Kicking IC to the Curb

I know, I know. It's all I've been blogging about lately, but this has been the center of Tyson and my life right now. I promise I have something different to add at the end of this blog. Grab yourself a cold one, because this is going to be long. I have A LOT to catch everyone up on.

Anyways, I just wanted to give everyone an update. Since my procedure, I've been SLOOOOOOOOOOOOOOOOOOOWWWWLY, getting slightly better each day. It's REALLY gradual. Actually, after my hydro/cysto procedure, I accumulated one extra symptom and that was a very tender and distended lower abdomen. I basically will look like I'm 3 months pregnant, and I CAN'T suck in. It's TOO TOO TOO painful. It's just too painful, period. My belly is so distended that I feel like I'm going to burst and it hurts. From what I researched and what my doctor has told me, it's part of an inflammation process. My bladder is inflammed, so fluid fills my tissues to protect my bladder; therefore, I have a distended tummy....ta dah! I think the procedure irritated my bladder a little bit more, and just like any procedure, you're going to be a little sore or out of whack for a little while. That's my theory. This is my very first procedure ever in my life.

Well, last week Tyson and I went for my follow up appointment with Dr. Corey (my new and wonderful urologist). Tyson and I were sitting in the room, and a woman walks in. My heart dropped because she definitely didn't look like any Dr. Corey. I wanted MY doctor. I guess she saw the disappointment in my face so she quickly said, "Hi, I'm Kim, and I'm Dr. Corey's nurse practitioner. He'll be right in in just a sec." I was relieved, and also relieved that she was a woman. I was thinking to myself, "A woman in this practice??? THANK GOD!!!!" She then told me that Dr. Corey looked in my bladder, and it's officially Interstitial Cystitis. She then asked me if I knew what it was. I told her I do, but I wanted a doctor's version on it. Little did she know that I have done TONS AND TONS of THOROUGH research for 2 straight months that even I could possibly diagnose someone with IC (not really, but you know what I mean) and I was sort of testing her to see how well versed she was in the disease (since it's not widely known about). So, the Nurse Practitioner went into detailed information about IC and blew me away. She mentioned everything I already knew AND even elaborated more on it. She spent a good 20-30 minutes with Tyson and I and answered ALL of our questions. She DID NOT act like she was in a rush (like all doctors do), and was even trying to make sure I didn't have any other questions. I was on cloud nine. This was too good to be true to have a doctor spend THIS much time with us. If I started crying, she was there comforting me and handing me tissues. Again, she's a woman! Thank goodness!

As I described all of my current symptoms still existing, and what new symptoms I've occurred over the past 2 months, she then said, "You're on 200mg of Elmiron twice daily, right?" I exclaimed, "Noooo....I'm only on 100mg twice daily, and my old Uro refused to up my dosage to the recommended starting dosage by the FDA (100mg 3 times daily) after I had asked him to put me on the recommended dosage." She looked puzzled, and said, "Well, since you've not had any side effects, I want you to start taking 200mg twice daily." I said, "THANK GOD! I was going to ask you if we can up it so we can kick this healing process into high gear." Not only was I happy she upped my dosage, I was also happy she upped it 100mg over the recommended starting dosage. Some people have to take 900mg. They are obviously more severe cases. I don't know how those people even live! My moderate case is excrutiating enough, and I'm not being a drama queen either! The reason why I wanted my dosage to be high is because this medicine takes up to 6 months to a year to even work.....if it works. Only about 2-5% of each pill makes it to the bladder to coat it, so the normal bladder lining cells can piece back my bladder lining that has been damaged. So much of the med gets lost in digestion. That's why I wanted to take more. She was then going to prescribe me Atarax because it is thought that IC creates histamines in the bladder, where the bladder is basically attacking itself (on accident) because it's trying to protect me. Well, thank goodness for Tyson because he mentioned how all in my pelvic region I'm experiencing debilitating pain almost to the point where I can't walk at all, and I can barely live day to day. She then said that my IC must be causing me more of a nerve issue so she prescribed me Elavil instead. What I've researched on the nerve issue is that my bladder lining is basically worn down, has holes, and is damaged. Urine is already acidic no matter what. When my bladder starts to fill with urine, the acidity of it is touching my bladder nerves because my protective bladder lining is almost non-existent. This is what is causing me so much pain in my pelvic region because all of the nerves are linked. In a normal bladder, you have a thick, protective bladder lining (GAG layer/epithelium) that blocks the acidic urine from touching your bladder nerves. She then took me off the Enablex (overactive bladder med) because I told her it has only made a dent in relieving any symptoms. Now I'm on Urelle which is a cocktail of an antispasmodic (keeping my bladder from going into spasms), something for pain, etc. etc. etc. After all of these newly prescribed meds, that leads me to the final piece of this blog......Oh..and by the way, Dr. Corey did come in to finalize any question I may have had. I barely had any because the nurse practitioner was SO incredible. He even boasted about her. Anyways, back to how the new meds are working for me.............

The first night I took my Elavil, I noticed a decrease in my pain to where my pain was more mild-moderate instead of severe. It even zonks me out so I sleep like a baby and feel really rested. I have to take this at night for this reason. It caused me to be in a fog the next day, but after a week on it, my body has adjusted. All I can say is that I usually can't wait for 7-7:30 to roll around because that's when I get to take my Elavil, and I'm feeling almost pain free. It's a non addicting drug by the way if you're worried. I inquired about Vicodin to the nurse practitioner, but she said even though that will help, it's not the best med to take care of my issue. Plus, it's an addicting drug. Thank goodness she prescribed Elavil.....mmmmm...I love me some Elavil! I think the Urelle is even working better than the Enablex, plus, it's an extra added bonus to pain management. Also, I don't know if it's the Elavil, Urelle, or me healing up from the procedure, or a combo of ALL of this, but ever since I've upped my Elmiron, I've noticed a significant difference in my symtoms, and it's only been a month since I've even started Elmiron. Even when I was on that lowest dosage, I noticed a SLIGHT SLIGHT SLIGHT difference, but not enough. I think since I was put on it one month after my symptoms had started, it has been more effective for me. For others, I think that low percentage of it working is from people who don't get diagnosed or put on it about 6 months AFTER their symptoms have started. Yes! People live like this for 6 months going from doctor to doctor until finally one diagnoses them! That's CRAZY to me for someone to live like this for 6 months until they can get diagnosed!!!! Some doctors need to be ashamed of themselves. Just because we don't look sick on the outside, doesn't mean our bodies are screaming on the inside. I will tell you the pain and discomfort is SO bad that I think, after dealing with this, I will be able to give birth without an epidural. NOT KIDDING EITHER!!!!!!! Thank goodness I was so persistent and probably the biggest pain in all of my doctor's rear ends, but, hey! I got put on the Elmiron quickly so I have a better chance of it working, and quickly too!

I am sitting here today, typing this blog after being on Elmiron for only 1 month and then all of my new meds for only a week, and I can tell you that today was the first day I felt 85% better since IC attacked me two months ago. I can only pray pray pray it just keeps getting better from here, and I don't take a nose dive.....KNOCK ON WOOD!!!!!! I forgot to mention that the Nurse Practitioner told me to have a gluten free diet for now because there's now research that says gluten irritates an IC bladder. So, not only am I on the already restricted IC diet, I also have to be gluten free which basically cuts the already complicated IC diet in half. It stinks, but I have heard and read success stories that once someone has gotten their bladder to heal up, they've been able to add more foods to their diet. I've changed mine up a tiny bit. I am now eating gluten free brown rice tortillas which are actually pretty good. I'm still eating chicken, and I've added zucchini to my diet. I've taken out potatoes because about 4 days ago, I thought I figure out that potatoes might be a problem food for me (even though it says it's IC safe on the diet). Potatoes have potassium in it, and our IC bladders are sensitive to potassium. So I've cut that and replaced it with organic brown jasmine rice which is actually delicious. I've added romain lettuce and some organic eggs. And....READ THIS.....did you know even your water can be acidic!!!!??? I JUST figured out today that I think the water I was drinking was hurting me. I switched up my water (to another IC safe water-Fiji) and that's when my difference started yesterday. I decided to give my other water I've been drinking a test trial after school today. I don't know if it was me looking for it, but I felt sort of a twinge of my symptoms start to flare, so goodbye to that water. And, they even said this water I've been drinking was safe! But, I have been told and read that the IC diet is only a guideline, and I still can still flare from eating and IC safe food. It kind of stinks. It's all a guessing game.

So this is what's happening with me right now. I think I'm improving, and I'm PRAYING that this is me improving and it will only get better from here. I'm hoping for a speedy recovery and I can return to the life I lived pre IC. I have full faith that I will. In my heart, I know I will return to the life I lived pre IC. Again, thank you EVERYONE for all of the love and support. I can only hope that I'm educating everyone about this debilitating disease since it's not widely known like cancer. Why, I don't know because MILLIONS of people have this disease. But, some are suffering silently, or doctors can't seem to diagnose them quick enough. Please continue to pray for Tyson and me. I feel that all of your prayers are working.

Overall, Tyson and I are EXTREMELY happy with Dr. Corey, and especially his nurse practitioner....WOOHOO!!!! A two man team that is treating me, and one is a woman! I'm so happy. We both walked out of there feeling SO RELIEVED, and Tyson even admitted and apologized to me for not listening to me when I told him I felt iffy about my old Urologist. Dr. Corey and his nurse practitioner Kim have been my saving grace. They make me feel SO positive that I will be an IC success story and be completely asymptomatic.