A Long Journey

~~Warning: this will be a long post~~

Monday was National Crohn's and Colitis Awareness Day. I wore my purple. Did you?

Thinking about how far I have come and how far awareness of this disease has come made me want to sit down and actually talk about what I have been through and how hard this has been.

My struggle has been going on for 23 years now. I have had this disease for over half my life. I no longer know what it is like to NOT be sick. I can't even remember what it is like to be "normal" anymore. (if there really is such a thing as normal)

I still remember when I got sick. It was March 1988. I thought I had the flu. I was throwing up and had diarrhea, aches and pains and a slight fever. It's the flu. Only it never stopped. A week later, I went to the doctor. They referred me to another doctor and the merry-go round ride started. It took two years to get a diagnosis. In that two years, I lost 50 lbs, I was sick all the time. I was miserable. And no one seemed to have an answer for me. I was told it was depression, I was told I needed to see a shrink, I was told that it was my imagination. (Really, I imagined losing 50 lbs???) And in that time, I was scared and miserable. I had a husband (who is now an ex) who did not understand nor did he care to understand what was going on. So I had no support system. I just knew I was sick and that it seemed like no one cared or could tell me what was wrong with me. Then I developed a fistula. I was sent to a colon and rectal surgeon. He took one look at me and sent me off for a small bowel x-ray (the first of many in my life). He called me the next day with the results. I remember hearing his voice on the phone telling me "You have Crohn's disease." Everything he said after that becomes a blur. You see, I already knew what Crohn's disease was. It was what my birth father had. And for him, it was so terrible and so life altering, that he chose to kill himself rather than live with the disease. So for me, when the doctor gave me my diagnosis, it was a death sentence. I figured I'd be dead before I was 30. I remember crying and crying and crying. And my (ex)husband just could not figure out what I was so upset about. To him, all that mattered was how it was going to inconvenience his life. I started treatment and hoped for the best. The doctor I was seeing then advised me that "If you want children, have them now." I did not follow his advice. I look back on that now with no regrets. I can't say I always felt that way though.

It was now 1990 and I had a diagnosis. I had a treatment plan, but still had no real support. And I was angry, so angry all the time. Even with treatment, I felt awful. And every time I turned around it seemed there was something else in my life I had to change or modify. The GI doc I was seeing was a jerk and did not listen to me about anything. I started looking around for help. I found a local support group. They were a lifeline for me. I finally had a group of people who understood what I was going through and why I was so angry. Looking back, I realize now that that group helped me find my voice. They helped me accept that although I had Crohn's disease, it did NOT have me. How I chose to live my life was up to me. I could cry about it and be angry, or I could enjoy the good times and accept the bad ones when they came. I found a new GI doc. He was amazing. He listened to me and helped me along my way too. I finally felt like maybe I was going to be okay. Then in November of 1992, the bottom dropped out from underneath me.

I collapsed in Sea World. (I used to joke that Sea World had my picture up saying "Do Not Admit!") I was rushed to a local hospital. The next week is a blur of never ending pain. I have a few moments of clarity, but they are few and far between. In the ER, the did a small bowel x-ray (a HUGE mistake on their part!) I just remember them telling me to hold still while all I wanted to do was curl in a ball and die. I can honestly say that I was in the worst pain I had ever felt in my life. After hours in the ER, they FINALLY admitted me and gave me pain medication. I remember my mom calling me early the next morning to ask me what was going on. I remember that panic of having no clue what was going on. I could not even answer if I had seen a doctor. My mom asked me what I wanted and I just sobbed into the phone that I wanted her to come to me. My (ex)husband was on a business trip. To his credit, he did come home. While my mom was headed to the hospital, they took me to x-ray. Shortly after my mom arrived, the doctor came in, they had discover free air in the abdominal cavity. I was headed to the OR. I had a fever of 104.5 and a hole in my small intestines. From there, everything is very fuzzy. From what I am told, I was in very bad shape. It took hours in the OR to clean up the mess created by the small bowel x-ray in the ER. (I had barium all over the abdominal cavity.) They did not put me into Critical Care when I came out of the OR, but from all accounts, they should have. All of my levels were bottoming out. My mom (who has a PhD in nursing) thought I was going to die. Maybe I should have. At least that is what I thought for a long time after this happened. I finally ended up in CCU, needed a blood transfusion and lots of prayers. All I remember is waking up in CCU and feeling like I had been run over by a truck. I spent almost 3 weeks in the hospital. And when they finally let me go home, I had a huge abcess in my scar line, I could barely walk across the room, and I was weak and underweight. But home I went. (Keep in mind, the (ex)husband was NOT the most supportive or helpful person in the world for me to go home to.) Recovery was slow, but I made it back...to a job a I hated and husband who thought I was a burden.

Three months later, February 1993, it happened again. At least this time, I knew what was going on. I woke my (ex)husband and told him I was pretty sure I had another perforation and that I needed to go to the ER. He drove me there waited til they checked me in and then left. He never said a word to me. He just walked out. Again, they did an x-ray and found free air and off to the OR I went. I called my (ex)husband first to let him know. He told me he was on his way. I then called my mom and dad. They both made it to the hospital waiting room before my (ex)husband. I went into surgery alone. And all I can remember thinking was that if I died, my (ex)husband was going to be so upset because he did not get to tell me goodbye. Crazy I know, since he really did not seem to give a damn, but I still loved him and thought he loved me. This surgery went much better. I did not have all the complications I did before. My (ex)husband did not speak to me until he was sure I was not going to end up in CCU. I tried to tell myself he was just scared of losing me. Looking back, I wonder. Maybe he was just pissed off that I messed up his plans. My hospital stay was shorter this time. And I went home and back to work although I was "re-located" to a new job because my old job did not "want someone so unreliable to work for them". I was beyond frustrated. I vented to my support group and found acceptance there. Even if I found it no where else.

I slowly realized that my health was getting worse. And my doctor advised me I was headed for surgery yet again. So in February 1994, I had my third surgery. Because this was planned and not emergency, it went very smooth. The doctor was able to "fix" the areas from the previous perforations. He also removed areas of small intestine. (My disease is exclusively in my small intestine, which makes it a little more complicated since you can survive without a colon, but not without a small intestine.) At this time, my doctor advised me that I needed to see about going on disability. The stress was making my disease much worse and I needed to find a way to slow things down. And with 3 surgeries in a 15 month period, my track record was scary. (Of course he had no idea about the stress I was living with at home because of my (ex)husband. No one did. To anyone on the outside, we seemed like the perfect couple.)

I applied for disability and was approved. And I decided to go back to school. I picked accounting as a major (not because I wanted to, but because my (ex)husband "encouraged" me to go in that direction.) In the meantime, from the outside, everything looked okay. Inside I was a mess. I wanted kids. But also felt somewhere deep inside that having kids might be a mistake. I did a lot of research on pregnancy and Crohn's disease. (There was not a lot of information out there on it.) I was watching my friends all having kids and found myself very unhappy and very resentful. Yes, I was happy for my friends, but at the same time I was angry that my health was not anywhere near good enough for me to think about having kids. I did not respond well to any of the medication that was available at the time. I felt awful most of the time. (I had a friend who stated what Crohn's is like very well. She said "Imagine you have the flu and everything that goes with it...the vomiting, the diarrhea, the achy body and the fatigue. Now imagine you feel that way every day. There is no end to it. That is what it is like to live with Crohn's".) Yes, I would have a good day or two, but mostly I felt bad. The problem is, I looked healthy. So obviously there must be nothing wrong with me. And back then, Crohn's was still a taboo disease. It is a "dirty" disease. No one talks about it. So support was not there and understanding was even less. So I was going through the motions, existing with Crohn's. But I was not happy. My marriage was crap. And my health was worse. But on the outside it looked good.

I made it through 1995 and into 1996. Then February arrived and I had another perforation. This was my 3rd perforation and my 4th surgery in a little over 3 years. Again, my (ex)husband was a jerk. He barely came to visit me while I was in the hospital. I spent most of my time recovering there alone. By this time, I was a pro at recovery. Get out of bed in 24 hours. Walking the halls within 48 hours. I forced myself to move because I knew the alternative was to end up in worse shape. This surgery was VERY brutal. I was vomiting violently before surgery. (They gave me demerol..I have since been told to list this drug as an allergy) They put the NG tube in while I was awake. (Definitely a BAD thing to have to experience while I was awake!) Even after the NG tube was in place, I continued to vomit around the tube. It took 21 tries before they finally got an IV started and running. My regular surgeon was on vacation and the doctor covering for him was AWFUL! This particular experience does not rate very high on my list. But I came through my third perforation alive again. When I came home this time, I knew things were different. My (ex)husband basically told me I was ruining his life, I got sick on purpose, I was a failure as a woman, I would never be a mother and that I should get down on my knees and thank him for even bothering to stay with me. I hit a new low at this point. The sad part is that I believed him. I spent a lot of time questioning why I was still alive and wondering if everyone would just be better off if I was dead. I actually planned ways to die, but I could not go through with any of them. Part of me finally understood what drove my father to take his own life and that scared me. It was a very dark time in my life. I guess I needed that time though to help me realize that even in the darkest time, I survived. Somehow I made it through and came out stronger on the other side of it all. I realized that my marriage sucked and that my husband was an asshole. He was not going to change. I don't know why that wasn't enough to make me leave him, but it wasn't.

A few months later, he cheated on me. Funny how that changed things. Treating me bad was okay. Blaming me for everything wrong in our life was okay. Emotionally abusing me was okay. But cheating on me..that was where the line was drawn. I asked him for a divorce. I was terrified about being on my own, I imagined I'd be alone forever and that he was right, no one would ever love me again. After all, I was damaged goods.

Leaving him actually helped my stress level. My meds were still not really working, but I actually felt better than I had in a long time. I had relationships. Some were good, most were bad. I never really knew what to tell guys about me. How much was enough? How much could they handle? But I had to explain the scar. I had to explain the bathroom trips. I had to explain the diet and everything else. You can't begin to imagine how hard it is to "hide" something like this when you are in a new relationship. Spending the night with a guy for the first time was a nightmare for me. I knew I would have to get up and use the bathroom at some point during the night. I knew that I would be "exposed". And I was always embarrassed. Truth be told, I still am. I HATE having to use the bathroom in friends homes. Part of Crohn's means I always have diarrhea. And all the wonderful things that come with it. The smells, the gas, and the shame.

I was doing okay though. Leaving my (ex)husband seemed to free me in a lot of ways. I realized that he was wrong about some of it. There were men out there who wanted me. There were guys who did not see me as defective or broken. And yes, there were jerks. I learned to really accept my disease. I think before, I was trying to, but he always held me back from really accepting it. I also really felt like I started to live and appreciate the times that I was feeling good. Those times were so few and far between back then. By 1998, my health was headed downhill again. I spent time in the hospital in February for a partial blockage, but managed to avoid surgery at that time. I stayed healthy enough to take a trip to Europe with my college choir group. (I had changed back to being a music major after the break-up of my marriage since he "chose" accounting as my major for me) In the fall of 1998, I had my 5th surgery. Again, it was a planned surgery. At this time, the surgeon removed more small intestines. I also had a GYN in on that surgery. The damage to my abdominal cavity was extensive. I had to have my fallopian tubes removed. I knew going into the surgery that it was a possibility, but had been told that I could still have kids via IVF. When I woke up from surgery, it was a different story. The colon and rectal surgeon told me having children would be impossible. I was down to between 7 to 10 feet of functioning small intestines left. That sustaining my own life was going to be hard enough. Sustaining a pregnancy would be impossible. I was also told that I was one resection away from being on TPN for the rest of my life. I'd like to say I accepted the news with grace, but I didn't. I was angry. I felt like I had been kicked again. Every time I felt like I had accepted things and made peace, something happened to force me to take another look. The possibility if never having kids really hurt. I spent a lot of time crying over it. And when I say a lot of time, I mean well over a year. During that time, baby showers made me cry. I avoided friends who had children. It just hurt too much. For as long as I remembered, I had wanted children. Anytime I saw my life when I was growing up, children were always a part of it. Accepting the very real possibility that those children I had dreamed of were never going to be a reality was sobering. But I managed to get to a place where I was okay with it.

I met Jim in 2000. He was different. It was like he saw through me and into my soul. Even from the beginning, he just seemed to know me. And as I revealed things about me and about the disease, he never flinched. He was just there. And somehow he made it okay. Yes, I was embarrassed still, but somehow he made me feel like it was okay. I tried to "make" him leave me. He stayed. He even forced me to take better care of myself. When I couldn't afford my meds (which was pretty much all the time), he paid for them. He talked about the future and before I could even tell him kids weren't part of it, he knew...and it was okay with him. I was enough for him. And that really made it okay for me.

We got married in 2002. My health was awful. We got married in May and by August, he checked me into the hospital. I had a blockage. I kept waiting for him to get mad or to leave. He did neither. He just stayed with me and told me everything would be okay. He asked questions and wanted better treatment for me. When I left the hospital, I weighed 112 lbs, an all time low for me. I can honestly say I looked and felt awful. I could barely get out of bed most days. The doctor put me back on steroids. I hated them. They had never worked for me and now I refused to take them. Three months later I was close to being re-admitted for another blockage. I made a call that honestly changed my life. I called a new doctor. They started me on the remicade protocol. At the time, it was still in the early stages of being used regularly. For me, it was the first and only thing that has worked for me. Life as I knew it started to change. Yes, the disease was still there, but I started to have more good days. I put on weight for the first time in my life (other than steroid weight) and I actually felt good. Then the biggest miracle occurred. The doctor asked me why I had been told I could not have kids. I was then given the news that with remicade, I might be able to have children. A whole new world opened up for me with that.

I had to go through IVF, and that was hell in and of itself, but worth it. One round found me pregnant with twins. I had a very normal pregnancy. My disease did not get any better, but it did not get any worse either. I took remicade throughout my pregnancy. And my twins were born 6 weeks early.

Life since remicade has been completely different. Yes, I am still sick. I will always have diarrhea. I have lost too much of my small intestines. I have to take multiple supplements. I struggle to keep my potassium normal (it rarely is normal). I have aches and pains all the time. I get kidney stones a lot. There are still days when it takes everything I have to get out of bed in the morning. I have had minor surgeries since remicade, but I have managed to avoid having major surgery and losing any more of my intestines. I have two beautiful children and a husband who accepts me. Life is very different.

I have come such a long way. But so has this disease and the acceptance of it. When I got sick, no one would talk about it. And the thought of having a national awareness day was not even thought of. Now we can discuss it. There are walks to show support and a day to recognize the disease. There is a large outcry for a cure. And hopefully I will see a cure in my lifetime. The journey has been long and painful. But I wouldn't trade it. I has shaped me and made me who I am. The tears I cried along the way made me stronger. The struggles made me appreciate the good times. Yes, Crohn's disease is a part of me, but it does not define me. The pain is always there, but I can smile through the pain. I am a survivor.