Ginger’s Family’s Story

Five members of Ginger’s family live with IBD –pictured are son-in-law Robert, grandson Aiden and Ginger. Matt, and daughter Heather.

Robert’s Story
I was diagnosed with Crohn’s at age 8 and had a bowel resection surgery when I was 12. I took mesalamine, prednisone, mercaptopurine, and ranitidine. The constant doctor appointments, tests, and medication was a lot to deal with at a young age. While I have always tried not to let this disease define me or prevent me from doing something, it has created hurdles in my life. There are certain foods I cannot eat and drinking alcohol is not something I do on a regular basis because of the pain it causes. With my shortened bowel, there are times that things move through me faster than I would like. As long as I keep my stress level down, I typically feel good, but do have times still when I get intense stomach pains. I currently only take a supplement as my treatment.

Aiden’s Story
Aiden was diagnosed with inflammatory bowel disease in December of 2017 at the age of 9. It was pretty devastating for us as parents when he started having symptoms, because we knew with our combined family history that it was pretty likely that he would end up having either Crohn's or colitis. He currently is considered to have indeterminate colitis and receives infliximab infusions every 7 weeks. Infliximab infusions have definitely helped him start to grow and gain weight, although getting them is not something he looks forward to. He's been getting his infusions since January of 2018 and the last time they checked his drug level (just two months ago), was the first time that he was in the therapeutic range. Luckily he wasn't having any symptoms during this time when his drug levels weren’t in the therapeutic range. He has pretty much been considered in remission since he started getting his infusions. However, his body can tell when it is time to get his next infusion, because he tends to get stomachaches a week or so before he is due. Otherwise, he is currently doing well and has no limitations as far as food or activity goes.

Ginger’s Story
I started having symptoms in January of 1999. I was diagnosed with Ulcerative Colitis in May of 1999. I started on mesalamine and prednisone, but they didn’t really help with the symptoms. After returning from vacation in July, I was hospitalized for the first time for about 5 days so I could be put on IV prednisone. I have taken just about every oral medication – including one from Canada, but nothing really put the symptoms in remission. The pain I’ve experienced since the beginning has never been under control. Due to switching jobs and a change in insurance, I was unable to afford my medication, so I had to discontinue taking it in 2001. My diagnosis was soon changed to Crohn’s disease after I was hospitalized for the second time for 10 days. I started on a biologic medication IV infusion in 2002 and took that for approximately 5 years when it stopped being effective. I then started on another biologic, adalimumab. Still, my disease was not fully under control, and in July of 2007, I had a partial colectomy and now have a permanent colostomy bag. I continued using the adalimumab until about 4 years ago, when my insurance company would no longer cover it. I now receive infusions of vedolizumab, a biologic medication, every 4 weeks. I had to have a port put in because my veins couldn’t deal with being stuck any longer. I’m not on any other medications at this time besides the biologic. I do still suffer from the abdominal pains on a daily basis, but there hasn’t been anything so far that will help ease the pain at all.

Matt’s Story
I was diagnosed with Crohn’s in June of 2007, two months before moving to California to join a performing arts group that travelled internationally. I was nervous at first that I wouldn’t be able to move out or go on any of the international trips but luckily my doctor found a combination of medicines that got my symptoms under control pretty quickly. Compared to my mom, sister, and brother-in-law, my symptoms have been very mild and I haven’t had many issues. When I turned 26 and could no longer stay on my parents’ health insurance, I had to stop taking my medications because I couldn’t afford them, even with my work’s health insurance. I did what I could to manage my symptoms with my diet and avoiding stress as much as possible. I’ve felt great since and hopefully things stay going well from here on out.

Heather’s Story
My symptoms began my freshman year of high school in October 1999 with bloody stools and extreme abdominal pain. In November I was diagnosed with UC, but my diagnosis has since changed to Crohn’s disease. I have tried many medications, including prednisone and mercaptopurine. I was taking 30 or more pills a day at one point. One medicine depleted my immune system so badly, I couldn’t go to school, so I had to teach myself from home for the last half of that school year.

Unfortunately no prescription med helped, and I got so sick that in April 2000, I had my colon removed. My second surgery was in June 2000, to reconnect my small intestine and remove the ostomy. After this, I had little control of my bowel muscles so I had to wear diapers or incontinence pads all the time and had to go to the bathroom frequently through the day and night. In addition, the bloody stools and abdominal pain continued. In December 2001, I had my third surgery to make the intestinal pouch larger and had another temporary ostomy. My incision got infected and I became very ill, resulting in more missed time at school. My fourth surgery was in June 2002, to reconnect the small bowel again. I still had little control of my bowel so I continued to have to wear the diapers and use the restroom 15 or more times per day, as well as still having bloody stools and extreme abdominal pain.

High school can be hard under the best of circumstances, so dealing with this disease in addition to that was very difficult. Because of this, I struggled with depression and suicidal thoughts as well. During this time, my doctors continued to try other meds, including infusions of infliximab, to treat the disease, but still nothing helped. I got so sick that I was only able to attend school for about a month of my senior year. I wasn't even able to attend my high school graduation ceremony in May 2003, which was one "normal" high school thing I really wanted to be able to experience. In June 2003, I had surgery number five to have a permanent ostomy formed. I've had complications since then like scar tissue and continued chronic abdominal pain that required other surgeries and treatments. But my Crohn’s has been in remission and I haven't taken meds for it since I got the permanent ostomy in June of 2003.