Vitamin and Mineral Supplementation

Thanks to my friends, family and fellow IC sufferers that continue to ask about my progress after 3 years. I am still persevering with vigor in my quest to try to find new treatments that may help cure (dare I say it) my IC. I am not currently taking any prescription medications anymore. Throughout my IC history, I have tried several different things, all to no avail. I seemed to suffer significant side effects from almost everything I tried. The may treatment that has continued to help me is the Urgent PC. To date, my nighttime urinary frequency has decreased to an average of 2 times/night. I feel as though this is one small victory for me in my fight against IC.

Feeling as though my urogynecologist had little more to offer me, I turned to a new doctor yet again. This particular doctor, Dr. F. , specializes in preventative and diagnostic medicine. He measures things such as Vitamin D and magnesium levels in the body as well as several other vitamins and minerals important in maintaining healthy cells, tissues and nerves in the body. Although many physicians do not feel as though they sufficiently understand the function of many of these important nutrients, Dr. F. believes deficiencies in vital vitamins and minerals can contribute to the disease processes of the body. Since Dr. F. had expressed a perspective that I had not yet encountered, I decided I would give his treatment ideas a try. A blood test revealed a severe vitamin D deficiency, a deficiency that is often present in autoimmune diseases, and a magnesium deficiency, a mineral that among other things helps to regulate muscle contractions. The treatment for these deficiencies is with supplementation. I have been fortunate to have found a few supplements that do not irritate the bladder. I currently take vitamin A, vitamin D and iodine orally. Since I was not tolerating an oral dose of magnesium or any of the B vitamins well, Dr. F. suggested trying a vitamin IV bag weekly for the next 4 weeks. I have had 3 IV's in the doctor's office so far. The IV takes about 45 minutes during which I usually bring a magazine to read. I am noticing an increase in energy during the day and an improvement in my sleep. However, I have not yet noticed a decrease in day time urinary frequency or decrease in food sensitivities. Dr. F. believes that it will take time for the body to begin to heal itself and that I need to continue to be patient. During my last visit he commented that he has other ideas to try if I don't seem to make any improvement from the IV bags. Although I wish these treatments would produce some quicker results, I am grateful for finding a doctor that is willing to think beyond just the bladder and really try to assess the whole body. As I approach the end of my third year of chronic pelvic pain in the form of IC, I try to remain hopeful that 2009 can be a year of healing for my body. Best Wishes to everyone in the new year!

Urgent PC/PTNS Update

After finishing the series of bladder instillations without much improvement, I decided to try the Urgent PC to help with the overactive bladder part of IC. I was fortunate to get approval from my insurance company for this treatment since it is relatively new. A needle electrode is inserted into the posterior tibial nerve located a few inches above the medial malleolus (the bony point on the inside of your ankle). The electrode is then hooked up to a small box that provides an electrical current into the nerve for 30 minutes at a time. While the posterior tibial nerve is located near the ankle, it originates from the lumbar-sacral nerves (L4-S3) which control the bladder detrusor and pelvic floor. Treatments are given once a week for 12 weeks, then tapered to every other week for 6 weeks, then once a month and eventually, one every couple of months. According to the Urgent PC website, most patients begin to feel some sort of relief around week 6 with the most common improvement being made in nighttime urinary frequency. The treatments are not painful. In fact, I would often bring a magazine to read during my treatment session. FINALLY, I have a bit of good news!!! I have finished the weekly series of 1 a week for 12 weeks and am now tapering down to 1 treatment every other week. Around week 4, I noticed that my nighttime frequency was decreasing to around 2 times each night. After my eleventh treatment, a typical night for me consisted of getting up 1-2 times. It's a drastic decrease from my previous history of getting up 4, 5, 6, 7 or more times each night. Although the Urgent PC has not done much to improve my daytime schedule, I am still pleased with the results. I am overall in a better mood because of my ability to sleep. However, I have noticed that the Urgent PC does not provide me with pain relief. If my bladder becomes more irritated, then I may still be up several times a night, so I really try hard to stick to my diet and eat the foods I know I can tolerate. This treatment is definitely worth trying, provided you can get it reimbursed from your insurance company. I went the route of having it pre-approved before having the procedure, since the cost of the treatments is rather expensive and considered "experimental" by many insurance companies. I hope this procedure can be more easily available to patients. For me, it's been a blessing.

Bladder instillations, Roller Coaster Rides and Bleep Blips

I know I've taken a LONG time to update this...mainly because not much has changed. I recently finished a series of 12 bladder instillations. Sadly, I received little to no significant benefits from them. Some people do really well with the instillations. I only received very short term relief, one to two days. Then, all the symptoms would return again. It is a bit discouraging. I just keep praying (and PRAYING and PRAYING and PRAYING) that there would be something that would help me.

My husband and I were recently watching a show about the physiological effects of thrill rides such as roller coasters. Thinking I might like to take up the pastime of thrill-rider enthusiast, I decided to brave the crowds, long lines and theme-park prepared foods with my husband and go to Six Flags Great America last week. I know, not really the best choice of activities for people with IC. In fact, this type of activity can be impossible for many people. I prepared myself for the adventure by telling myself I was going to take my time and use the bathroom before extremely long line. I knew where all the restrooms were located and comforted myself by knowing I could go directly to it when I got off the ride. I also had a bladder instillation the day before which help to slightly decrease my frequency. I was set and ready to go!

We started off the day with a warm-up rollercoaster, a "family" rollercoaster as it is described. No problem there. My bladder felt fine. My stomach felt fine. Off to ride number two...The Orbit. The description for this ride said, "Come get your world turned upside-down on The Orbit, a flat, spinning ride that rises up just to flip you over." Sounds intriguing, doesn't it? My 6 foot four inch husband and I were crammed into a small cage-like device, he in the back, and me, with my knees bent nearly to my neck, in the front. "Can't you move your hips in a little more? I can't fit my legs in this thing." He asked. Wiggling and wiggling around until we were almost stuck, we somehow managed to jam both of ourselves into this square box of a ride. The ride began to spin...and Spin...and SPIN...endlessly until I began to feel both bored and very sick! I couldn't get off this dumb ride fast enough. Weak-kneed and dizzy, I manage to dislodge myself from the ride saying, "I think I am gonna throw up! I think I gonna throw up!" Searching frantically for a chair in some form, I took a seat on the curb. For the next hour and half, I proceeded to be both dizzy and nauseous every time I moved or turned my head. At one point, I willing stumbled my way to the first aid station and asked if they had a cot I could rest on for a while. My husband later told me my eyes were dilated. Sadly, we decided we were going to have to leave the park, not because of my bladder, but because of the stupid spinning ride that caused some strange episode of vertigo.

One our way out the park my husband said, "I want to get a funnel cake before we go. I feel like if I at least get a funnel cake, our trip won't be a total waste." Unable to eat the funnel cake myself, I wondered into a candy shop to see if there might be something to make my theme park experience worth it. I spotted my favorite candies, Bleep Blips (a cross between Smartees, Sweattarts and shaped like a flying saucer ) and in small quantities I can actually eat them. Not wanting to irritate my bladder, I decided I would purchase just two Bleep Blips. My husband suggested that I get a big scoop of the candies as he would share them with me. Vowing to myself that I would only eat two, I bought a bag full.

I walked out of the store and popped the first Bleep Blip into my mouth as we headed toward the exit. Within minutes of savoring my favorite candy, my head began to clear, my dizziness subsided and my nausea vanished. These were miracle Bleep Blips! Suddenly, I was feeling...FINE I was feeling so good in fact, that we were able to ride some of the big rollercoasters and remain at the park until closing time. Anytime I was feeling sick to my stomach, I just popped a Bleep Blip and away we went (I actually ate about 10 of them). We now have plans to go back later in the summer to ride the rest of the rollercoasters that I missed, and of course, armed with a pocket full of Bleep Blips to tame my ails.

Bladder instillations continued

I haven't posted for awhile because not much has changed. I am still having weekly bladder instillations. I have had 8 in total now. Honestly, I am not really noticing much of a difference. Some days I feel like things are getting a little bit better and some days I really can't tell. My doctor told me it could take several weeks to have any benefits if I am not taking Elmiron along with the instillations. Although I dread being catheterized, I will continue for several more weeks with the hopes of achieving some positive results from all of this. The nurse at my doctor's office told me it seems as though I have a pretty severe case of IC since it doesn't really seem to be responding to the instillations. I try not to really get caught up in the severity of it though. I can still work and do some normal activities so I am thankful. It is what it is and I just try to take one day at a time and anticipate that things will improve. Today, my husband and I are headed off to a Chicago Cubs game, so that should be fun. I do get a little bit nervous but I usually have to go to the bathroom several times...should still be fun though. I need to have a little fun now and then.

Interstitial Cystitis and Relaxation

I have recently been realizing that I need to focus on some relaxation techniques to retrain my pelvic floor. I am constantly holding my muscles in a state of tension and I believe this is one of the primary factors involved in causing my bladder to spasm. This is a common problem among IC sufferes. I've known this information for a long time, I just didn't "get it" until now. I realize that increased tension can result in decreased blood flow and nerve conduction to the affected area. I believe that if I can learn to decrease tension, I may be able to improve my body's ability to begin to heal. Let me tell you, learning to "relax" is NOT easy. The feeling is so foreign to my body. The minute I let the pelvic floor relax, I want to tense it again. Tension feels normal, and relaxation feels oh so abnormal. With practice, I believe I can begin to make relaxation feel normal.

I am still doing the bladder instillations. I went to the doctor last week and he recommended that because I am not really feeling any relief, I should continue for another 6 weeks. Lucky me. There are an infinite number of things I would rather be doing than being cathaterized on a weekly basis. I decided I needed to take a week off this week. Next week will begin my second series of six more instillations. Hopefully soon I will begin to feel some changes.

My IC Story

I am a little bit behind in my posting but New Dawn Pilates received a rave review from Molly Miller PT (consulting physical therapist for the Interstitial Cystitis Association). It's wonderful to have her support for this first project! If you want to see it, check out her website at:

www.roadtoslainte.blogspot.com


Tom and I are overjoyed to have such a positive review of the DVD.

New Dawn Pilates website is up and running!!!

The New Dawn Pilates website is FINALLY up and running!! Tom and I are very excited about this. The website will provide a forum for people struggling with pelvic pain disorders and exercise as well as allow people to purchase the DVD from us. The content is not 100% complete yet. We will be adding additional info on pelvic pain disorders, but this does not in any way affect the ability to use the website. Again, we are super happy that the official website is finished!

Bladder instillations and the Discovery of Tribulus

Since I wrote the last post, I have had three more bladder instillations...yes with the catheters. After my third one, I started experiencing increased bladder pain. I called a friend who has had IC for a number of years and asked her about the increased pain. She told me that when she first started getting bladder instillations several years ago, she would have to go home and sit on an ice bag because it bothered her so much. She told me that the increased symptoms should subside in a day or so. Relieved, I just waited out the symptoms and sure enough, by the next day things had calmed down. All in all though, I have not really had any remarkable breakthrough in my symptoms yet with the bladder instillations. According to some research I found on the internet, I may have another 6 weeks or so before I am really able to tell if anything changed. I am praying something improves! I did however find an AMAZING supplement that has helped me when I feel like I have a UTI. It is called tribulus and the company who makes it is called Standard Process. Originally, tribulus was marketed for impotence...probably not going to help ME much. However, recent research suggests that tribulus has little or no effect on impotence. Tribulus did prove to have an effect on bacteria of the urinary tract. In fact, it inhibited the growth of ALL infective bacteria of the urinary tract that were tested. I was nervous about trying this supplement because so many things (food, medication, supplements etc,) irritate my bladder. After a few days of taking this supplement, any symptoms of an infection I might have had went away! I couldn't be happier about the possibility of finding something that will take care of an infection without the use of antibiotics! I don't know if this product will be well tolerated by all IC patient's, but it certainly has been by me. Thank God! By the way, Thanks friends, family and strangers that check up on me.

Bladder Instillation by Cathater

Well, so far my UTI thing seems to have subsided. Thank God! It's been going on for months and months! I've been trying to decide for quite some time now what other treatment I want to try. I really feel like I am much more open to doing whatever I need to do to feel better. Although I desperately wanted to feel better before, I would never even consider the possibility of medication, maybe some sort of phobia or something of mine. Anyway, I came across a recent forum where a girl had developed IC at the age of 16. She stated that after some careful "thought and prayer" amongst her and her family, they decided that doing the bladder instillations would be the appropriate course of treatment for her. She is now 21 years old and doing quite well. Once I read her article, it was as if I too felt like I could prayerfully consider the idea of the bladder instillations. I decided that this also would be the right course of treatment for me to take. I had my first instillation by cathater last Tuesday, the 18th. The cocktail that I am currently using is a blend of heparin, lidocaine, saline and sodium bicarbonate. It is said that heparin has a similar composition as the mucosal lining of the bladder. The idea is that by putting heparin directly into the bladder, it encourages the formation of a new mucosal lining which is thought to be missing or damaged in IC patients. The formation of a new mucosal lining in the bladder reduces the amount of irritants That come in contact with it, thereby reducing pain. Sodium Bicarbonate (fancy term for sterile baking soda) is added to alkalize the mixture increasing it's permeability into the bladder wall. Finally, Lidocaine is a numbing agent decreasing sensitivity within the bladder. Treatments are given 1 a week for 6 weeks, then 1 a week for a period of time and eventually going into a maintance phase. I will not know if this has helped me or not until about week 10. I am really hoping it does. I would really like to take a vacation somewhere this summer. It's been a long time since I've been able to go anywhere so I am really wishing there will be some break through for me soon.

My New Plan of Attack

So I am finally at my wits end with these UTI-like symtoms I have been experiencing for several months now. It comes on strong (most of the time out of nowhere), improves with antibiotics and then comes back again. Lately, I've been doing ALOT of research on UTI's and I have found some good info on the use of probiotics for both treatment and prevention of infections. I am using probiotics from a company called "Custom Probiotics" in California. It comes in a powder form and does not have any additives. It has taken many months to find something my bladder could tolerate. Since IC patients are not able to drink the normally recommended cranberry juice, I am using blueberry juice also. So far, it is not bothering my bladder. Recommendations on other health websites are to drink two 8-ounce glasses of blueberry juice daily to prevent the adherence of bacteria to the bladder wall as well as taking the probiotics twice daily. I feel like a broken record always writing about this never-ending infection, but that's the real life struggles of someone living with IC. Let's hope this helps...

The Chronic Nature of IC

The biggest "beef" I have with IC is this...one day I feel not too bad. The sun is shining and I feel hopeful. I may even feel like a day will come soon when this will all be over. Then, out of nowhere, comes weeks and weeks of inexplicable pain and burning inside. I can't relate it to diet, hormones, nothing! That is what is so frustrating with this condition. The bladder seems to have a mind of it's own and there's not much that can be done about it. What is this mysterious conditions that attacks the bladder and takes on a life of it's own? Hopefully, someday there will be some answers. I have begun to see a new doctor. The way I look at it, I am the one interviewing the doctors for the job of treating me. If I am not happy, I am going to find another one. Patient's with IC and other pelvic pain disorders MUST find a doctor they can build some sort of relationship with. Otherwise, they will constantly end up frustrated and feeling like they have no where to turn. Take it from me, even though I am in the health profession I often times feel like I am not being heard by my doctor.
Maybe the new doctor I am seeing will be helpful. If not, it's on to the next. Continued thanks to the friends and family who actually read this blog to check up on me! I pray some better days are ahead.

The birth of New Dawn Pilates...coming soon!

Well, I am still going through the whole UTI/UTI symptoms thing. It's frustrating because the only time it seems to feel better is when I am on an antibiotic. I feel now though that I am pigeon-holed into everyone thinking this is an "IC flare-up." This could be something different. Anyway, I made an appointment with a new doctor at Rush University Medical Center. They have a specific program called the Center for Abdominal and Pelvic Health. I am going to place a lot of emphasis on the fact that this whole thing started after a stupid surgery and that I feel like I keep getting UTI's. Hopefully, this doctor will have some good ideas. On a good note...Tom and I just finished our first DVD entitled "New Dawn Pilates-a pilates inspired workout adapted for people with pelvic pain." We are awaiting a response from the owner for the IC Network to see if she is interested in carrying the DVD. Keep your fingers crossed. We are really excited about this. This is the first of what I hope is many DVDs. From all those who have seen it, we have gotten good reviews.

It's back...

Sadly, this thing that keeps happening to me that feels like a UTI is back again. It feels better when I am taking an antibiotic and worse when I stop. All the tests come back negative but for some reason, continue to respond. I am going back to my physical therapist today to see if she can help the situation any. I have decided that over the next few months I must alter my work schedule. I am really just sort of struggling along right now not getting any better. In fact, my symptoms might be worsening. I decided to seriously think about moving to minnesota and staying with my parents. That is a decision I will hopefully make in the next month or so. I just don't see what other options I have left...

Go Levaquin!!

Well Levaquin seems to have more or less cleared up the problem. I still have 3 more days of antibiotics left, but so far, so good. Then it's back to figuring out a long-term plan of treatment...

A little bit better

Well, I survivied yesterday and am doing a little bit better today. I was able to get into my doctor for a "sterile" urine test. That is actually where they cathertize you to take the sample directly from the bladder. Loads of fun... Anyway, I am awaiting the results but they were kind enough to re-write a prescription for Levaquin. Hopefully, this will clear things up.

Up All Night

Ever since I wrote the last postinig, "A Glimmer of Hope," I have been fighting what feels like a constant urinary tract infection. It's been off and on...now it's on again. I have such a hard, deep ache in the pelvis. It aches so bad that even my legs hurt. I have to urinate constantly. I just missed work two weeks ago for the same symptoms. After a course of Levaquin, if felt better...for a short time anyway. Unfortunately, I am not in a position to miss work again tomorrow. I have such a busy day but I will have to just suffer through it. It's 4am right now and I have been up all night long. Normally, I still sleep fairly well even with IC, but obviously not tonight. I will call my doctor in the morning and beg him for more antibiotics. I can't keep going through this. This is miserable! At least I will be working in an area of the city where there are lots of places to make a rest stop. I keep trying to be positive...but this really frickin' sucks!

A Glimmer of Hope

Just a note to all who actually check up on me through this blog...I have had about a week of actually feeling pretty good! I usually just write when I am miserable, but I also want to update when I am doing a little bit better. Being the eternal optimist that I am, I am hoping this is a turning point and that some real healing has begun. Time will tell, but for now, I have a smile on my face...

Looking forward to 2008...

HAPPY NEW YEAR! I always get excited about the thought of a new year. I am the type of person that actually likes to make New Year's resolutions and stick to them. There's something about the change from one year to another in the blink of an eye that always makes me feel excited something unexpected is about to happen, something wonderful! I've struggled with IC for 2 years and every year I feel that same way as I do right now-hopeful. Although I have had some really rough times, I do pray that 2008 will bring some rebuilding and renewal of my mind, body and spirit. I also hope that some new medical advances will be made in the treatment of the mystery that is IC. As for my current medical treatment, I am continuing to see a pelvic floor physical therapist in an attempt to retrain my pelvic floor muscles. Currently, I am not taking any medications except for the occassional oxybuturin when the frequency is out of control. I have an appointment next week with my trusted internal medicine doctor to have her review all the tests I've had done over the last year and get a second opinion. I am more or less starting from "square one." My main mission is to try to figure out how to get the repeated infectoins I experience under control. I will keep the updates coming...