What an awesome page. Adam, you are really providing an awesome service to the “IBD Community”!
I just checked “I might have UC, not sure yet” because my official diagnosis is Crohn’s disease, although my symptoms are that of UC and I’m being treated like I have UC. When I had my colonoscopy, there appeared to be healthy tissue between scars from a previous flare and the current flare which led to the Crohn’s diagnosis.
I can’t really put my finger on when my symptoms started. I was actually hospitalized when I was 10 for severe cramping and diarrhea, and I reported blood in my stool, but all tests came back ok. The thought was that possibly it was a psychosomatic response to having a father who was extremely ill with UC. (He was diagnosed when I was 4 and had a complete colostomy/illiostomy when I was in my early 20s). When I was 18, I had an “irritable bowel” most of the time and lost some weight, which was ok since I was always a big guy. As I got older, I actually gained a *LOT* of weight, and started having more “irritable bowel” symptoms that I just chalked up to me being me. In 2006, I moved over to New Zealand for a job and was there 3 months before the rest of my family arrived. I walked everywhere for over a month before I purchased a car, and had a LOT of close bathroom calls. I started having horrible cramps that felt like I was squeezing a cheese grater through my intestines, and figured I was eating too much strange food, drinking too much wine, and just stressed out because I missed my family. I was extremely fatigued and wanted to sleep all of the time, but again chalked it up to stress of adjustment. Fortunately, soon after they arrived, the symptoms went away. We moved back to the US in July of 2007.
In spring of 2009, before turning 38, I experienced some traumatic stress in my personal life while trying to finish my 2nd year of a PhD. Layered upon existing drama, I started getting very sick when I drank beer and was pretty sure I was passing blood. When I saw my physician, he did a small scope in-office and said my rectum seemed a little inflamed, but nothing major. He told me that he could set me up for a colonoscopy if I wanted, and as sick as I was getting, I decided to go for it.
As everyone says, the prep for the colonoscopy sucks, but I don’t remember anything about the actual procedure. I vaguely remember the gastroenterologist standing by my bed smiling at me, and my wife said that when I asked him what was going on, he just smiled brightly and told me I have Crohn’s disease. He wrote me a prescription for Asacol suppositories and set a follow up appointment 3 months later(!). I was furious when I was coherent enough to piece everything together, and called for a sooner appointment. After badgering the office (I mean, who gives out a diagnosis like that without any information?!) they told me he could see me in three weeks. When I didn’t give, they got me in to see him that week. In the meantime, the colonoscopy really set off the bleeding and cramps like never before, so I was glad to be able to talk to the doctor. That changed when I actually saw him.
The doctor was angry that I demanded a visit, but I explained that he might want to consider that there is a lot of scary information on the internet, and none of it seemed to fit me for “Crohn’s Disease”. He told me that right now my disease is much more like UC, but I could plan on it spreading, becoming very serious, being on pills for the rest of my life, and expect several surgeries along the way. Honestly, he was being a little passive-aggressive, and didn’t give me any hope to cling onto. After my meeting, I went to my car, and sat there bawling my eyes out for about half an hour. All I could think of was how sick my father had been, and how I had always been told that I didn’t have to worry about inheriting this disease because it wasn’t genetic…
I have to confess that I didn’t switch doctors, even though that should have been automatic. I was determined that I would not be sick, and therefore would not need to see him again. I did in fact pull out of that flare, and with a few minor bumps along the way was doing pretty well until May. We were on a road-trip, and I caught a nasty cold and had a nasty flare at the same time. I went to a walk-in clinic and went back on the Canasa suppositories twice a day. To my surprise, this cleared things up pretty well. However, just a month later, while traveling again, I came into another flare that really knocked the wind out of me. I tried like hell not to go back to the doctor, but after two months, cried uncle and went in and got my first scrip for Prednisone after no joy from Lialda for a week.
Now, I’m lucky in that I felt GREAT when I started taking a relatively low dose (20mg the 1st week, 10mg the 2nd week and 5 the 3rd). I had some side-effects, but all were really minor. However, by the time I got down to 5mg, the blood and nighttime cramping/upset stomach came back. Just today, I called the doctor after struggling with the decision and asked if I could go back on the Pred short-term. I’m in the process of moving to another state to start a new job, and don’t want to be symptomatic during the transition. I’m still taking Lialda, but have questioned it’s utility and hope to be off of it soon. I’m no longer taking Canasa, because it seemed to irritate my colon more than it helped.
As I started feeling better from the Prednisone, I decided to pull my head out of the sand and face this thing full-on. I am tired of lying, hiding, avoiding because of a disease that I am not responsible for having. I started reading again and decided to start blogging and vlogging. I came across some of Adam’s posts which led me here. I really hope to get in communication with others who are going through similar things. I just started the SCD, and am trying to be hard-core about it. It was easier since for the past half of a year I adjusted to going gluten-free after realizing how much that affected my gut in a nasty way.
I know this is getting long, so I’ll leave it at that. I only have one video up right now that says pretty much the same as this, and am journaling about random things including food on blogger. If you want to visit, I’m IBDvlogger on Youtube and my blog is at www.ibdblogger.blogspot.com.