There is a strange ritual that I find with fellow Crohnies, that I have not witnessed in other contexts. This isn't to say that it doesn't happen in other places, but I find it's often the second or third question that we ask each other upon finding that commonality is some variant of "what medications are you taking?"
It is weird. I can't think of many other contexts where a disease or condition is revealed and that is part of the conversation almost immediately, outside of a medical environment, of course. But we do that. Even with other folks with ostomies, what system/brand/products do you use tends to be a fair bit lower down the list of priority in the conversation. There's a curiosity quotient out there for others suffering silently with the same disease. Everyone's Crohn's or ulcerative colitis is unique to them, with what foods and situations their body is sensitive to, but that is a place where we tend to come together nicely, where it's easy to compare notes and get a few small ideas as to other options that might be out there for ourselves.
Here's a big thing to understand about Crohn's: there is no cure. But there are ways to become asymptomatic. This is something that I have alluded to before, though it is worth stating plainly. Crohn's is a chronic disease. It is never cured. Symptoms are at their worst when we are in flare-up state, where, per the name, inflammation is high, thus driving a lot of symptoms in the body. However, a flare-up can be calmed, putting the body back into remission where there are comparatively few symptoms. How difficult it is to bring a flare-up to heel depends on the flare-up--how deep does it go? How long has it been going? What areas is it affecting? In any case, one does not go from hardcore flare-up to remission in a week. It is possible to curb a flare-up before it gets too terrible. That question of when another flare-up will happen is always over my head. Always.
What causes a flare-up?
Great question. Glad you asked. In order to find treatment, it's good to have an idea of what can cause the problem in trying to better it. There are a number of different things that can contribute, but no magic switch that I can strategically avoid. Too much stress could do it. Alcohol could do it. Certain foods could trigger it. NSAIDs (non-steroidal anti-inflammatory drugs) can cause a number of issues--ibuprofen is anti-inflammatory everywhere EXCEPT your gut, where it can cause a significant range of digestive issues. Smoking can definitely cause it (lots of documentation on that one). But what foods and how much alcohol and how much stress? It is different by person, but there are some common threads that are bordering on consensus territory.
That stress point. It's a terrible cycle to have your inner critic demanding that you stop stressing because it might make everything else worse by having your body collapse in the middle of whatever the original stressor was. Initially, I totally went the bottling, denial route, putting aside a great number of things that need processing. I remember very clearly my father telling me one night in the bathroom to get angry, that he didn't want me to be happy if I wasn't, but to then channel that anger into getting better or, in other words, packaging it so I could let it go. That's been a process, to have enough self-compassion to allow myself to feel what I need to feel in the moment, rather than insist that I shouldn't feel something in the misguided idea of preventing my body from disease. It's a protective impulse; it is also fully counterproductive. I'm not great at asking for external compassion, but at least I have better tools to give some of it to myself.
So what are some different treatments for Crohn's?
There's a great deal that are about managing symptoms. For example, if you've had diarrhea, some Imodium and possibly some wet bathroom wipes, Epsom salt baths, or Desitin/Calmoseptine on that raw anus can help quite a bit. Whatever helps you when you feel nauseous, when you have a stomachache, if you have sores in your mouth, etc. falls into this camp. Getting more rest and reigning in your stress are only going to help. But that is symptom management.
There are a few major classes of treatment, including steroids, biologics, immunosuppressants, and surgery.
We tend to think of steroids colloquially in terms of building muscle. The idea is similar, that the steroids are giving your body some extra ammunition in rebuilding areas that are under attack from your immune system, giving you more pieces to wait out the barrage long enough. The big dog in this camp tends to be Prednisone. It's used in other contexts, maybe alongside your antibiotic if your bronchitis isn't responding enough to just the antibiotic alone. There are a TON of different side effects to Prednisone, including but not limited to the following: voracious appetite, heat flashes, night sweats, puffy "moon face" with other body swelling, brittle veins/bruising, and irritability. When I'm on a large dose for any duration of time, I find myself agitated and ready to lash out at anyone, where in addition to feeling out of control of my body I now also feel out of control of my mind. Long term doses can make your bones more brittle, too, which is why after being on a dose (primarily a rather low one) for about two and a half years, I asked for a bone density scan just to be cautious. Coming off of them can be interesting to, since going cold turkey from a high dose can literally kill you. More than once I have struggled through weaning off of the medication after being on an extended dose with a flavor of withdrawal that was, while not life threatening, a frustrating experience to say the least. The flip side is that steroids work almost immediately and they work well. By the next day, I tend to feel a difference. They work, but I know I'm sick if I'm asking to be put back on it.
Immunosuppressants probably make the most obvious sense out of the medicinal side of things. If your immune system is overzealous, take away some of its firepower. However, finding the right balance is imperative. Too far, and a cold is never just a cold. Too little and you're in the same place you started. At Mayos once, I recall asking what all of my options were in reining in a rather persistent flare-up, and the final option, when all else had failed, was a series of medications for those who have received organ transplants, to keep the body from rejecting the "not-me" tissue. When on any kind of balance of immunosuppressants, there are a few other rules and conditions, such as not taking any live variants of vaccinations (e.g. the nasal swab version of the flu shot is usually a weakened live strain vs the actual shot which is suggested for me). For any vaccination that does not have a non-live variant, we depend on the people that can take it to protect us with herd immunity. Get your damn flu shots, folks, if not for yourself but for people that cannot.
Biologics are a class of medications that have some kind of organic origin. A common example of this is insulin. We used to take it from pigs or cows, until we engineered bacteria to produce it and thereby harvest it for persons that need it. For other products in this category, the proteins, sugars, whathaveyou were derived from somewhere, then often reconstituted into a serum. I have had a slew of these for Crohn's, since I was eighteen, to be precise. These have included Remicade (infliximab), Cimzia (centrolizumab), Humira (adalimumab), and my current friend, Entyvio (vedolizumab). Both Remicade and Entyvio are IV infusions, performed either at the hospital or at my doctor's office. Cimzia comes in autoinjector pens (think Epi-Pen) and shots--I gave myself shots for the duration of my usage of this one. Humira I had the autoinjector pens once a week, and it stung every time. I'm not sad to get an IV for my Entyvio now, since I find it easier to let someone else do the sticking and I don't have to keep a supply in a drawer of my refrigerator, figuring out how to take it on family trips and such.
And then there's surgery. This may never be necessary for some folks with Crohn's. I had mine for ten years before surgery was ever floated, actually. It depends on where your disease rests, which areas become too scarred or angry to function any longer, or if it ever gets quite to that point. I happened to be in some severe, long-term flare-ups; there were parts of my colon that were not absorbing water or nutrients to the capacity that they should be, also painfully restricting the movement of fecal matter through the track. To put it bluntly, I was not passing anything wider than a dime, because of how narrowed these areas were. from layers of scar tissue It looked like goose poop. And it hurt like hell. Scarred colon simply doesn't stretch like healthy colon does. And with surgery, of course there are other complications and side effects that come with the territory.
And remember, there is no cure at this time (though I know bone marrow transplants are being tested) for Crohn's--the goal is to get the body out of a flare-up and otherwise keep up with maintenance to ensure it doesn't veer into one. I refer to my infusions sometimes as going in for maintenance and confess I do enjoy the occasional look of confusion.
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