A Healthy Disrespect for Doctors

I don't know how it happened, exactly, but I learned, years ago, to have a healthy disrespect for doctors. This doesn't mean being rude or unkind, it simply means looking out for your own health. We all tend to believe that doctors know everything, that they hold all the cards. Well, we're wrong, plain and simple. The hospital/clinic group I am a patient with has a "Speak Up" policy which is something I have been doing for more than 20 years.

When I first started out on my journey with IBD I had no idea what I was dealing with and I had to learn fast. My first doctor was, quite simply, bad. I won't go into detail, but I will say that he relied heavily on prednisone. A few months after my diagnoses he did a colonoscopy which showed that I was in remission, but he read it as he must have been wrong and I did not have Ulcerative Colitis. He took me off of the prednisone and said I was free to eat anything I wanted. What?!? I immediately flared and we found a new doctor. He was connected to a teaching hospital, and I really liked him. He was very knowledgeable and had great resources.

When I couldn't go to him any longer, I went looking for another doctor and it was very eye opening. That first doctor I saw did not talk to me; he talked over my head, as if I wasn't there, and spoke to my mother. He told us there were all these tests he wanted to do and then he did a flexible sigmoidoscopy where he had me lay my torso on this table which he then flipped over so my head was down and my naked butt was in the air. Um, yeah... I kid you not. I felt humiliated, to say the least, and I was so mad I cried and bitched all the way home (two hours). We all agreed he was not the doctor for me and never went back. The next doctor I went to was amazing and I stayed with him for eleven years, until I moved away.

There was a really high bar set when I went looking for a new doctor in my new town. My mother reminded me of the doctor we tried first. He was nice and all, but it was probably mostly my fault that things did not work out. The first time I met with him he made suggestion after suggestion all of which I rejected because they had not worked in the past. Mom reminded me that he seemed to just sink as I rejected each thing and he seemed older when we left than when we entered his office. I told you, I have a healthy disrespect for doctors. I'm not afraid to speak up for myself.

I will not bore you with talk of the doctor I saw who was part of a large group practice. I'll just say that he was a chore. Then I tried yet another doctor who was, again, nice and all, but he told me that we were left with prednisone. A long time ago I rejected prednisone because it makes me crazy. So, we were at an impasse. Together we decided that j-pouch surgery was a good option. But that's a story for another time. Following my surgery, I stayed with my surgeon for a couple of years, he was very good, but when I developed chronic pouchitis he told me that I had to find a gastroenterologist.

So, the search began again. This time I had the added difficulty of having a j-pouch, which after making at least three calls we were told that none of the doctors would see me because they didn't treat patients with j-pouches. Again, what?!? I was eventually able to find a doctor who was willing to treat me and it has been a learning experience for both of us. I have what's known as refractory pouchitis, meaning it does not respond to medications. Thankfully, this doctor and I are working together on my health care. I listen to him and he listens to me and he's not too arrogant to ask for help from his colleagues when he thinks he's in over his head. And with me that's a pretty common feeling. Can you say "refractory?"

I must say that I have been incredibly lucky when it comes to doctors. I haven't had to fight with doctors, very much. We have to remember that doctors aren't infallible. That our health care is a collaborative effort between doctor and patient. Don't let doctors intimidate you; ask questions, clarify answers before you leave and if you don't understand don't be afraid to call your doctor(s) for clarification. Most importantly, make sure you are heard. I know, easier said than done. I struggle with doing this, myself. Making notes helps, writing down questions or what you want to talk to your doctor's about is a big help.

Okay, this post is extremely long so I'm just going to say, good luck and speak up.

My Body Has Betrayed Me

I’ve seen this attitude around the IBD community and I don’t like it, but cannot discount the feeling. Crohn’s disease and Ulcerative Colitis can make us feel out of control, like our bodies have taken the reins and we are just along for an extremely bumpy ride. When I read this phrase I had an immediate and gut wrenching reaction. It made me feel very sad.

I do often feel the need to whine, “Why me?” “What did I do to deserve this?” I get in moods where I don’t want to take care of myself. I do things which are reckless; eating the wrong foods, not resting enough, forgetting medications. When I spent ten years trying to go to college and would have flare ups before a semester was completed, I felt like my body was betraying me. Four years ago, when I had surgery to take care of a stricture in my small intestine, had an ostomy for 5 months and after they reconnected me I had accidents for the first time, I felt like my body was betraying me. To name a few. I know, for many people an ostomy is life saving, but I could not come to terms with what was going on with my body. I admire people who live life to the fullest with an ostomy. Anyway, this is not about ostomies.

Now, I find myself somewhat more accepting of my body. Things have gotten a little better, thanks to acupuncture and yoga. I try to not be so angry when my j-pouch tells me I have to go to the bathroom nearly every two hours. I try not to cry uncle about the gut pain. I believe that having a negative relationship with our bodies helps to make our symptoms worse. But, I have to admit that I am not a naturally upbeat and positive person. I takes hard work for me to have a positive attitude.

Right now, I am in pain. I went to the bathroom about an hour ago and I feel the need to go again. I know this disease is more than a “pooping disease.” Still, for me right now, it is about the pooping and the pain. The pain is frustrating and stressful, not things conducive to to a positive attitude. But I try.

I wish we did not feel that our bodies have betrayed us. It’s such a strong and ugly word.  

For Mother's Day

As my second post on this blog, it is long overdue. Sorry, I haven't had any inspiration and I've suffered from extreme fatigue for a long time, now. I blame it on the pain in my belly which is exhausting. I just haven't felt good, not enough of a flare to put me in the hospital, but enough to keep me down. I'm feeling a little better now, and I hope to write more post in the future.

In honor of Mother's Day, I'd like to say a few words about my mother in relation to my IBD. I'm one of the lucky ones. She has been through a lot with me and, as we like to say, "We're in this together."

While I can't speak to how my mother felt when I was first diagnosed, I was scared half to death and I'm sure she was, too. My first night in the hospital, as I think I have already mentioned, while I was having a painful blood transfusion, she stayed with me and read to me from my favorite book at the time, "Restaurant at the End of the Universe." She has helped me deal with doctor's, often making phone calls to them because I have an unreasonable dislike for the telephone, (I've gotten better at it.) and she still goes with me to my GI appointments, we've done it for this long why stop now. :p  She has been my best advocate, though I can't overlook my father's role, but this is about mothers. When I'm in the hospital she takes the 12 hour night shift, my father the day. I can't begin to tell you how helpful and stress reducing it is to have someone there to advocate with the nurses and doctors. She's also there in the middle of the night when I need to go to the bathroom, can't get out of bed by myself and can't wait for the nurse to come. Mostly, she is just there, always, in and out of the hospital. She learned to be a short order cook when I was first diagnosed and had a restricted diet, and she has learned to cook gluten free now that I can't eat wheat. She is empathetic and selfless, she is my first and best friend. I could not have survived this journey without her.

I love you Mom

An Introduction

Hi, I'm Paula and I have Crohn disease, IBS, a j-pouch, and chronic pouchitis. Click the "about me" tab to read more about my story. After you read this post, of course. ;)

I'm not sure what made me want to start a blog. There are so many better bloggers out there who can tell their story and advocate better than I ever could. Still, I thought I might have a different perspective.

I'm also not sure what I want this blog to be; advocacy, catharsis, providing another view of IBD. To be honest, mostly I think it's for catharsis. Everyone needs an outlet, somewhere to have your voice heard. I'm no different.

When I was fifteen years old I hurt my ankle. My doctor diagnosed it as arthralgia, and I spent several weeks that summer on crutches. My doctor put me on Naproxen, not a smart move. Shortly after that I started having symptoms of IBD; bloody diarrhea, pain and dramatic weight loss being the most prominent. I was taken to the hospital on July 31st. Blood transfusions, massive doses of prednisone (this was 1986, after all), what I thought was a colonoscopy , but which might have been a sigmoidoscopy, with no anesthetic. Within a few days, they diagnosed me with Ulcerative Colitis. That is how I spent the summer of my sixteenth birthday.

There's not much I remember about all that happened 28 years ago. I remember being scared out of my mind and not knowing how to tell my parents about the bloody diarrhea. I remember my father carrying me to the car to take me to the hospital, because I was too weak to walk. I remember my mother reading Douglas Adams to me, overnight, while I was having a painful blood transfusion. She'd read, I'd fall asleep; she'd stop reading and fall asleep; I'd wake up and wake her up, and the cycle continued. I remember the excruciating scope, and seeing the monitor with my bloody intestine in all its gory glory. I remember not knowing what was this "colon" of which the doctor kept speaking. I don't know whether my stupidity was because I was that stupid or because I was so out of it. Either way it still cracks me up.

I know, logically that I am one of the lucky ones. I did not suffer for more than a few weeks, before they came back with a diagnoses. I have no horror stories of years of frequent hospital stays. I do have my hospital horror stories, just not as many as some. I did have to be hospitalized overnight for colonoscopy prep, because I would get dehydrated, couldn't keep up with the output. I went into shock once during the prep and had to be hospitalized for a week. After that, I needed IV fluid support anytime they did a scope. Now that I have a j-pouch, I can handle the prep, just fine.

This is just an introduction to my story. I plan to post as often as I can and, with luck my blog will find a place in this community.