Not the Best News

Hello friends and family. I wish I could say the Sutton household is doing great, but unfortunately, this blog will contain some bad news. A couple of blogs ago, I had mentioned that there was a possibility that I had a bad urinary tract infection that left me with a "whacked out" bladder. My urologist had put me on an overactive bladder medication thinking that my bladder infection had left me with an inflammed bladder, and I needed the medicine to calm down my bladder spasms while my bladder healed. My symptoms got slightly better, but I still was not feeling normal. I still had a constant uncomfortable urge to have to go (like every hour), and I wanted to go frequently. The urges would hit me really hard (a lot of bladder pressure) and it wouldn't slowly come about like a normal person's bladder would.

Well, I went for my one month follow up this past Friday, and I had received some news that I was fearing to ever hear. I told my urologist the scoop on what symptoms I still had. After I tell him this, he sat in deep thought and he tells me that he is going to prescribe me Elmiron. When he said this word, I about broke down in tears. It's a medicine for people with Interstitial Cystitis (IC). I knew EXACTLY what this medicine was for before he told me, because, about a month ago, I had suspected I had this bladder disease due to my symptoms and I had done a lot of research on it. In the middle of all of my thoughts, he finally came out and said that this medication is prescribed for people with Interstitial Cystitis, but he never came out and told me that this is what he thinks I have. At the end of his talk, I looked at him with tears filled in my eyes and said, "So you're saying that I have Interstitial Cystitis?" He looked down at his paper, then looked up, siged, and said, "Let's just see how you do with this medication." My urologist wouldn't formally tell me, and I don't know why, and it's still so frustrating to me. So, it was like an informal diagnosis.

As I walked out of the office to make a follow up appointment that I will need to go to in 6 months, I started crying. The whole office was concerned for me,and I was embarrassed. Tyson and I got in the elevator to get back to the car, and I just hysterically broke down and cried, "Why me?" as he held me so tightly. We both feared that my condition would come to this (more so me.) Now, as you're reading this, some of you are wondering why I am crying and so frightened over this Interstitial Cystitis thing. Let me explain.

Interstitial Cystitis or Painful Bladder Syndrome (PBS) is a disease of the bladder where the bladder is chronically inflammed. There is NO known cause, and there is NO cure. It can only be treated. In people with IC, the protective mucous layering of the bladder has been damaged from inflammation (creating holes in the bladder) and any acid from urine seeps through these holes, irritating the bladder, and creating more inflammation. The body reacts by the bladder contracting and spasming (because the bladder thinks there's a foreign substance in my bladder and it's trying to get rid of it) causing a constant, strong, uncomfortable urge to go, and the need to go very frequently. Some people have bladder pain or pressure with this. I have urgency, frequency, and pressure (at times). The only way I can explain this miserable feeling is to tell you to go to the bathroom, then right when you're about to finish, stop and try to hold in that little bit of urine left in your urethra. It's uncomfortable, right? And you want to release the rest of it, right? Well, that's the way I feel ALL day EVERY day of my life. I empty my bladder completely, but I have the feeling like I didn't. It's SO VERY uncomfortable. Also, not only does it feel like that, but it also feels like you just drank a ton of water and you have to go VERY bad. I would go, and then INSTANTLY I would get strong feeling like I drank a bunch of water even after I had only drank a couple sips of water. This disease disrupts people's way of life. Because I am so extremely uncomfortable, I have trouble going places and doing things because I'm just so miserable the whole time, and I can't enjoy myself or just physically do it. It's like when you have the flu, you don't want to go out and party it up. You want to stay home and sleep.

The Elmiron coats the bladder so that it can "cover up the holes," while it gives the bladder a chance to try and heal and repair itself. I also have to remain on a special diet. There are many foods that irritate the bladder, and if I eat these foods, all I'm doing is re-irritating my bladder while it's trying to heal. Let me give you an example. You scrape your knee, and you put a bandaid over it and leave it alone so it can heal. If I were to eat the bad foods, I would basically be scrapping my knee, putting a bandaid over it, THEN taking the bandaid off in one day, and re-scraping my knee. Basically, it won't heal and just constantly be re-irritated.

I will have to be on this medication for the rest of my life, and I will have to stick to a pretty strict diet for quite a while. The really upsetting part in all of this is that I will have Interstitial Cystitis for the rest of my life (thus resulting in me taking Elmiron for the rest of my life) and Elmiron only works for 50-60% of its patients who take it, and it takes a good 3-6 months OR EVEN A YEAR for it to really work. It works better when taken for a longer period of time. So, basically, I have a 50-60% chance of this working, and I really should wait 6 months to a year to see if my symptoms subside (knowing that there's only a 50-60% chance the medicine is even doing its job.) It's all a waiting game. I can tell you that I've been dealing with my discomfort for only a month now, and I feel like death. I don't know how I'm doing to do this for another year-ish. I'd rather be put out of my misery.

So, this is why I broke down in tears so hard and cried, "Why me?" I have been completely devasted ever since I was "informally" told the bad news. I thought 2009 was going to be a GREAT year for me....get married, graduate college, get my first teaching job..........but now, everything has been washed out due to this illness and I am a puddle. I start my first day of school tomorrow, and I don't know if I'm mentally ready because of this illness. It's been really hard to make it through these days, and I fear it will affect my work performance because I'm in so much misery. This disease is both emotionally and physically taxing.

Anyways, I thought this was important to share with all of Tyson and my family and friends. All I can ask from everyone is your understanding, support, and prayers through this rough time. This is a really big deal, and it is not minor. I have been so blessed to have Tyson's constant love and support, and that's all I can ask for. I am SO extremely devasted and frightened to death. I don't want to live like this for a long period of time. Let's hope and pray that this medication I'm on will do the trick and I can feel like I have a normal bladder again.......and it won't take as long. I'm having wishful thinking, thinking that the reason it takes so long for other people to feel the effects of the medicine is because it took them a while to get diagnosed. I've been diagnosed early, so I'm trying to remain positive that this medicine will kick in pretty quick. I will try and keep everyone updated on my progress. Below are a couple of links about Interstitial Cystitis if you're interested or want to understand it more.

http://www.mayoclinic.com/health/interstitial-cystitis/DS00497

http://www.kidney.niddk.nih.gov/kudiseases/pubs/interstitialcystitis/

I apologize if this blog comes off as, "please feel sorry for me." This is not my intention. I only want to everyone on my condition so you can better understand why I feel so bad all of the time. Also, it is very therapeutic for me (especially right now) to talk about it and get it off my chest.