My story with Chronic Pancreatitis
posted 2nd Jan
**I wrote this for a support group I am in. I want to post it on my profile so that others can read this and so that I can have my story out there. It's very long, so if you actually read this...kudos to you!**
I've had CP since I was 3, it is idiopathic (meaning they have no idea why I have it). They searched and searched for months and couldn't find a reason. They have tested my genetics and several other things and always come up empty handed. The doctors at Children's told my parents that usually 40 year old alcoholic men have this disease. I saw a Pediatric GI doctor (Adam Mezoff). He was great to me and handled my pancreatitis for 18 years until I started seeing a GI meant for adults and my pediatric doctor retired. I have pictures of flowers he sent to my hospital, balloons he sent to me when I spent my 16th bday in the hospital, and so much more!) He in fact bought me a tricycle and scrubs of my own to wear. At the age of 6, my mom no longer had to take me to the ER to get admitted. My doctor made it easier on all of us and told my mom to take me to the lab to get blood work and then after and hour we were admitted when in fact my enzymes were high. I had several attacks every other week when I was younger, as I got older they got farther apart and now I am to the point where the big attacks come every year and I deal with the smaller pain at home myself.
I do not have a gallbladder or appendix because when I was younger they decided to take them out and see if that would help. That of course didn't help and we were all at our wits end with my disease. My doctor sent me to IU for extensive testing and came back with no results to help. It was very disheartening for my parents to watch their young child suffer. I ended up seeing a psychiatrist at 6 years old because I had made comments about how I wanted to die and I didn't deserve to live and other things like that. My parents were scared at their young child making such comments but understood why I was saying them. They just wanted me to be able to talk to someone about those feelings because it was too hard for them and I can't blame them.
From age 6-12, I had attacks every other month and it was hard for me to be in school and make friends. My parents thought about home-schooling me or getting me a tutor but I demanded that I go to school like normal kids. Around age 13 my attacks slowed down and life got to a normal rhythm. I had my big attacks once a year and spent a week in the hospital recovering and then went back to what I normally did.
After I graduated and began seeing a different GI and going to the regular hospital instead of Children's, I thought things were going great. I had a job, I drove, I had friends who I could count on and I was with my boyfriend for 3 years. I was truly happy.
December 07, things changed drastically. I was thrown into an attack and it through me for a loop. I was very sick, in a lot more pain than normal. I left the hospital twice and ended up coming back only 24 hours due to the fact that I couldn't keep anything down and I was so weak. Miami Valley threw up their hands in Feb 08 and sent me to IU. They had no idea what to do, they had ran tests and could only find that my pancreas was irritated (which was nothing new).
I got to IU late February by way of ambulance, I was very weak and on strong pain meds. I had to drop all of my college courses. I was working on the base here and had to tell them I had no idea when I would be back and if I could come back. I was so upset, things were going well and I thought my pancreas attacks didn't behave like this. I was worried something else was wrong, my parents were worried that I had somehow progressed to having pancreatic cancer and that the doctors at Miami Valley were just not finding it. My dad and stepmother were having issues and my mother was the one who stayed in the hospital with me most of the time.
When I got to IU they ran a battery of tests. That is when my doctor from IU when I was younger came in, he showed us what we didn't want to see. He pulled up my cat scan to show that they were 7 balls in my pancreas, he explained that they were calcified cysts and that they were draining fluid and part of my pancreas was necrotic. My parents were stunned and asked how MV could have missed this, the doctors at IU had no idea. Then came trying to figure out a game plan, the cysts needed to come out but with my pancreas so inflamed it was not a good idea.
The game plan was to give me a feeding tube for a few months to get my pancreas to a better state to be operated on. I refused, after much coaxing and crying I decided to go ahead. I felt horrible my boyfriend and I were having issues, my now husband was being very supportive, I was only 18 years old, I was getting a feeding tube. I felt broken. I was depressed, I saw more psychatrists and nothing helped. They didn't want to me put on depression medication because they knew it would not help. March of 08, I was sent home with my feeding tube I spent much of my time in my bed in my room shut off from all people. My boyfriend (At the time) stopped coming to see me as much and I just felt like he didn't want to see me because of my disease. I felt like it ruined everything.
My dad and stepmom ended up separating and my father, sister, and I ended up moving an hour from where we were away from my friends but closer to my dad's side of the family who could help with me and my sister. My parents ended up seeing each other but making up excuses saying they were talking about me. My mom's son from a previous marriage ended up staying with me and my sister a lot and we all knew what really was going on. In March of 08, my parents admitted they were back together and my mom and brother moved in. I was happy to have my mom back in my life more permanently.
I spent a lot of my time going to appts at IU, spending time with family, and when he could find time my boyfriend would come by. My surgery date was set for late April and I was excited to finally be getting this over with. The plan was to take out the cysts and the necrotic part of my pancreas. Late April came and they decided that they needed to push my surgery back 2 weeks due to blood work that didn't come back all that great and my weight. They gave me more calories to feed through my J-tube I gained 5 lbs and my blood work came back fine in the beginning of May.
2 days before surgery my parents got a hotel for the 3 of us and we went to Indiana. My dad splurged and got me several new things and took me to the movies. I had so much fun the last few days and I knew all of us were nervous. It was great to spend time with my parents alone and to have us talk about what was going on in our family and with me. The night before surgery my boyfriend and his mom along with a bunch of my family came up to spend time with me, there were a lot of tears that night as well as praying.
I didn't sleep the night before surgery. Everyone else woke up at 5am and we went to get prepared. They took my contacts and everything from me but my gown, gave me some meds to calm me down, I said my goodbye's and went into surgery. It was a long 7 hours everyone said, it was supposed to be 5 but they ran into some issues. The surgeon took out my spleen to get to a part of my pancreas and it fell apart in his hand, things were a lot harder than they thought. I ended up with 40% of my pancreas gone and my spleen gone (my spleen was not in the plan!). I spent 5 days in the hospital after that and then went home to recover. I still had the feeding tube until they new that I had truly recovered.
I started getting stronger and stronger, by the end of May I had begun eating (small things at first) and I had gotten a little stronger. I couldn't be happier. By June, my doctor said he was very pleased with the results. The strain of my disease and cheating had ended my relationship with my boyfriend. I started talking to my now husband and he understood everything I went through and everything I would still have to go through. We went on our first date June 14, before my feeding tube was removed and I was thrilled. June 17, my feeding tube was removed at MV because it had come out, I was in a lot of pain. I was due to see my surgeon June 23, but he agreed to have it taken out early because it had basically come out of my stomach anyways. My stomach healed, my heart was no longer broken and life was good.
August of 08, I found I was a diabetic and that crushed me. I knew it was a possibility but I was hoping it wouldn't come to that. I was healing. I then had attacks once a year like before, my enzymes no longer were high when checked but scans showed inflammation. I had a boyfriend who understood me and understood that CP was something I would live with forever. I turned 19 alongside family and friends and my new boyfriend and felt invincible and blessed.
My parents got remarried April of 09, I got to be there at their courthouse wedding. I was engaged to marry the love of my life someone who stood by my side at a time I felt things were falling apart. I was completely healed. I got married June 09 and decided to TTC with my husband.
It took us a year and a half and many health hardships but we finally conceived Peyton Scott. We found out we were pregnant December 15, 2010 and it was confirmed by a doctor December 16, 2010. We were due August 13.
My whole pregnancy was spent worrying on how my diabetes and CP would effect my son and the pregnancy. I was completely healthy until the last 6 weeks in my pregnancy when the all too familiar back pain began. I was put in the maternity ward and put on a morphine pump that I worried about but knew I needed. I was put in the care of many high risk OBS and GIs. They found out that along with my pancreas being irritated I had Acute Fatty Liver Syndrome of Pregnancy, which happens with first pregnancies but is very rare. I went home with meds after spending 2 weeks in the hospital and 12 hours later I returned unable to keep down anything. I spent the last 4 weeks in the hospital with constant ultrasounds, slowly weaning of the pain meds, and constantly worrying about my son. The doctors decided the best thing would be to induce at 37 weeks (July 23, 2011).
My son had other plans, I started having period cramps July 21 (36 weeks and 5 days) early in the day around 11am. They hooked me to the monitors and found I was having contractions. I walked to help with the pain. The pain got worse and I lost my mucus plug. I started having some bleeding which the doctors said was fine. They checked me at 1:30pm and found I was dilated to 3. They sent me to L & D PICU to keep an eye on me, my contractions went from 4-6 mins to 1-3 mins. I had full back labor, they didn't check me anymore and kept telling me to stay on the monitor. I felt like I was dying and kept trying to get them to check me, they said I wasn't in labor just having pain from my pancreas. I knew this was different. Around 5-6pm after my husband insisted she check me she was surprised to find I was at a 6 and got me an epidural within 10 mins. Labor went rather quickly and by the time it was 12pm I was complete. It took forever for them to allow me to push, although with my epi I didn't feel anything. I started pushing at 2:15am and my son was born at 2:51am. He was born without any issues, except he did have jaundice and he sucked in meconium they had to suck out of his stomach. Unlike what the nurses and doctors said he was not addicted to the pain meds. All the doctors were surprised how fast my first labor was. The next day when asked how my pain was I told them I was only in pain from the labor and my pain from pancreas/liver wasn't there. 3 days later my son and I went home. I was no longer sick. I would've went through it all over again.
I just had my first attack this week since I had my son which was a good 8 months, I had some small pain issues but this attack was very bad and I couldn't handle it. I am due to see a new GI and I will be talking with him about different pain control options. I handle my disease the best I can but still wish my family members were more understanding. This disease is rough to handle but I do it all for my little man. I have been dealing with this disease for almost 20 years and I will not let it win. I will win. I want to try to raise more awareness to the disease. I want others to be knowledgeable about the causes, symptoms, and treatment. I want to feel like us CP'ers are not alone in what we deal with. There are awareness groups for all kinds of diseases and I feel like we should make this disease one of them! I am Amanda and this is my story.
**Thanks for reading, I know I added my labor/delivery story but felt that should be added due to my illness and trouble conceiving my son.**