My Younger Years: No Diagnosis
When I hit puberty, I knew I was just a little bit different than most of my peers. I had energy but not as much as most of my friends, classmates, and others my age. I was able to play sports with some friends, completed homework on time, and even added some extra fun activities just for me. However, I always felt tired…and it didn’t matter what I was doing. My grandmother would often question whether I had anemia and wondered why I was so tired all the time at my age. I would generally be careful because occasionally I would have off and on sensitive stomach attacks. I eventually went to the doctor, and they did some blood work on me. I found out I had an autoimmune disease due to elevated inflammatory markers found in the blood work done. The doctor could not pinpoint which autoimmune disease I had, and since I wasn’t displaying any really bad symptoms it was ignored as part of my medical history.
Autoimmune Disease but Which One?
This continued all the way to my college years when I went to see another doctor who found again that my inflammation levels were high. So, this doctor referred me to a rheumatologist, and I was so happy to go see this new doctor who possibly could give me some answers on what autoimmune disease I had. The rheumatologist tried very hard over a span of four years or so to give me the answers I was looking for. Unfortunately, he was at a loss and failed to provide me with a diagnosis for what autoimmune disease I had.
Around this time, I had developed sores on my legs that were warm to the touch, grew sensitive with time, and sometimes they would fill with liquid. I had no idea what was causing these sores. I had to keep them covered with bandages in hopes they would not open and leak out. I went to a dermatologist who didn’t know what these sores were, so they were biopsied. This was a painful process as they had to numb the nerves by needle with a numbing agent. They called it a punch biopsy. The dermatologist wanted to rule out cancer or infection. The sores weren’t cancerous and it wasn’t an infection. These sores were a mystery to my dermatologist and left me without any answers on what could be causing these sores. Later did I find that these sores are related symptoms of Crohn’s Disease, and only some people experience them with Crohn’s Disease.
So, I have Clostridioides Defficile AKA: C.Diff
Many years later, I was working in a pharmacy and contracted C.diff either from a patient or the community in which I served. I went six months ignoring my symptoms thinking it was just my sensitive stomach mixed with a huge amount of stress. By the six or seventh month I could no longer ignore it. I had lost so much weight, had little to no energy, I felt thirsty all the time, and didn’t feel right when I started to have off and on pain in my chest. One day I had enough and my parents took me to the hospital. At the hospital, I had been admitted and tested for what was going on with me. I was severely dehydrated and I had C.diff. I was quickly quarantined due to the severity of this infection and was considered a high-risk patient to spread the bacteria to others. I was put on heavy doses of antibiotics. Soon after I recovered a GI doctor was assigned to me and who pushed to do a colonoscopy.
Second Colonoscopy and the Discovery of Crohn’s Disease
My first colonoscopy was before my spout with C.diff, and the GI doctor didn’t discuss any findings with me, and so I thought I was ok. So, I lived my life as normal as possible but still had a sensitive stomach from time to time. Fast forward to after my recovery with C.Diff, and my second colonoscopy was performed. I discovered something wasn’t right with my GI tract, and I had severe inflammation in my intestines. It was so severe the GI doctor who performed the colonoscopy said she had to use a pediatric scope to view my intestines. At one point she had to stop the procedure because she couldn’t go any further with the pediatric scope. The doctor scheduled an in-office visit to discuss her findings and explain what she thought I had. She suspected I had Crohn’s Disease, but she wanted to confirm her diagnosis with UCSF. So, I made the journey to UCSF to confirm that I indeed have Crohn’s Disease and that all the signs and symptoms were there that were linked to the disease. Apart from being tired all the time and having a sensitive stomach, I also had been developing off and on sores on my legs that the dermatologist couldn’t figure out. The sores would develop as sensitive red blotches that would fill with a liquid and pop on their own. It was all coming together, the answers I was looking for, and the discovery to pinpoint what autoimmune disease I had.
Living with Crohn’s Disease: I Have Crohn’s Now What?
After discovering I had Crohn’s, the GI doctor needed to come up with a treatment plan for me to help eliminate most of the inflammation in my gut. She explained that I would have to be put on biologic medication. During this time, I had to take a leave of absence from work and go on short term disability while trying to recover from many problematic symptoms I was having. So, I started with a self-injectable form of a medication that had good reviews on treatment for Crohn’s. However, the auto injector was hard to use and very painful. I went back to my doctor and told her that the medication wasn’t going to work for me. So, a few months later I was put on a medication where I had to go to the hospital to have it administered to me through IV. It took months later because the doctor’s office had to fight with my health insurance company to get the mediation covered. I had many sessions and learned the process of administering the medication through IV was called infusions. The medication was working and I was able to get off disability and go back to work.
A few years later, I had to find a new GI doctor due to an accident that left my GI doctor unable to practice in the way she wanted to. I was devastated. I really enjoyed having this doctor as my GI specialist. Also, around this time, I had been experiencing some troubling symptoms that were returning. I found a new specialist and was told the biologic I was taking wasn’t working anymore. I was told I would have to switch to another biologic. The new biologic was again a self-injectable form of medication. I was nervous based on past experiences. It ended up not being so bad. I was able to tolerate and self-inject the new medication without any problems.
As of now, I am to be switched again to another biologic due to insurance dictating that there are newer cheaper generic versions of medication on the market used to treat Crohn’s disease. I am currently experiencing stomach cramping, more restroom visits, and returning sore on my legs and arms. I have been without any medication for five months and may have to be placed on Prednisone until I can see my GI specialist in July. My Crohn’s journey is a never-ending story, and it is a never-ending story for most who severe from Crohn’s Disease as well.
