I was diagnosed with Crohn's when I was twelve. I remember having to drink a lot of barium for a couple of different x-rays that they wanted to do, which was absolutely miserable when I didn't want to eat or drink anything, let alone a liter of chalky sludge. There was a fair bit of bloodwork thrown in there, a colonoscopy, biopsies from the colonoscopy, and, to eliminate the possibility, my appendix was removed (on my twelfth birthday no less, true story).
This stage, the place of not-knowing, it freakin' sucks. When you're running tests and tests and meeting with several different doctors and languishing in the meanwhile, it's a vastly frustrating stretch of limbo that I would not wish on anyone. In the same breath, it's a necessary kind of purgatory--we don't know what to treat until we know what it is, steadily eliminating possibilities until we're left with a reasonable answer to start testing treatments. Sometimes this is stretched over months and years. It may not sound like it, but sometimes that stretching is a good thing--you're not immediately dying if there is time for a casual stroll through tests and appointments, as compared to the pace of discovery for someone brought into the hospital unresponsive and steadily declining. All states of this limbo--immediate danger and when it feels like you're the only one urgent to find answers--are emotionally taxing in a very specific and devastating manner. Not-knowing is waiting. Not-knowing feels stagnant. Not-knowing is fear. Once you have some kind of answer, there is a path, some kind of outline as to what might come next. In other words, in some ways I would rather have cancer than be in the process of running tests to find out if what I'm experiencing is cancer. I can work with a disease or condition; I cannot work with or emotionally process a shapeless, nameless problem.
What are some of the tests and procedures one might expect in diagnosing the disease?
Colonoscopy immediately comes to mind. They're not just for people over fifty. I'm pretty sure that I have had more myself than the rest of my work office combined--I'm definitely in the double-digits, getting closer to twenty than I would like. More about the specifics of that through this link. Inflammation tends to make normally happy, pink tissue look red/yellow/black and a flavor of ANGRY. A colonoscopy, then, uses a flexible camera up your bum to take a look at your colon and see if there are any areas that are obviously irritated. Biopsies are often taken at this time to run for cancer screenings and other abnormalities.
An endoscopy goes through the other end, looking down ones throat/esophagus to ensure that those paths are clear and healthy.
There is also a swallowable camera that can take pictures as it makes its way through your entire digestive tract. I've not experienced this, but I cannot imagine that retrieving the camera is any kind of fun.
Other procedures can be various x-ray procedures, such as CT scans. Here the radiologist would be checking to see how a radiopaque substance (something that the x-rays do not go through as well) looks as it goes through various systems. In my case, I had to drink a lot of barium and they were able to track it through my small intestine and the like to make sure that areas seemed to be functioning correctly, where areas might be narrow, if there were any leaks, etc.
With many tests, the prep tends to be worse than the procedure itself--either something needs to be swallowed, you cannot eat for a certain period of time, or you have to clear out your digestive tract with a series of laxatives starting the day before. It's pretty miserable. The procedures are pretty simple--I will sometimes look forward to a colonoscopy first off because I like to see the resulting pictures to track the progress for myself and also because I'll get a nice nap in that day--for themselves, but everything is at least a little extra frustrating when you haven't eaten for fifteen hours. Navigating the insurance components, too, is interesting on occasion; for example, my insurance has my doctor in network but my doctor's outpatient endoscopy center that they prefer to use is out of network, meaning that my insurance would prefer I go through the hospital instead, for whatever reason.
What does the bloodwork look for?
Bloodwork are looking for a few different things: if your red blood cell count is low, you might need a transfusion to replace some of what was lost. If hemocrit is low and you're edging toward anemic, trying to get some iron back in there to perk you up that way can help. The presences of certain white blood cells over others can indicate what kind of infection the body might be fighting--a parasite infection is different from an allergic reaction or a bacterial infection in terms of what kinds of white blood cells are elevated. For Crohn's, we're looking for additional inflammation markers like C Reactive Protein (SED rate used to be a big one, too, but has had some new research to indicate it is not as helpful as previously thought, as I understand it) and vitamin D. vitamin D is kind of an interesting one, in that it is not currently clear whether a lack of vitamin D causes a flare-up (meaning a significant increase of symptoms) or whether a flare-up causes a lack of vitamin D. The consensus at this time, then, seems to lean toward supplementing vitamin D.
What's the difference in a diagnosis of Crohn's and ulcerative colitis?
The word "histology" will be tossed around in this discussion, which basically means that some deeper study into the tissues is needed to make the final distinction.
Ulcerative colitis tends to hang out almost entirely in the large intestine, the "col" of "colitis" meaning colon, literally "inflammation of the colon." Colon and large intestine are interchangeable terms. There are a couple of facets where the liver are affected, but essentially if the colon is removed, there is no more colitis, just adjusting to living without a large intestine. Ulcerative colitis, too, tends to be closer to the surface, that the disease doesn't penetrate into the tissue too deeply, compared to Crohn's. There are a lot of facets that Crohn's and UC will share, including tests and treatments, but there will be some paths and ideas that are specific to their own disease.
Crohn's can cover the entire digestive tract. In my case, mine likes to hang out primarily in my colon, hence Crohn's colitis. But I've also had severe mouth sores and a few other symptoms that have not strictly stayed in place. Why I am diagnosed with Crohn's instead of UC, though, is how deep the disease goes in the tissue--it goes Crohn's kind of deep. This is not to say that Crohn's is inherently more severe than UC, understanding that there is a lot of personal chemistry and situation floating in there and that it's not a contest to see who is suffering worse than the other, but Crohn's can be interestingly insidious when it goes deep enough.
They are separate conditions. Someone's UC does not develop into Crohn's if left untreated or anything of that ilk--they will simply have severe UC symptoms, which again will closely overlap with Crohn's symptoms but it does not become Crohn's or spread outside of that area. The approach in how they're treated will be different and their responses to treatment will be different, even if they are sometimes using the same dosage and medication.
But more on treatment in the next of this series.
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