remove the pain but He will go through it with you. Let Him carry you as you struggle through daily routine and wrap His arms around you during a long lonely night when sleep will not come.
2. THE DOCTOR STEP: I went through four urologists before I won the lottery, so to speak! I consider my doctor a gift from God but my pursuit to this compassionate, skillful, knowledgeable man was somewhat rocky. Do you know how many doctors there are out there who do not even believe IC exists? I even had one doctor who wrote on my chart that he "divorced" me when I went for another opinion! Listen, girls, you are a wife/mom/grandma/sister/daughter/friend to someone and you are vital to your family. When you don't find the best care, you are not doing your best for your family. I can't count the number of times my doctor has said to me, "Your pain is real." or "I am so sorry for your pain." This is the kind of doctor you need. Do you want to hurt your family or a few doctors along the way? Think about it.
3. THE EXERCISE STEP: Water exercise seems to work the best for me. Walking or running created a sandpaper rubbing effect on the sides of my bladder with excruciating pain until my hysterectomy alleviated some of that. Exercise is known to increase the endorphins in your bloodstream and these are a natural pain reducer. Has exercise helped decrease my pain? I can't honestly say it has, but it is very good for your overall health and it's worth a try! And if you don't actually exercise, just stay busy. It is a good diversion to pain. Look for ways to serve others, doing for others keeps your mind off of yourself.
4. THE REST STEP: I have four of the most profound words to say about this, "LEARN TO SAY NO!" Again, taking care of yourself is a gift to your family. I did not have little ones at home when I was struck with this condition but for those who do you must find a solution to periods of rest and sleep for you. Pain is stressful and it tires you out. Others may not understand you when you choose rest over social activities, but that's okay, the only One who needs to understand, does.
5. THE PHYSICAL THERAPY STEP: I went to a women's clinic where physical therapists work with IC patients. My experience was not positive, I had no improvement and the treatments were very costly. But it's worth a try if you are looking for another alternative.
6. THE ACCUPUNCTURE STEP: I was a little desperate when I jumped into this one! Three hours on a table with needles being poked all over my body and I walked out with more pain than I went in with and it went on for weeks. When my outrageous bill arrived in the mail I wrote the clinic a letter explaining my unhappiness with this procedure and they wrote off my bill!
7. THE SUPPLEMENT STEP: Don't let those companies who sell powders, tablets, drinks and shakes for alternatives cash in on your pain. I'm not saying you shouldn't try them and that they won't work but I spent a lot of money on these expensive products and they didn't work. Maybe they will for you but remember this....anyone can print testimonies and promises and that doesn't make them true. You can read the labels on the bottles and boxes and cans but they are not approved by the FDA so again, it doesn't make it true. Again, don't let these companies cash in on your pain; be very careful.
8. THE DIET STEP: A couple of my IC acquaintances have discovered one or two ingredients in food that triggers their IC. They stay away from them and are relatively pain free. We should all be so lucky! Over the past years I have tried several times reducing my diet to exclusively bland foods and then added more tasty foods one at a time, but so far hot salsa or too many onions are my only possible triggers. I have heard that you can simply be allergic to your own urine. Who knows!
9. THE ALLERGY STEP: This goes along somewhat with diet but I did try a very strong antihistamine call Atarax. I took it for three months two different times but it yielded no relief from bladder pain.
10. THE BLADDER TREATMENT STEP: In the years since my diagnosis in 2001 I have tried a series of bladder washes or rescue treatments twice. Call me a pansy, but I literally had excruciating pain flare ups with these and almost always required a Demerol shot afterward. I had a doctor literally laugh in my face when I told him this. I believe these treatments can help keep my bladder healthier and I believe many women are getting relief from them but I simply cannot tolerate them and of course, they are costly.
11. THE HOSPITALIZATION STEP: The first 4 years since my diagnosis I went through a continual 3-4 month cycle of hospitalizations. The pain would escalate, I would have family members drive me to the ER about once a week for pain shots, I would lose my appetite and couldn't get any sleep. Eventually I'd end up in the hospital for a 3-4 day "refueling" with round-the-clock pain control, IV fluids and rest. I'd go home feeling revived and then the cycle would start all over again. While this "refueling" really did wonders for me both physically and emotionally; it is very costly and not a long term solution.
12. THE SURGERY STEP: I have visited the operating room six times now for a hydrodistention and Chlorpactin treatment. One of those times a doctor at KU Med Center performed it and he incorporated a laser treatment in the trigone area of the bladder. This is suspected to be the nerve center for pain signals in the bladder and by killing it you stop the pain signals. As usual, I went home and had increased pain instead of relief. But the hydrodistention/Chlorpactin treatments are a great solution for me. My doctor highly recommends this and has given me the power to call his office anytime and schedule the procedure whenever I feel ready for another one. I go under anesthesia and stay in the hospital for 24 hours. He stretches my bladder to help alleviate some of the shrinking that occurs over time, he burns out the inside walls with Chlorpactin, a chlorine bleach solution that cleans out the debris that collects from constant inflammation, and leaves room for a healthy new lining to grow, hopefully. He also cauterizes any ulcers that have formed. I get about 6-9 months of relief from this. I know its time for surgery again when my medications aren't lasting between doses and my sleep is disturbed by the constant need to urinate. My doctor feels that this is the best step I can take to promote healing and preserve the life of my bladder until science comes up with a good bladder prosthesis.
13. THE PRESCRIPTION MEDICATION STEP: There are some other relatively inexpensive prescription drugs you can try. Each one is based on a different theory for the etiology of your IC. I have tried Neurontin for nerve pain and it caused fluid retention and increased pain. I tried the one drug specifically for IC called Elmiron. It was very expensive and it caused a raging case of colitis. Amitriptyline worked well for me at bedtime; it really knocks the pain and it also knocks you out so you can sleep! But a pain specialist warned me against this drug so I threw them out. Antidepressants help me both physically and emotionally and I take them, gladly. A friend of mine gets relief from her IC with simply Detrol LA for spasms. It seems there is just no absolutes with IC, each patient is different. I also recently tried Nortriptyline, which I can say worked the best yet. My IC pain and connective tissue pain was so greatly improved I hardly knew I was sick. Unfortunately this drug would only work a few weeks and then I'd have to raise the dose, after several rounds of this I finally gave up because the higher doses began to cause side effects I was not willing to tolerate.
14. THE PAIN CLINIC STEP: If you are like me and have reached the end of your rope, exhausting all methods for pain control, then it's time to visit the pain specialist I spoke of. My urologist sent me to the Pain Clinic at KU Med Center. I sat in a room for over an hour with a very kind doctor who listened intently and sympathetically to my story, and believed me! I shed tears, and he understood. He then gently taught me about pain cycles and how pain effects us both physically and emotionally. He talked to me about narcotics. He said people who abuse them make it bad for those who don't. He taught me to stay ahead of the pain to break the cycle and that when you allow your body to stay in pain it puts stress on every organ of your body. So, how do I stay ahead of my pain?
15. THE NARCOTIC STEP: Some of you are thinking, oh no, not me! I am not going to become a drug addict. Let me tell you something about drug addicts in the words of my pain specialist. Addiction is a personality. An addict will steal, lie, cheat and kill to get his drugs. No one wants to be known as a narcotic user but you have to get past putting a label on yourself and not let others put one on you either. You have to make up your mind that you are a good person who needs help and while your body may be dependent upon the drug for pain relief, your mind is not. The pain specialist recommended my urologist be my "narcotic doctor" (you can only have one) and he prescribes my slow release MS Contin (Morphine) that I take 24 hours a day. I take fast acting Percocet for flares up and at bedtime. I have a new lease on life with these medications. I need the narcotic like the diabetic needs insulin or the heart patient needs his heart pills. I thank God for these drugs every day. The side effects do include sleepiness, which I counteract with naps, and constipation which is controlled entirely with MiraLax.
I have a good solution for pain control, at least for now. I'm more concerned about the short-term effects of living in pain then then the long-term effects of taking narcotics. It is my prayer that you will find the help you need. My heart aches for those who live with pain. If you need more information, a listening ear, or encouragement, I am here for you and I want the best for you too.
Email me at kshlad@wtciweb.com
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