I sat down to write this yesterday, but I realized that I needed to consult some journals and my other blog to get a good idea as to when it started. Because you see, there were a lot of things that lead up to my diagnosis that all seemed unrelated to it. Looking back I can see the signs were there, but I didn't realize it.
So hang in there because this might be a long one.
I was 13 years old and spending the night at a friend's house. It was around two in the morning when I started to not feel well. I figured it had something to do with the copious amounts of Pizza Hut and Pepsi that we had consumed that night. Being nauseated at a slumber party wasn't necessarily unusual for me because I'd always had a touchy stomach, but tonight was different. My stomach actually hurt. Physical pain in my right side, not just nausea. So I turned in, thinking that maybe going to sleep would help.
Spoiler alert: It didn't.
The next day when I went home I told my mother about how badly my stomach had hurt the night before and that I had a lingering sharp pain in my side. Thinking it was my gall bladder or my appendix, my mother took me to the doctor. I had an X-ray and CT scan sometime later in that week. During the follow up appointment, the doctor laughed and said, "You see all that?" She pointed to these weird bubble looking things all throughout my intestines and said, "That's poop. You're really backed up." Then she prescribed me mineral oil and sent me home.
It was embarrassing but I was happy to have what I thought was the answer.
My side pain never went away. I was an efficient pooper, though! Thanks for that one, Doc!
I didn't go to the doctor for the sharp pain in my side for a while after that. I basically suffered in silence. When I started high school, the pain was still there but now any time I got that twinge of pain, my stomach would make these terrible noises. The kind of noises that even when the class wasn't quiet, everyone could hear. And everyone knew it was me. Even my teachers commented on the noise. So I would always lie and say I'd skipped breakfast and they'd heard my stomach growling. My teachers weren't fooled but I think the students were.
Fast forward to college (ages 17-19). I've only just started to go to the doctor again for my side pain as it had become unbearable sometimes. X-rays and CT scans. Nothing new diagnosed. My doctor thought I was full of it and was looking for pain medication. Which to me makes no sense as I had never asked for any such thing. I kept going around and around with my doctor, him thinking maybe it was gas, constipation (again), or that it was in my head. He literally told me that the pain I'd been dealing with for years was in my head.
So I stopped going to the doctor altogether because I knew he didn't believe me and he was the only doctor in my insurance network (thanks, Tricare!).
Fast forward again to when my husband joined the army and we'd moved from Florida to California (ages 23-27)
I had just had a baby six months prior to deciding to go to the doctor again. It seemed that my pain in my side was a little less than it had been, but was still there. It was tolerable at this point, but it might just be that I was used to it. My doctor sent me again for X-rays and CT scans. She tried me on several different medications for gas and acid reflux. Things that you would do when you're doing a process of elimination. She'd have me come in for follow ups and ask questions about whether the medications were working or not. She would feel and listen to my stomach. I kept worrying that things would end up like my first doctor and she would start thinking it was all in my head.
Then one day she was feeling my stomach and I winced. She noticed. She said, "That's not where your gall bladder or appendix is." So she sent me for an ultrasound of my pelvis thinking maybe it wasn't stomach related at all, but related to my ovaries. One very invasive ultrasound later and my doctor told me that I needed to go see the general surgery department of the hospital. She said, "I think we need to send you for a colonoscopy" (age 25).
So I had a colonoscopy when I was half the age that people normally get them. After my colonoscopy the doctor handed me several physical images as well as a disc with the same images and gave me discharge paperwork telling me to sleep off the sedative they'd given me and that they'd asked Tricare for a referral to a gastroenterology specialist.
As soon as my insurance approved my referral, I went to the specialist. The outside of the building was nice with well manicured grass and a pretty little tree in the center of their "court yard." The inside looked like someone wiped their feet on every inch of the walls and there were huge water spots on the ceiling. On that note, let me say that looks can be deceiving. While the waiting room looked disgusting and didn't have any pictures or anything on the walls, the actual examination rooms were beautiful and sparkling clean. So I'm not sure why it was so gross in the waiting room.
Anyway, I saw my specialist and she was wonderful. She was kind, answered all my questions, and was very thorough. When she looked at the many images, X-rays, and CT scans on the disc that my primary doctor provided, she said, "You have Crohn's Disease." She then went on to explain what it was and that she was putting me on Mesalamine to manage symptoms.
This seemed to help. I hadn't had any side pain for a long while. That is until August of 2016 (age 28).
I had moved to Texas by this point and was enjoying my life. My dog and I were walking 5 miles every day, I was finally able to lose some weight and started really feeling good about myself. Then it all went to crap--literally.
It seemed to happen all of a sudden. It started with me feeling like I had to run to the bathroom immediately after walking my dog. I chalked it up to the fact that exercising can just make things move easier and so I ignored it. That feeling of urgency immediately after walking my dog lasted about a week before it became urgency all the time. I was having bowel movements 6-10 times a day and 3-4 times a night. So all the time. I couldn't walk my dog anymore as I was terrified that I'd need to use the bathroom and wouldn't be able to find one.
Soon after I stopped being able to walk my dog, the bleeding started. Every time I went to the bathroom there was so much blood that it looked like a heavy period. I finally decided I couldn't wait anymore and went to the doctor. My doctor put in a referral with Tricare and it took two MONTHS to finally get an answer from them. I called them repeatedly asking about my referral, all the while still bleeding.
Finally they approved it and I went to another gastroenterology specialist. The first words out of my new gastro's mouth were, "You're going to need a colonoscopy and an endoscopy." I expected that, but it's still unpleasant to hear. Colonoscopy went easier than the first one I'd had and upon discharge they prescribed me a heavier dose of Mesalamine along with iron supplements because I was deficient. You know, because of all that bleeding I'd been doing for months.
After the endoscopy portion of my very thorough exam, I had a follow up appointment with the doctor. At the follow up she tells me that my original diagnosis of Crohn's was wrong and that I actually had what's called Ulcerative Colitis as well as Gastroesophogeal Reflux Disease (GERD), She prescribed me Prilosec along with my Mesalamine to try and control symptoms.
I changed my diet and eliminated all foods that would make my flare more active. I had hoped that would help, but it never really seemed to. I was still bleeding a lot. January of 2017 I ended up having a Sigmoidoscopy which is like a mini version of a colonoscopy. The doctor basically told me that the medicine wasn't working as well as it should. So now I'm on double the highest dose of Mesalamine that you can be on. As well as 1000mg Mesalamine suppositories twice a day. So instead of 1000mg once a day and an oral Mesalamine of 800 three times a day, I'm double all that.
I have to give stool samples roughly every month which is kind of embarrassing because the lab tech is the same woman every time I go. I mean, I know that's her job, but I don't like having such an intimate relationship with someone I don't really know.
I have an appointment with my doctor coming up soon and I will most likely update when I get to that, but I get to tell her something I'd hoped I wouldn't: I'm still bleeding.
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