Inflamed and Untamed

Ewwwwwwie I’m about to show you a gross picture. This picture was taken exactly a year ago today. That means today is a 1 year anniversary for me so let’s all eat cake! 

Most people would be upset to get results like this. I had inflammation and ulceration throughout my entire j-pouch and as far up my small bowel as they could see with the scope. What this meant was that I was in a bad Crohn’s disease flare. I woke up from my scope and was given the news that I had Crohn’s disease and I was…happy. No, I was more than happy, I was elated, ecstatic, I wanted to jump up and down with excitement! Not exactly the way most people react when they are told they have Crohn’s disease. 

Let me explain. I was originally diagnosed with ulcerative colitis, and for 15 years that is what I thought I had. Four years ago I had my colon removed since things were so bad and that is supposed to be the “cure” for ulcerative colitis. However the next 3 years was a whirlwind of complications and hospitalizations.  You can read about that in my blog  When Doctors Don’t Believe You.  Anyway, eventually I had come to the hospital so many times that doctors started to think I was lying. I was told I was drug seeking, I was told I wasn’t sick because I had make-up on, and I was “talked to” about maybe it being in my head. They stopped doing tests and would just put me on fluids and pain meds and then send me home a week later. All I wanted was to feel better and I was so discouraged to see that no one believed me and that I wasn’t being taken seriously. That has led me to anxiety that still remains that doctors wont believe what I tell them or that they will think I only want pain meds. This causes me to withhold information from doctors and to not seek help when I need it.  

In the back of my mind I always felt that I had to have Crohn’s disease. A lot of my symptoms are things that most UC patients do not experience and that you see more often in Crohn’s disease patients such as having absorption problems in the small bowel and strictures.  The pain that I felt would feel just like when I had flare-ups when I had my colon.  I just knew that this had to be Crohn’s disease and every time I mentioned that they would just tell me that they couldn’t find anything, but eventually they had stopped looking. 

Last summer at the end of May I started to lose weight pretty rapidly even though I was eating more calories than I usually do to compensate for the weight loss. Just a month before I had been hospitalized and all they did was an x-ray of my tummy and put me on pain meds and fluids for a week and then send me home.  At this point I was getting really frustrated with the doctors and lost all hope at finding any help. Soon though I really had no choice but to call my GI doctor because the weight loss would not stop and I was becoming so tired and weak that I was having to call into work and could hardly get off my couch to walk down the hall to the bathroom.  During my appointment I explained to him the rapid weight loss and told him I was concerned that my small bowel wasn’t absorbing correctly because I was eating more than usual and counting calories to put on weight.  I told him about how extremely tired I was and how weak I had become and that it was causing me to have to call into work.  I told him about the pain that I was in and how it felt just like the pain that I had when I had my colon and I had really bad flare-ups. And you know what he did for me? NOTHING. He told me that I probably wasn’t eating enough and that could explain the weight loss (apparently he didn’t listen when I told him I was eating more than normal), he told me that he wasn’t even going to take blood work because I had blood work done a month before when I was in the hospital and it was fine back then. He prescribed for me an anti-depressant (I was furious) and a prescription for tramadol and levsin and then he sent me home.  

During my ride home my cheeks were burning with anger and my eyes were welling up with tears. I knew that something was wrong and he didn’t even believe me. I am not a liar and all I wanted was help. Days passed and the weight loss continued so that my normal 115-120 pound weight got down to 100 pounds which is small for a 5’5” girl. I wasn’t able to work and again felt terrible for having to call in because of my health and all I did was spend my time laying on the couch too weak to do anything else. I had to hold onto the walls to walk down the hall so that I wouldn’t fall or pass out.  On a Saturday morning in early June last year I woke up feeling awful but also when I got up to walk my feet went numb and tingly so that I couldn’t walk.  Then my hands did the same thing and ended up cramping up so bad that they kind of froze in this claw-like position and it hurt really bad.  I knew that I had to go to the ER but I also knew that if I went to the same hospital that I had been going to for the past 4 years that I wouldn’t be taken seriously. So I made the decision to go to a different hospital located an hour away from my house.  

I was admitted, I was scoped, and I was told…you have pouchitis. I knew that I didn’t have pouchitis. When you have been sick for so long you learn your body really well and you recognize certain pains and symptoms. I knew that when I have pouchitis that I get flu-like symptoms accompanied by frequent and urgent bowel movements. I felt discouraged again and was put on Cipro which when I do actually have pouchitis makes me feel better within a day or two.  A few days went by and the surgeon basically was downright rude to me and told me that I should be fine and walking around and should eat a hamburger. This time was the first time I ever stood up to a doctor. I finally found my courage and told him that I didn’t have pouchitis and that I didn’t want him in charge of my case anymore.  I was then scoped again by another GI doctor and that is when the above pictures were taken.  I had Crohn’s disease. I HAD CROHN’S DISEASE!   I knew it, I knew it! 

I was put on IV steroids, TPN, and pain meds. I finally felt like there was an answer to all the things I had been going through for the past few years and I finally had proof that I wasn’t making it up which was such a good feeling. I stayed in the hospital until the 2nd week of July and ended up starting remicade for treatment.  Me and that surgeon made up and he’s one of my favorite doctors now and I finally have a GI doctor who I feel is knowledable and will do what he can to try and help me when I am not feeling well.  

So this is why I was elated to get the diagnosis of Crohn’s disease. For fifteen years I had been used to saying that I had ulcerative colitis that it was weird to say I have Crohn’s disease.  

Happy Crohniversary to me!