Crohn's and Gastroparesis: Learning How to be a Fighter
By: Anna Holcomb
Companion Magazine Contributor
My name is Anna and I have Crohn's and Gastroparesis. I began to see signs of Crohn's in 2007. I was losing weight without trying and had abdominal pain. I attributed this to poor diet.
Then the day after my 25th birthday I began to vomit with blood in it, and the abdominal pain was severe. I went to my primary care Dr and she said I had too much to drink on my birthday. I spent 4 days in bed in severe pain, still vomiting blood. I had my boyfriend Rob take me to the ER. They gave me a GI cocktail, ran a CT and did an abdominal X-Ray, they said everything was fine, I was sent home told to drink Maalox and take Tylenol.
My Dad came over the next day to see how I was, I was curled up in a ball crying. He called my Mom and they took me back to the ER. My blood pressure was so high from the pain, I was instantly taken back and given IV pain medication, they admitted me to the hospital for 3 days,
I had another CT, ultrasounds done of my kidneys and ovaries. Everything looked okay so again I was sent home. I was in and out of the ER and hospital many times over the next two months.
Thankfully I had a very understanding boss and helpful coworkers. Finally during one of my hospital stays a GI Dr was called in to see me. When I was released I followed up with him. He ran more tests, CT, MRI, MRE, colonoscopy, endoscopy, and some tests I don't remember the names of. The colonoscopy did show some inflammation, so I was put on prednisone and Pentasa, a couple weeks later I was started on Remicade.
This kept me out of the ER, but I continued to have problems and continued to lose weight. I was unable to eat solid foods. My GI recommended I see a surgeon just in case I needed one. I met with the surgeon and he decided to go ahead and do exploratory surgery on me in June of 2008. I was so sick of being sick I agreed to have the surgery.
He ended up removing 8 inches of my bowel that was 98% scar tissue shut. I didn't get a diagnosis of Crohn's until after my surgery. After a while, my life returned to normal, well my new normal. I changed my diet, I started taking better care of myself. We had to move into a smaller apartment so that I could pay off the medical bills that had piled up.
Because of my lifestyle change, I lost some friends, but my true friends stuck by my side. I adapted well to my new life.
In 2011 I married Rob. We bought a house and started planning on starting a family. Then in 2012, I began to get very sick again. I was losing weight, I couldn't eat solid food most days, I was vomiting undigested food I had eaten hours before, I was in pain 24/7.
My Crohn's GI ran all the tests as before, everything looked fine. My body had not built up antibodies to the Remicade. So again I underwent surgery, only this time nothing was wrong. I was sent to a research hospital at a University about two hours away from home. They ran a gastric emptying test on me, and I was diagnosed with Gastroparesis in 2013. I had already been put on phenergan for nausea, but I was vomiting 10 plus times a day,
I had to quit working because my weight was getting dangerously low, my Crohn's GI even wanted to put me on a feeding tube. For two years I saw the GI specialist every three months. After talking with others on Facebook in Gastroparesis support groups I asked the Dr to put me on dicyclomine for cramping. She didn't put me on any medications for Gastroparesis, only had me try diets.
Gluten free, low residue, simply carbohydrate, and food map, none of them worked, I continued to lose weight and vomit. My best friend talked with an acupuncturist about me and I began to see her. Another friend that is a massage therapist started doing Reflexology on me. Within a month of starting acupuncture, I was no longer vomiting. Reflexology allowed me to be able to eat more solid foods again.
After 2 years of not getting any relief from the GI specialist I was seeing, I was transferred to a Gastroparesis specialist in the same research hospital. He had me try azithromycin, megestrol, Marinol, scopolamine patches, and an acid reflux med. Only the Marinol helped, and it only helped with the pain I was having under my ribs. All the other meds made me nauseous. He told me I was running out of options to help me the last visit I had with him.
I begged to have the botox injections into my pylorus from my first appointment, he said that wouldn't help me. I left that practice after only seeing that Gastroparesis Dr three times over nine months. I did not like the care I was getting from him. I had learned to be my own advocate and knew he wasn't a good fit for me. I found a new GI Dr closer to home, he did the botox injection six months ago, it worked great.
I am able to eat even more solid foods, and larger meals. I just had the second injections in November. After I started acupuncture and reflexology, and I began to eat more I finally gained enough strength and was able to eat enough that I started taking yoga classes.
I was bedridden for almost two years, I lost a lot of muscle and strength. Yoga has helped me gain strength and build my muscles back. It also helps with digestion and anxiety. I love yoga! I try to go twice a week. My best friend joins me when she can, and my mom comes with me once a week. I am slowly getting my life back.
I am now able to spend the day at the lake or on the river with friends. I love being in and around water, it's my happy place. When I am not doing so well, I have friends that come over for movie nights, or just drop by for a little. I have an amazing support system. My husband and mom are my rocks. My friends never let me feel left out, or like I am alone in this fight. Even if I can only spend an hour or two out when I'm not doing my best, they still include me in everything. If I can't make it, they never make me feel bad. I 100% lucked out in the friend department.
Although my life has changed a lot, I have embraced my new life. I have learned that I am stronger than I ever thought I could be. Even though most people couldn't imagine fighting like I do. Yes I still have times where I can't get out of bed, but I always bounce back. I am a fighter!