I Am the Boss of my Body

So its been a few weeks since I have updated my blog simply because the Crohns is extremely active right now and I have just been to exhausted.
But I have been reading a lot of message boards and online discussions about this disease and living with it, and I have to say, I am appalled at some of the incredible things people believe about their disease simply because a doctor told them or simply brushed them off.
Here's my thinking. Its MY body. I live with it, I wash it, I feed it (if I CAN eat), I rest it (sort of). I am in this body 24/7/365 and I have to deal with the effects of not just a disease process, but side effects from medication and the fabulous onset of peri-menopause. So I think, and believe strongly, that I am the one responsible for my body. So when someone, yes, even a doctor, tells me something, I research it. I want to KNOW, in grand, in depth detail, what I put in my body, what is happening with my body and what I can do to help heal my body.
I am amazed in this day and age of information that anyone would ever simply blindly take as gospel anything a doctor says. Don't get me wrong, I adore my doctor. He is amazing. He's intelligent, and caring, and excellent in his field. But when he says, lets try this ABC medication. I just don't say "okay". I ask what the effects are, what the rate of success has been, what interactions it has with other medications. I go online to trusted sites and read the information there, and I talk to other people who have taken that medication and ask what their experiences are.
And this goes to the idea of taking charge. One thing that a lot of people with chronic illness experience is a sense of lack of control. Their body is going haywire and they have no control. So TAKE control. Learn everything you can about your disease and your treatment. Be proactive. Be the boss of your body.
If I feel uncomfortable taking a medication I tell my doctor No. "GASP!!" Yes. I actually can tell my doctor No. Its MY body.
For example. We tried a medication called Imuran. Its a chemotherapy drug that has had some success as a treatment for Autoimmune diseases particularly Crohns and Ulcerative Colitis. Now, I was hesitant because as soon as I heard the words "chemotherapy" my warning bells began screaming and I think I even saw red lights flashing in my brain. But he assured me that he's used it with success and it was worth a try. We attempted 3 different times with 3 different doses and every time I ended up with serious infections. One time I even had M.R.S.A. in my FACE. So this last time, I started developing new infections on my hands and so I called him and said I am not taking this any more. The world didn't stop, no one called me a nut job, no men came and took me away. My doctor simply said okay. He recognizes that I will be the one to make the final decision about my care.
There is no excuse for ignorance especially with the one life we have and with the incredible amount of information available. Own your body. Own your disease. Be the boss of your body and your care.

Pain Pain Go Away....

So I had to call the doctor the other day to renew my pain medication prescription. I hate doing it because I can't help but feel like I am being judged.  I am extremely lucky in having a doctor who understands that I do have chronic daily pain and the medical need to control it.

 But not all doctors are that way and many folks like me, who deal with diseases like Crohns which are extremely painful, unfortunately suffer and only get relief when we get so bad we have to head into the emergency room and even then, we usually get treated with doubt about our level of pain. As if we are coming in only to get a fix of pain meds. Sadly, there are people who take advantage in order to get pain meds which in turn hurts those of us who genuinely need to get some pain relief.

In this society, its sad to think that because we take pain medication, many will automatically label us as addicts. 

Let me clarify a few things. 

I am in pain every single day of my life. Its real. Its horrible and it can be debilitating. Have you ever had one of those large, white ulcers in your mouth that no matter what you do, just hurts until it goes away? Well imagine those 100 times worse from one end of your digestive tract to the other. Open, weeping, bleeding, infected sores. Inside your body. Now, remember how it feels to have the flu? The body aches, the joint pain, the chills with the fever? The all over bone deep tired that no amount of sleep can fix? Well, take that and multiply it by 100 and there you have every day of my life.

Now. Tell me I don't need pain medication? Sure, I would really rather NOT take it. As it is, I take a very low dose of a non-addictive opiate that just takes the worst of the pain off so I can still function but doesn't give me total relief. See? I still feel the need to explain and justify myself even in my own blog!! 

Having pain every day, day after day, week after week, is damaging to your body, it effects the heart, the muscles, your blood pressure and your mental health. My doctor understands the need to treat the WHOLE body and mind. Along with my Crohns medications, and my pain medication, I take a anti-spasmodic for the gut, extreme doses of antacids, and anxiety meds because along with everything that happens to my body from this disease, it also effects my mind and my panic attacks became so bad I actually had what they called a "cardiac event". 

So, before you immediately roll your eyes, or judge someone who is on regular pain medication, know that for every real addict out there, there are also real people suffering real pain from real diseases. 

Why I Hate Diets

One of the biggest pet peeves I have found for a lot of us folks dealing with a bowel disease, is the assumption that diet is a key to the "cure". I understand that when people bring different diets and ways to eat healthy to my attention, they are doing it because they care and genuinely think they are helping. And that is very appreciated. BUT, the reality is that every single person who has Crohns or Ulcerative Colitis, has a different reaction to foods. There are no two of us alike. Because diet, what we eat, only effects our symptoms. It does nothing really for the disease process itself.
One thing everyone needs to understand...there. is. NO. cure. YET. I can guarantee that anyone you talk to who fights this has tried every possible diet configuration known to man, and some we make up for ourselves. I have even ate straight baby food and still wear a vitamin batch in the hopes of getting something good into my system.
If someone says to you, or you read in an advertisement, that a certain way of eating "cured" them of their disease. Frankly, its a huge, heaping, steaming load of bullshit. Again. there is NO cure. Bowel problems are one symptom of a much larger disease process. This is our immune system turning on us. Not our gut. It just happens to be right smack in the line of fire.
What we can do, and most of us have done, is keep a detailed journal of foods we eat, symptom we experience, our environment, our mood, what was happening at the moment. And we can usually quickly find things that are triggers for worsening symptoms. By learning from that and by taking very strong medications, we can sometimes achieve whats called remission. But for most of us that is a rarity. The best we can do is control the symptoms and hope for one good day at a time.
For example, when I am in a bad flair, anything I eat bothers me. A glass of water will cause the tell tale rumble and cramping pain. Literally. Water.
Some days I can eat tomato, some days they make me deathly ill. Dairy doesn't bother me even though many claim staying lactose free helps, processed foods destroy me, others live on canned soup. Gluten free does seem to help, but that is probably because a large part of the bowel has trouble with gluten in a healthy person. For someone who has short bowel, or ulcerations, or strictures, the irritation is multiplied. But that doesn't mean all of us do well on gluten free. I know someone who lives on wheat toast and raw oats.
So why does it bother us when someone says things like "have you tried (insert diet/appliance/supplement)?"
or "I read about someone who was cured by eating/not eating (insert food)..."?
It bothers us because it makes us feel like its assumed we haven't tried everything possible. That if we just did this one thing, we could be disease free. Do you not think that after 25+ years of battling this disease and 13 surgeries, I would do anything ANYTHING if I knew it would help?
Please consider your words when talking to someone with this problem. Because we struggle with things like just simply needing a shoulder to cry on, or a friend to NOT ask if they can help. Crazy I know. But sometimes we just want the disease to be ignored and to be treated like anyone else. I went to dinner with some friends last night. Everyone was very sincere in asking how I was feeling. Then we had dinner and not one person commented on what I was eating. We laughed, we joked and for a few hours I felt normal. That's what we need. Friends. Friends who trust that we are doing what we can to help ourselves and know we will ask for additional help if needed but who recognize that we simply want to make the most of every moment we can.