My Story
By: Jodie DeLay
I was a lucky kid. I was born into a fabulous, loving family; grew up in a tiny, idyllic town in Montana and I was rarely, almost never, sick. I was pretty good at everything that I tried and I tried a lot of things. I was constantly burning the candle at both ends and had HUGE dreams. I never really knew failure of any kind. That’s kind of a bold statement, but I say it because I know now what a gift it was. I wasn’t GREAT at everything by any means, but I never really struggled. Even so, because I had great parenting, I learned to work really hard. As they say, failing to prepare is preparing to fail…so I was always prepared.
I decided pretty early on that I was going to be a Supreme Court judge handing out justice on behalf of good people everywhere. I was focused and disciplined and powered my way through college with that goal in mind even though somewhere around my sophomore year I was positive I did NOT want to be a lawyer. There wasn’t really anything else that came to mind so I just kind of closed my mind to it and kept going. I graduated in May of 1993. I was completely, utterly lost. For the first time in my life I really had no idea what was next.
I had some money from a scholarship that I received after my grades were turned in and I literally just lived from happy hour to happy hour, both struggling with the concept of “free time” and really enjoying it. I started drinking pretty heavy. On my 22nd birthday I was blessed to have many friends visit me to help celebrate and started the day early with a road trip to find a bar with “Juke Box Hero” on the playlist. I ended the day completely hammered and living out the song, “Jose Cuervo”. I kissed some cowboys, danced on the bar AND got in a fight. And I woke up with a really cute acquaintance who I vaguely remembered crying with… I did not remember being intimate with him. Even for all the drinking I’d been doing, I really had stayed more true to my values than that, until then.
Six weeks later I had to admit to myself something was wrong. The pregnancy test was absolutely devastating to me. My dad wanted to disown me, at least for a while. He was so disappointed. I was so angry at him and so hurt at how he treated me when I told him the news. My mom was sweet and supportive, but I was truly raw from the emotion and retreated. It took me a LONG, LONG time to realize that my anger really was toward myself. But that is another story entirely!
On the day that I heard my baby’s heartbeat, my life changed, fundamentally, forever. I fell madly in love with my child and knew beyond any shadow of a doubt that I would spend the rest of my days doing everything in my power to be a good mom. My life suddenly had incredible purpose. I got a job processing real estate loans, cleaned all the crap out of my fridge and started swimming again. I lived SO healthy. I exercised, ate very nutritiously and slept, a lot. I felt great and advanced in my job, getting promoted to loan officer in a short time. The day I was induced I got up and swam a mile before checking into the hospital. I was in labor for two hours and gave birth to my beautiful daughter, Jacquelynn Michele. My whole family was there and for the record, my dad was the most amazing grampa from the first instant she joined the world! Her birth dad was not interested in participating and I decided that I’d rather parent myself than have someone around her who made her feel like a mistake. She was most certainly not. She was a blessing straight from God; my angel, my saving grace.
I was determined to give Jackie the best of everything and not to be a burden on anyone. I took a better job, with full benefits, as a Real Estate Loan Officer for a local bank, got my own apartment and found a loving home daycare nearby. I worked hard, built my portfolio and nursed during my lunch hour, pumping during breaks. In the evening, I’d stay up late holding her and reading to her and singing to her and just watching her with awe.
I had some pain with eating and bowel movements but figured it was just everything getting readjusted from the pregnancy. I’m tall, and due to changing my partying ways and exercising had actually lost weight in my pregnancy. I’m one of those people who could have hid it the entire time – I never needed maternity clothes…she just fit around things. I thought maybe this was why I felt all scrunched up all the time. I started noticing blood with my stool, but chose to believe that it was from the hemorrhoids I’d developed in part cause she was born SO fast – and I had some tearing and things, too.
By the time Jackie was six months old, it was pretty painful to eat – and it was time consuming, too, so I just kind of quit doing it. Bowel movements were very few and far between and I dreaded them with my entire being as they were excruciatingly painful. The bowl was full of dark blood each time. I was exhausted but determined that I could do it myself. I did not need help. I quit nursing as I just couldn’t keep up the volume of milk needed. Jackie went straight to regular food and thrived.
Once a few more months passed, my mom was on my case – sure that I was anorexic. Every time I ate I had such horrific pain that it doubled me over. I went to some doctors to find out what was up and they tested me for things like worms; but generally dismissed it as postpartum depression. I must be depressed being a single mom after all! This annoyed me tremendously and basically strengthened my resolve to take care of my daughter myself – NOBODY gets to label me! When I think about how scared I would be as a mom if Jackie was so sick, it makes me really mad at myself for putting my mom through that time. She cared so much and I kind of pushed her away.
One day when Jackie was about 15 months old I was walking over some property with a developer who was interested in putting in a new subdivision. It was an important meeting with terrific ramifications for my career. All the sudden I could hear the commercial loan officer and the developer talking to me, asking if I was okay, but I couldn’t answer them or respond. I passed out right then and there. This was the push come to shove moment when I realized I had to find out what was wrong. The bank insisted on it!
A general practitioner in town thought a good place to start would be a colonoscopy so he sent instructions to the hospital and I did the prep and showed up to have the tests. The next day the GI office called. I wasn’t really even sure what a GI was at that point! I’d been healthy my whole life! And it wasn’t like now when you jump on the internet to research something…I know that ages me, but it wasn’t! I was exhausted and sick and trying to take care of my daughter, and frankly scared to know the truth so I was completely naïve when the lady on the phone said to come in because they had news for me. It sounded grim so I said to her, just TELL me!!! And she did. She said, “You have Crohn’s Disease.” I said what is that? She said, “well I don’t really know – I’m just a temp.” I said well you have to give me something more than that! She said, well let me look it up… “it says here that it is debilitating and there is no cure.”
I was devastated. Horrified. I think she knew then that she had said way too much and she started mumbling all this crap to make me feel better and then trying to cover her butt so she wouldn’t get in trouble. Anyway, at that point I did the research. I learned as much about it as I could and knuckled down to get it under control. It was a lot of medication and a lot of time getting better, but I managed.
During this time I met my husband. He was sweet and made me laugh. He made me feel like a human again and he was wonderful to Jackie. It felt good to have someone to talk to and be an adult with. We dated for two years and got married when Jackie was 3. He adopted her and we were pretty happy. I will say that even before I married him, I knew he was an alcoholic. I don’t like to admit this, but it has been part of my healing. I let it go because I had gone through a time when I drank too much and I quit. Part of me just believed he would, too. And also, I believe alcoholism is a disease. I too had a disease. He was helping me cope with mine, and I would in turn help him cope with his.
Once I had been in remission for about a year, we decided to have a baby together. We became pregnant right away. I was so excited. At 10 weeks I had significant spotting and an ultrasound revealed that the fetus was lost. I underwent a D&C and thought I would die from the sadness in my heart. I didn’t think I would ever recover. I was able to become pregnant again pretty quickly and I know now what an incredible blessing that was. My sister told me later that she thought Dylan just needed a little more time…I like that.
Unfortunately, I started having Crohn’s symptoms again and a trip to the GI revealed that I was indeed out of remission. I was devastated. I was having to take hormones to keep the pregnancy viable as it was. Within a few months the Crohn’s was raging. I went to the doctor in November of 98 and was told that I needed to stop all activity if I was going to carry the baby to term. I quit my job on the way home.
I was NOT going to lose this baby. It was months of extreme pain, lots of medicine I didn’t want to take, but no real options. I was terrified that I’d either lose my son, or he’d be born horribly disadvantaged because of me. Financially, I had to find something to help with the bills and I was fortunate to get hired by an internet ad tracking company out of New York. Weird, and random, I know. I consider it another amazing blessing. After a couple weeks I was promoted to full-time and started receiving benefits. I lay in bed and worked and it helped some of the stress. Poor Jackie would cuddle with me and we’d do our best to play and read and have some happy times.
Dylan was born on February 12, 1999, almost 6 weeks early but healthy and with all his fingers and toes. He was beautiful and such a perfect little angel. Once again, I had been blessed immensely. He had to be weaned off prednisone because of my meds and had a little jaundice, but his lungs were strong and when he looked in my eyes, I knew that he and I were going to be fine.
From the beginning poor Dylan had GI issues. He threw up every single time he ate for a year. Because of research I had done about nursing and its relationship to Crohn’s, I was adamant about nursing and my milk was the only thing that he could keep in enough to be able to grow so for a year, that was all he had.
I continued to struggle. I lost weight, lost strength, lost energy. My husband turned to drinking. Jackie grew up a lot. She ended up taking care of Dylan and I quite a bit at the tender age of just 5 – 6 years old. She would get my meds for me and make me tea. We continued to spend a lot of time playing in bed – games, reading, telling stories. Going to the park – impossible; even though it adjoined our back yard.
When Jackie was at school and Dylan was sleeping, or often in the middle of the night, I’d work my internet job. This is an important part of the story because I don’t think people always consider the toll that chronic illness takes on ALL aspects of a family. Financially, we were devastated. Though I had insurance, the company was based out of New York and I lived in Montana – everything was out of network. I worked throughout my illness and we held things together all the way up until the divorce when ultimately it all collapsed around me. It’s a horrible “side effect” of chronic disease! And frankly, it did not help Scott in dealing with his alcoholism. All these things - financial insecurity, my fears and physical pain, having two small children, not being able to CURE me OR to fix any of it OR to just get away and have a break once in a while, added up to way more than he could handle. So he drank the pain away.
My family helped how they could through this but they lived five hours away. And once again my fierce independent streak reared its ugly head. I didn’t want to admit that I couldn’t take care of my family, OR frankly that I had not made a good choice when it came to my marriage. To be fair, I think Scott tried. He made dinner, grocery shopped, helped with laundry and things. He still could make me laugh. I did love him. I wanted it to work. But ultimately, I let it go on too long. I didn’t reach out to my family and I think in retrospect that hurt them, too. They needed to be able to help and I didn’t really allow it much. Shutting them out made it harder for everyone.
By the time Dylan was a year I was so sick that I started obstructing on a fairly regular basis. Dylan was weaned pretty much overnight. I went to the hospital, he went on regular food. Fortunately, and here’s another blessing, he finally took to it – just when it really was a must. I should explain that I have never had diarrhea with my Crohn’s. I go the opposite way – my bowels don’t spasm, they stop. Nothing goes through – they just swell shut. I’ve had dozens of obstructions. I go to ER, they put the NG tube up my nose and down my throat and basically rotoroot the blockage, then its lots of meds, IV nutrition…it was a vicious cycle for quite a while. Around Christmas that year I noticed this large lump on my abdomen, it was like a baseball. It was an abscess. That took a couple weeks to drain. That was followed by a rectal fistula. On Dylan’s birthday I was let out of the hospital to celebrate with him. I remember all the family being there and how I looked forward to his party. And then how heartbroken I was that my pain was horrific, I was too weak to lift him up. I was back in the hospital with another abscess the next day. After several days I was sent home, again.
Somewhere in this time I got a call from Jackie’s best friend’s mom. She said, I don’t know how to ask you this, but Jackie’s been talking to Brooke and she’s pretty upset….Are you going to die? It was horrible. I had to sit down with Jackie and look her in the eye and tell her that I and the doctors were doing EVERYTHING we could to get me better. I told her we just had to pray with all our hearts.
She was at school one day shortly thereafter and I was home with Dylan by myself. Scott had gone to work just down the road (another blessing as he often worked out of town). I started having horrible, horrible pain. I was blacking out. I couldn’t find the phone. I was worried about keeping Dylan safe. He was just crying and crying. I couldn’t stand up or crawl or move. I just kept trying to calm him. I had been working so had a piece of paper and a pen and started writing a “goodbye, I love you” letter to my kids. Then the phone rang and it helped Dylan to find it. He brought it to me and it was my mom. She was calling from a meeting in Helena to check on me. THANK GOD, what a tremendous blessing! I’m sure I scared her half to death. She got a hold of Scott who had me in the car on the way to the hospital within minutes. My mom met us shortly later – man she had to have flown to get there so fast. I remember it hurting so badly and my mom trying to get someone to help me. They had me drink some dye and were waiting for it to get down where they could see it and I was hurting so badly – the morphine didn’t begin to cut it. Finally someone realized the dye wasn’t going through because it was spilling all over my abdomen, I had perforated.
So, it was emergency surgery. I remember my doctor telling me that I may wake up with a bag. I remember telling him that he could cut off my arm as long as it stopped the pain and kept me alive. I ended up with two resections at the same time totaling about 3 ft. I had another surgery a couple weeks later to repair a rectal fistula. After that it was about a year before I felt human. I went through depression and actually got on meds for it which I highly recommend. It gave me the boost I needed to get through the worst and I was able to get off it quickly once I had my footing. I saw naturopathic doctors and put together a whole package of nutrition, massage, homeopathic meds and traditional meds, along with exercise and finally Remicade infusions which ultimately led me to remission.
Since then, I have been grateful for every good day. I have had no more major flairs, though like so many I experience significant fatigue and have had many times when I get minor issues. I have arthritis like pain in my knuckles, elbows and knees especially. I got shingles. I had a growth on my eye that was Crohn’s related. I continue to get Remicade infusions every eight weeks and I’m so grateful. I almost always feel myself breaking down near the end of the time and know that without it my quality of life would not be so good. I run because it keeps me regular and it frees my spirit. It’s my time. I run because I can.
I will stop here because I know that you are all probably exhausted from reading it! You heard a lot of my story from this point on the motivation recording or you can read it through my blog. I didn’t start doing Team Challenge or getting involved with CCFA for me. I did it for my brother when he became ill and I’ll continue to do it for him and for my son and for all the people I’ve met on the journey. My illness was very difficult for a very long time, but it gave me strength, taught me a lot of lessons and I believe paved the way for the very, very strong relationship that I have with both my kids. It helped prepare me for other battles, including my eventual divorce, the pending foreclosure of my home and worst of all the diagnosis of my son with the same disease. I still dream BIG, but it helped me reevaluate my goals, base them on things that give purpose to my life and to appreciate so much more than I ever did before. I’m still a lucky kid…okay, well maybe not a kid! But honestly, I’m way more a kid at heart than I was when I was constantly burning the candle at both ends doing everything I could just do to say I did! I wouldn’t “give back” my Crohn’s if I could. It’s part of my journey.
