History and Living with Crohn’s Part 1 - History

Have you felt slightly off but can't put your finger on why? You don't feel bad, you don't hurt, but you don't feel great. That has been me most days of my life. I was diagnosed with Crohn’s Disease in April of 2023. Most people would think of this a a burden. I was so unbelievably relieved that I cried. Having a diagnosis and plan to deal with this disease lifted an unimaginable weight off my shoulders that I didn't even know I was carrying. This is my story on some of my health history and how I am doing now and my hopes for the future.

At around the age of 10 my family and I started to notice I would have to use the bathroom quite a bit. I had a pretty heavy dairy diet with milk and cheese almost daily. So we decided to cut dairy out as we thought I was lactose intolerant. Changing to this type of diet seemed to help and the amount of time I spent in the bathroom went down. We all thought this was the issue and so we moved on. That would be a really simple and boring story right.

Well I kept up with this diet for the most part. In small amounts, cheese didn't seem to bother me as much so long as it wasn’t sharp or american cheese. Mozzarella and colby jack seemed to be fine in moderation. So I kept this up into my 20’s. I was “going” 4-7 times a day. I never heard that was a bad thing so I never thought twice about it. I did ask my doctor during one of my annual check ups about what a normal amount of times was and he said 2-4 times is pretty normal. If I'm going more I might have IBS but I wasn't going that much everyday so I still figured it was lactose.

Around the age of 21-22 I started to get Kidney stones. Again my diet was pretty poor and I ate a lot of fatty stuff and a lot of soda. So once again I went to the doctor and I was able to get a couple stones over the course of a year to get tested. One was mostly made of Calcium, the other was mostly an acid stone. From the test we could not determine the cause of the stones. During the diagnosis stage I cut out red meat, pork, and soda. I went very clean and actually lost a good amount of weight.

But over the course of the next few years I was still making stones. I tried every diet under the sun at the time that had anything to do with preventing kidney stones. It didn't matter what I did. I always kept flomax and norco with me just in case. Having this constant fear of a stone was such a heavy burden that I didn't want to do many things. At any moment I could drop to my knees in pain and potentially have to go to the hospital. I did this all the way up to my Cronhn’s diagnosis. I still carry norco with me out of habit. Something I will probably do forever.

At 24 I was at an internship with Ford in Dearborn. I had been feeling extra off for weeks, I had general pain in my abdomen and I was starting to worry it was my appendix. With about a month left of my internship I went to my doctor again and he sent me for an FMRI to see if my Gallbladder was the culprit. During the test I got to watch the screen. I didn't see anything happen and I remember asking the tech if that was normal. They said that they are not experts and we should just wait for the experts to give us the results. The next day I got a call from the doctor stating I should go straight to the ER for emergency surgery. My gallbladder was working at 2%. They like to remove them at 10% functionality.

At this point I had about 3 weeks left and I wanted to finish my internship. So I told them I will schedule it for the day after my internship. Well, I made it a week. I couldn't take the pain anymore. I packed up my things from the apartment and I headed back home and went straight to the ER. They took me back after about 30 minutes. That was by far the fastest I had seen since my knee injury as a young teen. This is also when I found out I have pseudocholinesterase deficiency. This means I lack an enzyme that breaks down certain medicines that are used in surgery for a temporary paralytic for when they give you a tube for air. I was chemically paralyzed for 10 hours.

The surgery only took about 45 minutes and every 30 minutes after the surgery they tried to bring me up to see if I could move again but couldn't. After the first attempt they knew what was going on and gave me something to counteract the paralytic. But it took almost another 9 hours for it to work. Most people do not remember the attempts to bring you back up from being knocked out. But my beautiful mind remembers every attempt. The feeling of not being able to move still haunts me to this day and I have dealt with it but it still sticks with me. But dealing with this is a time for another story.

So after having my Gallbladder was removed I was told I could have some issues dealing with fatty foods. This makes sense since that is what the Gallbladder helps with in the digestive tract. So my 4-7 times a day did not change. If you are like me you are starting to see a pattern of reasonable explanations as to why I was going so often. First lactose, then no Gallbladder. Perfectly reasonable explanations as to why I was going so often.

Another issue that also led to my diagnosis was around the ages of 28-30 I started to get episodes of Gout. Yet another issue that can arise from a poor diet. I had swung back to eating a lot of red meat and soda since it didn't matter what I ate for my body to make Kidney stones I said screw it and eat what I want. My first episode I had no idea what was going on. My left foot was a little sore and swollen when I went to bed. I had hurt it a little earlier in the day exercising so I thought it was just a light sprain. I woke up unable to put any weight on my foot and it had ballonded to 4x the size of my other foot. I happened to be home visiting with my family and I had my mom take me to urgent care.

When I saw the doctor they knew exactly what it was and gave me a shot and a prescription to help. I have had a few more bouts over the last 3-5 years but each time I took some meds and got my foot back to normal in a day or so. Gout was yet another underlying condition that led to my diagnosis. It was actually my last episode that led me to this diagnosis.

In March of 2023 I had another episode. I started to take my medicine for it and after a week of only keeping the swelling at bay and not improving I went to the doctor and they sent in another prescription to help. The combination of both medicines caused blood in my stool. I read up on both and neither alone could cause this side effect but I called my doctor and they scheduled a colonoscopy.

After my Colonoscopy I spoke with the doctor. He found inflammation in my intestines and colon. He scheduled some blood work and a CT scan. After the blood work and results of the CT scan they were very confident I had Crohn’s Disease. When I heard the news at first it was a shock. I didn't even know what Crohn’s Disease was. After learning more about it and some of the underlying conditions everything made sense to me.

Crohn’s Disease causes inflammation in your digestive tract. It can inflame any part of it. Some conditions that go along with it are of course IBS, and little did I know, Gout and Kidney stones, among others. Once I learned this everything made sense. No matter what diet I tried for Kidney Stones and Gout and it not making any difference finally made sense. Knowing the underlying cause and now knowing what kind of diet and treatment plan were such a giant relief I cried a bit. After literally my entire life of constantly having no idea why my body was always either hurting or just not 100% was just an immense amount of relief.

I am now on a Crohn’s Diet and I get bi-monthly infusions. My gout and kidney stones have not returned since the change. The diet definitely took time to get used to. Finding out alternatives to my favorite foods, and also finding out that I can handle Bison as a supplement to cow meat was a massive relief. I do eat a lot of chicken and turkey. I miss pizza like crazy but that price is more than worth it since I can finally not have stomach issues. Not to mention now that my digestive tract is going at a normal pace my Iron, Vitamin D, and other levels are improving. One thing a lot of people don't realize that living with a condition that makes you go a lot can mean your body does not have time to absorb everything it is supposed to.

This has been the history portion up until about May 2023. I will continue this story for the last few months soon. There has been a lot of learning and pain since my diagnosis but I know that I am doing well and have a plan to keep improving

Thank you for Reading and leave a comment!