I find myself getting depressed over the amount of pain I'm in. I know I should feel lucky that I don't have something worse than Crohn's but being in pain this often makes me really down. I just cry sometimes because the pain and the medicine make me so exhausted that I don't want to get up in the morning or do anything throughout the day. I sleep all night and wake up feeling like I didn't sleep a wink. Graduate school is hard enough without having monthly trips to the ER and intolerable pain. Sometimes I wonder to myself "How can I live life like this?" 24-year-olds are supposed to be care free but I'm just blue all the time because I hurt. I tell myself that this just isn't fair. But, when I think that I try to remind myself how lucky I am that all I have is Crohn's and I get even more down for feeling down about something as minor as Crohn's. It is a vicious cycle.
I'm not in pain constantly, it comes and goes. There are days that I am 100% pain-free and there are days that I'm doubled over in pain almost the entire day. Doctors always ask me to rate my pain on a scale of 1-10. I hate doing this. What if I'm over-reacting? What if I have low pain tolerance? What if my 10 is someone else's 4? I play their game anyway. The highest I've ever said is a 9 (I couldn't convince myself that the pain couldn't get worse...maybe I was holding out hope that it wasn't the worst it could get...that I hadn't hit rock bottom). I said I was having a 9 pain the last time I had to go to the emergency room, I was in so much pain I couldn't pick myself up off the bathroom floor. The pain I deal with daily is a sharp pain, I rate it at a 5 or 6 at the sharpest moment. I think I rate it lower because it isn't continuous. The pain will take my breath away when it hits but goes away almost immediately. I think if the intensity of the sharp pain were to ever stick longer than a second it would become a 10 quickly. I can usually find a position laying on my side that eases this pain. But who wants to lay on their side all day? I also deal with a cramping pain daily, this is worse than the sharp pain because it lingers longer. I call it a 7 or 8, especially when it radiates to my back and causes dull lower back pain. Imagine the worst menstrual cramp you've ever had and imagine it wraps around your side and into your back. It is truly awful. When I'm in this kind of pain I can't get comfortable in any position and it affects my sleeping.
So I've begun the search for pain management techniques. I had an appointment with my GI doctor on Tuesday the 13th and my family doctor on Thursday the 15th. My GI doctor gave me options to control the pain with medication (i.e. double the dosage of Prednisone, take the maximum dosage of Extra-Strength Tylenol...the only pain reliever that won't cause more bleeding in the GI track.) I'm not entirely convinced that doubling my steroid intake will take care of the pain...in fact I'm hoping to get off steroids ASAP because I hate the side effects...and I already know that the maximum dosage of Tylenol merely takes the edge off the pain. Rumor has it that Dilaudid (a pain medication that I get when I go to the ER in IV form) comes in pills. Yes, this is news sent directly from Heaven. I'm just trying to figure out the best way to approach getting my hands on some of that without seeming like a crazed drug-addict. What can I say? That stuff works. It actually takes away the pain! To give you an idea of the pain...morphine did nothing for the pain. NOTHING. Good thing I had an appointment set up with my family doctor. The GI doctor did set up an appointment for me with a dietitian to help regulate my diet and find a healthy way for my body to absorb the nutrients it needs. Another problem associated with Crohn's disease is that the food passes through me without my body absorbing the necessary nutrients. Hopefully this dietitian can help figure out a good diet for me. So far beverages are the only thing I've had to cut out of my diet due to pain. I can't drink anything carbonated, caffeinated, or dairy-based. Although, after talking with the GI doc, we're going to try to work dairy-based liquids back into my diet. But absolutely no carbonated or caffeinated drinks can enter my system or I'm in pain for days.
Anyway, a couple of days after my meeting with the GI doc, I had a meeting with my family doctor. Sometimes I feel the family doctor is a little more in tune with what it means to live every day in pain and may have more motivation to help you manage that pain. I get the impression from my GI doc that they are more interested in getting the disease under control than getting the patient comfortable. And you know, I'm totally okay with there being a doctor focused on the disease and a doctor focused on me. But it is time that I seek out a doctor focused on me and that is why I scheduled an appointment with my family doctor. I met with the family doctor on Thursday, April 15th. After talking with her for a while, she prescribed me a medication that should help with my mood swings (probably brought on by the prednisone and the stress of the diagnosis) and the constant pain that never seems to goes away. She also suggested that I make an appointment with someone to help me deal with the lifestyle changes associated with a chronic disease and severe pain.
I haven't been able to write about my most recent stay at the hospital, but when I'm able to, I'll be sure to post. There is certainly a lot to share.

















