Living with a Chronic Disease

Hi All! My name is Lise-Anne, and I'm 29 years old. I have been healthy my whole life, no hospitalizations, no surgeries, nothing out of the ordinary besides a regular cold and the occasional bronchitis. Up until about 18 months ago. It was three days before my March 3rd wedding in 2012. I work in a hospital and there had been a stomach flu going around, so I was of course completely paranoid to get it. I drank a cocktail of Emergen-C everyday and took multiple vitamin C tablets for weeks before the wedding in hopes to stave off the stomach bug. All was going well, and a few days before the wedding I started to have some bowel issues, but I chalked it up to nerves, and maybe a touch of the stomach bug. My wedding went off without a hitch and everything was fine, so I didn't give it a second thought. So, life was going normal for a little while after that, but I noticed that I was having some trouble with multiple trips to the bathroom, and frequent diarrhea. Since I wasn't the type to go to the doctor or get sick very often, I thought I would try to eliminate dairy to see if that made a difference. I was thinking that I was just Lactose Intolerant. Well, this helped to eliminate the symptoms to an extent. After a while, I noticed that it didn't seem to matter what I ate, I was having chronic diarrhea everyday, multiple times a day. At this point, I decided to go and see my primary care physician in hopes of figuring out what was going on. (You have to understand, I am a bit of a hypochondriac, and had already diagnosed myself with what I had thought were gallbladder issues via WedMD, since this runs in my family). The physician felt my belly, and did some bloodwork. She recommended that I try a Paleo diet to see if that helped with anything. All of my bloodwork came back normal at that time, no vitamin or enzyme deficiencies. I attempted the Paleo diet for a while but did not notice much of a difference, so I just went back to Lactose free. The symptoms continued on a daily basis, and I was starting to stress out about it. I found another primary care physician and decided to try again. This was almost a year after the symptoms had started. This physician did more bloodwork, and referred me to a GI specialist. Again, my bloodwork all came back normal, no signs of an inflammatory response or vitamin deficiencies. So, we thought that it might be stress related. The GI started me on Lexapro to combat the anxiety. I tried this approach for about 3 months, and I was still not seeing any symptom relief. So I went back to my GI and he recommended a flexible sigmoidoscopy. I was hesitant as I had never had any procedures done and I was nervous about what he might find. After the flexible sig, he determined that I did have some inflammation in the lower intestine and the biopsies showed some granulomas, which is often a sign of Crohn's Disease. He recommended a Colonoscopy and I resisted, thinking I could manage the symptoms with over the counter meds. (Imodium-D). Well, this obviously didn't work either. At this point we had scheduled an abdominal CT with contrast to see what was going on. The CT showed inflammation in the Ileum. I was still resistant to the Colonoscopy. At some point after this, it's still kind of a blur, I began to have debilitating stomach pain. I couldn't stand up straight, and I could barely get through work. I would come home and lay on the couch at night writhing in pain. I was on a steady regiment of Advil and my heating pad. I wouldn't eat, for fear of more pain. At this point I called the doctor, and set up the colonoscopy. He started me on Entocort about a week before the colo, and thankfully this did provide me some relief from the pain. So, after the miserable prep for the colo (I'm sure some of you know what this is like), I went in. When I woke up, the diagnosis was pretty much confirmed, with the exception of the biopsy results. I was in panic mode. OMG, I was just diagnosed with a chronic, lifelong disease that has no cure. This was in October 2013. The doctor started me on the drug Lialda, which seems to keep the symptoms at bay for the most part. This has been an 18 month journey of pain, fear of the unknown, and acceptance of this disease. There are still days that I forget I have this. I wake up in the morning and don't remember that I am living with a chronic disease. I go over to a friend's house and eat something I shouldn't, forgetting that my body doesn't digest things like it used to. The next day when I wake up I remember that I have Crohn's, because most of the day is usually spent in the bathroom. I live with the fatigue that this disease causes, and I take my medications everyday. I laugh about my frequent bathroom runs with my friends, because it makes me feel normal. But to really understand this disease, you have to be living with it. I have accepted the fact that my digestive tract will never work properly again, but that doesn't mean I don't test the waters all the time, just in case I might be able to eat something that I shouldn't. But, my body never fails to remind me that the Crohn's is there. I live with fear of the future, fear of surgeries and infertility. I get up and go to work in the morning, and hope that the fatigue doesn't affect me too bad, and I can get through the day. I live with taking medications everyday to keep the symptoms from flaring, and hope that the medication keeps working. I live with fear that one day I will wake up and this disease will take over my life. I live with a chronic disease. I live with a chronic disease, but I am hopeful. I am hopeful that one day there will be a cure. I am hopeful that regular exercise will help with my symptom control. I hope to one day be someone that can help others to get through this disease. This disease DOESN'T control my life right now. I still do the things that I love. I make jewelry, I go running, I spend time with the people that I cherish, my husband, my friends and my family. My support system. They are 100% behind me, and accept me for who I am, even with some pretty crazy bowel habits. I laugh when things are funny, and cry when things are sad. I think about my disease a lot. When I get overwhelmed, I pray. Because I know that this is in God's plan for me, even though I get frustrated with Him for giving this to me. I appreciate this forum, because I haven't had the chance to tell my story until now. I hope to make some friends here. We live with chronic diseases. But we are still living! Keep the faith!

Hello and welcome to the forum, you mentioned you hope to meet friends here and that is definitely something that will happen, there are so many amazing people in the forum with inspiring stories to tell.

I'm sorry that you have had 18 months of trouble but at the very least you now have a diagnosis and can look towards a treatment plan with the aim of getting into remission. I do understand your concerns about having a lifelong illness, its something that takes time to adjust to and you will. Everyone is different in their journey with crohns but we all understand what you are going through and we are here to help. Please feel free to ask any questions you may have as there is usually someone that knows the answer.

I really just wanted to welcome you to the forum, I'm glad you've joined us but sad you had to.