Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting. For those who know me, or not, I must admit I am a pretty private person. Most people know me from working at the pharmacy while others may have seen me at the hockey rink with our son. Besides work and hockey, my life is pretty much my family who means the world to me. I am a homebody but this hasn't always been the case. Alot has changed for us the past few years, most noticably my health. Nearly 3 years ago, I was diagnosed with Crohn's Disease. I am thankful to get a diagnosis, because many individuals go many years without one. For those who may not know, Crohn's Disease is a form of IBD and autoimmune disorder. Basically my immune system attacks any part of my digestive track ranging from mouth to anus, but mostly the large and small intestine. When I am in a flare up, symptoms include nausea, uncontrollable vomiting, diarrhea, bloody stools, mouth sores, severe abdominal pain. Other issues include blurred vision, headaches, muscle/joint pain, chronic fatigue, intestinal abcesses, and suppressed immune system due to the medications I have to take. Over the years I have had to completely alter my diet (learning what I can and can't eat), how to slow down, and how to truly listen to my body. The road to where I am today with the disease hasn't been an easy one. Like I said, I am so thankful to actually have a diagnosis. March 2017, I contracted a rare form of Ecoli virus that ruptured my appendix (but wasn't caught initially). I spent nearly 3 months in and out of the hospital and ER seeing several specialists before they finally realized what was going on. I was rushed into surgery where they discovered my appendix had ruptured and had sealed itself to my ovary. They removed my appendix, tube/ovary and performed a pelvic flush since my organs in my pelvic cavity had been sitting in the infection for months. Unfortunately, this ruined the rest of my reproductive organs so I no longer could bear children. After healing from surgery, I was still dealing with severe abdominal pain and nausea. Further test concluded I had Crohn's. It was severe enough that I was started on biologic therapy injections and steroids immediately. This helped for roughly 11 months when symptoms returned. I had learned that my biologic was no longer helping and would need to change therapy since my insurance wouldn't cover the therapy increase. I then was changed to a different biologic through infusion. The worse thing about biologics is that it can take anywhere from 6 weeks to 1 year to determine if they are helping or not, so it can be a very slow and long process. In July 2019, I was referred to the Mayo Clinic which has been a blessing. I have seen several different specialists who have helped me so much in my journey. In October 2019, I had a robotically assisted hysterectomy to try and help with other issues that caused continuous problems with many of my systems, including digestive. I was also informed that I was back in severe flare status and its been recommended by multiple specialists that I plan for surgery to removed the thickened part of my small and large intestine (which they wanted to do right away). This explained why my intestine inflames so bad that it closes off during flares when aggrivated. The only fix to this is to cut out the thickened areas and then continue with medication after in hopes to one day reach remission. I knew surgery was in my future based on the disease statistics, but I didn't anticipate this soon. I explained that I was trying to hold off on surgery for 6 months to a year just to prepare, but I've been warned that waiting may not be an option and needs to be done sooner than later. I also was informed that my current infusions are no longer helping enough so I know another change is in my future. I also am at extremely high risk for a bowel obstruction at this time. 3 weeks after hearing this, on December 23rd, I ended up in the ER with a partial bowel obstruction. I lucked out and survived through, but was set up to meet with the Mayo surgeons as soon as I was able to. That really put a scare on the reality of everything. I wouldn't be where I am right now if it wasn't for the support of my friends and family. My amazing husband and son have been right by my side throughout everything and has had to sit and only comfort me during the hard times. Everyday is a blessing even when its a trial. I can't lie and say that these few years haven't been more mentally, emotionally, and physically trying than anything I have ever dealt with in the past. Over the years we have made more trips than I can count to Grand Forks for specialist visits, treatments, tests, procedures, etc. Now we can add nearly a dozen trips to Mayo in Rochester and many more to come in the future. Its may not be the life that we had planned for, but it is the life we have been given, and frankly I'm just happy to be alive. I hope to use this site to reach out a little more, share more thoughts and stories about what is going on as to raise awareness to underlying illnesses that we often try to hide.
Im so happy to report surgery yesterday went very well! They removed the diseased and damaged section of my small bowel, ileum, and colon. They were happy to see that they didnt have to remove most all of my colon as they originally thought! There was also good tissue to reattach small to large intestine so they were very happy with the results. The entire surgery took about 3.5 hours since they were very thorough and cautious. One neat thing was that they sedated me beforehand and gave me a spinal tap with medication that pretty much numbs the organs for 24 hours to help with pain post op. I was pretty wiped out yesterday but did much better with the anesthesia than I did in the past which was a huge relief to me. I was even up walking lastnight before bed and had a bowl of tomato soup! I'm so thankful for the entire surgical team I had as well as all the wonderful nurses I've been in contact with. This has been such a blessing and I tear up just thinking about recovery and a hopefully healthier road ahead. My goals today for here is to get up walking more, working on pain management, and a bit more food intake. It has been tough not having my husband or son with me but thank God for text and phone calls. They are the real heroes always being on my sidelines just trying to help and support anyway they can. I also have such an appreciation to Mayo for keeping close contact with my husband before, during, and after surgery as well as my surgeon (who happens to be the head of the board of the GI surgical department) calling my husband right after surgery and letting him know what they found and how it went. I am truly blessed to be in such a good place, and surrounded by support of family, friends, and community. I appreciate each and everyone of you! Thank you for all prayers!!!
Patients and caregivers love hearing from you; add a comment to show your support.
Help Amanda Stay Connected to Family and Friends
A $25 donation to CaringBridge powers a site like Amanda's for two weeks. Will you make a gift to help ensure that this site stays online for them and for you?
