A small update...

Well I was supposed to have a small bowel follow through done last monday. I did the prep the night before and made it to the hospital but I couldn't keep the barium down. The stuff was just too nasty and I was already feeling like crap from having nothing in my stomach and my insides torn out. Luckily I saw my doctor this week and told me that a cat scan would suffice to rule out a fistulous connection between my small and large bowels. I don't know why he didn't recommend this in the first place seeing as the state of my health isn't exactly great and a cat scan is much faster than a small bowel study.

At the doctors appointment he listened to my symptoms and along with another doctor agreed that they didn't think it was a fistula and more likely a mechanical problem with my stoma. The one doctor mentioned that my surgeon really wanted to see me, to which I retorted that I didn't understand why he wanted to see me seeing as how he really didn't listen to me when I complained before. I feel like this problem could have been addressed a long time ago if he had listened. Then the doctor said, "Well, sometimes surgeons don't like to admit that something they've done isn't perfect." To which my brother replied, "So basically, their ego gets in the way." The doctor laughed at this and I have to agree.

So I got the cat scan done today at Fox Chase Cancer Center which was great because I didn't have to travel all the way downtown when I've been feeling like crap. All in all from drinking the contrast to the actual scan, it took 2 hours. Not bad. The doctor who was looking at my scans said she couldn't see a fistula but then recommended that we stick a tube in my stoma and fill it with contrast to see if the fluid continued down my GI tract rather than come out my stoma. At least I think that's what she was trying to get at. Anyway, I didn't really get details about the results and I suppose a radiologist will study them.

I go to see the surgeon on Tuesday and hopefully we will have the results and be able to schedule my stoma revision soon. I knew it was this along and I am glad my doctor finally listened to me. I'll let you know what happens after Tuesday.


Hope and Other Ramblings

Why is it that on the verge of any decision, substantial or not, we ask the opinion of others? I believe that long before any decision is made, we have already made up our minds. Have you ever asked someone for their opinion regarding a decision to be made with two possible outcomes? Have you ever immediately decided to go with their opposite suggestion? Almost like they could have said ANYTHING and you wouldn't have considered it. I've done this before and I can't help but wonder, why?

It bothers me that I am like this but I don't necessarily think it's a negative. I think I am someone who stands their ground but I still have a bit of indecisiveness in me. I care about what my friends and family think, even if I am not going to consider their suggestion. Now, in my defense, these decisions that I rebuke in such haste are usually trivial things like what I should eat for dinner or which pair of shoes I should wear. When it comes to bigger decisions, I do take my time and consider all options but I often know what needs to be done before it is done. It's almost like I am waiting for someone to come along with the perfect argument for why I should choose something else. I will be waiting forever if I believe that a perfect argument exists. No decision is perfect.

And I've realized recently, that the perfect argument I'm waiting for is someone to offer me a miracle drug, like Remicade, that will send my disease into a deep remission. There is no guarantee I will ever find something like this in my life. My problem is my hope. I can't give up hope of this miracle. I can't give up hope of having a normal body. And I can't give up the hopes of what I imagined my life to be at twenty five.

In the movie, The Shawshank Redemption, Andy tells Red that, "Hope is a good thing. Maybe the best of things. And no good thing ever dies." I think about this quote over and over again and think that maybe hope can be destructive. It is true that hope never dies. I don't think anyone would choose having a permanent ostomy over functioning bowels, if given the chance. So my problem here is to hope for other things that will better my life. If I want to change my life and accomplish things as I say I do, then I need to hope for a successful surgery. I need to hope for a fast recovery. I need to hope for a smooth transition back into the real world. But why is this so hard?

As I eluded to earlier, I know in the back of my mind I have already made this decision. But I need to get to a place mentally where I can accept it. The only person that can help me get to that place is myself.

I always yell at people who have something wrong with them and don't go to the doctor. Like my mom who has a tooth ache and won't go to the dentist. Or when my dad has the flu and prefers to ride it out rather than take medicine. I always say, "It angers me that you won't fix something that is fixable. If I could go to the doctor tomorrow and be 'fixed' I would be there in a second." But if I look at my situation, I do have a solution. While slightly more serious and life changing than having root canal or popping antibiotics for a week, I have a solution that I can't accept. I hope that will change. I hope...


Another day, another dolla

One of the fabulous things about having Crohn's disease is that you are periodically treated to a variety of invasive examinations. Typically these tests involve nudity, starvation, and the consumption of massive amounts of laxatives. The test I'm being treated to on Monday morning is called a small bowel follow through. Wonderful.

If you are so inclined, I highly suggest you google this and read in more detail the objectives and preparation for this test. While it does involve me stripping down into a hospital gown, I will not be subject to exposing my butt or other embarassing body parts to a room full of doctors and nurses. And even though I will leave the hospital on Monday with more of my pride in tact than after a colonoscopy, this test does involve lots of the same fundamentals such as starvation, stool softeners, and gross liquids intended for ingestion.

I do kid about this because it's really the only way I can keep from losing my mind about it. I'll admit I am sensitive when it comes to these things. I can handle pain and being poked with IVs and needles like a champ. But when it comes to drinking barium or gallons of gatorade laced with Miralax, I'm a whimp. I can never drink it fast enough and I gag merely at the smell of the damn stuff. And if these people try to suggest to me that "it's just like a vanilla milkshake", I might start crying.

So you're probably wondering why I need this test in the first place? Well, after this last month of knowing my ostomy wasn't working correctly, I've been in a war of words with my surgeon. In his opinion, I am shit out of luck. However, I know the symptoms I'm experiencing are not normal and they are indicative of a mechanical problem with my stoma. My GI doctor agrees with this, thank goodness. He has been much more sympathetic and willing to listen to my complaints. Long story short, my stoma is only putting out half of what it should; while the rest continues to travel down my GI tract and into my colon. This is a problem because the whole point of surgery was to divert around my colon due to how diseased it was and the pain it caused. Thus, I am still experiencing horrible pain because essentially my colon is still doing the job it was doing before this surgery. Got it? Crazy, huh?

Okay. So the small bowel follow through will only essentially confirm this as the doctors take X-rays and see the barium continuing through my GI tract and into my colon. And I understand that doctors need tangible evidence in front of them but really my symptoms should speak for themselves. Once this test confirms what I already know, hopefully my doctors will agree that my stoma needs to be revised. But I'll cross that bridge when I get to it.

I am not looking forward to this test at ALL. The last time I had this done it took 8 hours. I am sure some of it had to do with the fact that I wasn't drinking fast enough. However, I do have a healthy small bowel which means a normal transit time and they make you take X-rays every 20 minutes until the barium reaches your large bowel. Hopefully I will be able to drink fast and walk around a bit to keep things moving. I really don't want to be stuck at the hospital all day.


The past several days have sucked, badly. There is no other way for me to describe it. Usually I can deal with the hurt and sadness this disease has brought me. But today especially, I hate Crohn's. I hate being sick. I hate my ileostomy. I hate my body. And I hate that I have forgotten what life was like before this, even though it's only been a year since things started getting really bad. Lately I feel like I have just given up hope.

I will admit I've been bitter this past week. I find that I resent anyone who has a functioning bowel and I am aware this sounds completely ridiculous. I have become annoyed and disgusted at people who complain about such insignificant things. I would give anything to be healthy. The last thing on my mind is anything material or even happiness. Because I know if I was just healthy, I could make everything else fall into place for myself.

I think about the fact that I have missed out on an entire year of my life, completely stuck inside while everyone else lives their lives and it infuriates me. It has been an unproductive year filled with days too sick to even dream about the future or pick up a book and read. It's actually surprising that I've only just become jaded now. I guess I didn't even have the time to think about it before. I find myself celebrating my friends' engagements, new houses, and new jobs but at the same time knowing that if it weren't for Crohn's, that could be me.

Sometimes I just want to give up and accept that I'll be laying in a bed for the rest of my life in my parents house. I can't even be honest with people anymore because I feel like no one understands what I am going through. And even when I am offered sympathy, it's never enough for me and it makes me uncomfortable. I want to have dreams and goals that involve more than the healthiness of my bowels. I should be dreaming about careers, relationships, and building a life for myself like other 25 year olds. Instead I lay in bed bargaining with a God I'm not so sure exists anymore.

I know in the near future, if I truly want my life back, I will have to accept another surgery to remove my large bowel and rectum. I guess mentally I can not fathom that this is the hand I've been dealt. After 8 years of this shit, I still don't believe it sometimes.

I am so afraid to have another surgery because I don't know if I am strong enough to deal with it. As long as my ileostomy is temporary, I can always cling on to the hope of having it reversed if we find a medicine that works for me. But if it's permanent, that's it. For the rest of my life I'll have a bag with no possibility of ever being normal again.

And this is my problem; that I still think I could be normal even though I have this horrible illness. I know I need to accept a new sense of normal for my life, one that will allow me to get back to being the person I was before. For someone who would hate to be normal in every other facet of life, I would give anything to have normal bowels. It sounds like a no brainer in theory to just have the damn surgery and get my life back. I just cannot fathom the finality of it all and I know I am not ready. But really, I don't imagine that I will ever be ready.