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WHAT THE BALLS IS CROHN’S DISEASE
Well, that is at least what I imagine goes through most people’s brains. Or would go through mine.
When I left off telling my side of Living with Crohn’s Disease, I had taken you all up to the point when I started Remicade. But before I proceed any farther into my story, I wanted to take a minute and actually tell you all WHAT THE BALLS Crohn’s Disease is, why it is such a slippery and elusive little bugger, what are some typical treatments, and a few other points of interest. I am going to try to make this as understandable and accessible as possible without dumbing it down—essentially, this is how I explain Crohn’s to just about anyone that I meet. A mixture of technical and what you actually need to know.
WHAT IS CROHN’S DISEASE
Crohn’s Disease (and Ulcerative Colitis, with which it is commonly paired with, as in the Crohn’s and Colitis Foundation of America, or CCFA) is an Inflammatory Bowel Disease. IBD is a completely different and separate entity from IBS, or Irritable Bowel Syndrome, though many with IBD also suffer from IBS. IBS is, at its most basic, essentially a sensitive stomach, but it can range in severity. Amber does a great job as a spokesperson for IBS, and with April as IBS Awareness Month, I urge you to check out her informative posts on IBS and IBS treatments.
IBD, however, is a different animal. This is not to say that one is worse than the other—truly, it every much depends on the person and the individual case. The inflammatory aspect of IBD is what sets it apart—this is an immune system response. In essence: my body’s immune system attacks my digestive system.
The fact that my immune system attacks not only my colon but the entirety of my digestive system (from mouth to mouth, as it were), is important in distinguishing my disease from UC, or Ulcerative Colitis. Colitis denotes inflammation of the COLON with a presentation of ulcers. I have had ulcers in my colon as a symptom of my Crohn’s, but without being diagnosed with UC. Kind of like Square—Rectangle, if you will.
WHAT WERE YOUR PRESENTING SYMPTOMS?
Alright, this is the part that is “gross” and quite personal, but I think is 100% necessary. I’m gonna be pretty cut and dry about it—a lot of this is looking back and perspective—we didn’t necessarily realize it at the time.
- Diarrhea as well as spasmodic colon. What came out wasn’t formed, but often my body was dry heaving, if you understand. And it could come out of nowhere—one minute you are ok, the next you are RUSHING to the restroom. Only to have nothing come out. However, I am not a vomit-er: if I am vomiting, it is likely not a cause of my Crohn’s—that means something else is at work.
- Constipation. Body can’t make up its damn mind. But it thinks it needs to go. Miralax can help, but really, not so much.
- Cramping from spasmodic colon as well as severe gas (and bloating). Think knife in belly that is being twisted. Alternatively feeling like the Michelin Man. Sometimes at the same time. And no, Gas-X doesn’t work (though you take it anyway).
- Anemia and poor blood levels (Malabsorption). Your body isn’t absorbing anything, and if you have ulcers (a standard symptom of inflammation and IBD), you are basically chronically bleeding, leading to low iron levels and vitamin deficiency.
- Ulcers throughout your digestive system (including your mouth).
- Acid Reflux
- Poorly healing skin. My skin doesn’t heal well when I am flaring and is more prone to breaking down.
- Peri-anal abscess. (for Fistulizing Crohn’s Disease, which I have) To make this short and sweat, I had a body cavity of infection the size of a softball that was attached to my anal/rectal wall. (Thus why we thought I had hemorrhoids—the area itched, burned, and hurt terribly) The pressure on the abscess made it hard to stand or sit for long periods of time (squatting was most comfortable). I ended up having a relationship with an incredible Colo-Rectal surgeon for a while. She is the one who did my surgery in December 2001, where they cleaned out the cavity and put in a drain, which drained continuously until my birthday (April 9) in 2002, 4 days after my first Remicade treatment.
Other common symptoms (which I have also had):
- Impactions (this is not constipation. This is cement, and nothing is getting through)
- Strictures (which I have had)—loops of intestine that become pockets of ick.
- Amenorrhea (Loss of menstrual period)
- Night Sweats
- Fatigue (often linked to the anemia)
WHAT CAUSES CROHN’S DISEASE?
Good question. We honestly don’t really know. Research has proven that there is a genetic component—a predisposition to the disease. But just because your mom has Crohn’s does not mean that you will. Colon and digestive illness runs throughout my family, and we pretty much knew that I would be getting something, just like we knew that I would likely have hormone issues and some variety of depression (all of these things all over my family’s medical history). But we didn’t know what or when or how.
Crohn’s Disease, UC, and, in fact, IBS have a favorite victim: adolescent-young adult aged white, type-A female in developed countries. This is not to say that other people don’t have it—I know many men and African Americans who have SEVERE Crohn’s. But I do mention this because it plays a role in my disease. Why is that? Stress + Hormones. I tend to flare during times of acute stress and or hormone imbalance, which then can cause my Crohn’s to get even worse (and also promote stress) and thus the vicious cycle. My clinical depression and anxiety was diagnosed after my Crohn’s was, but looking back—that coming to grips with my mortality watching Armageddon that I mentioned? A panic attack.
When I turned 13, something shifted in me hormonally—I had always been a “hot” kid, wearing shorts in winter and such, and I had a terrible time getting to sleep, and then was impossible to stay asleep, and I was very much a “sprinter” (but then again, still not so fast). Three weeks after I turned 13 (seriously, I remember it because it was the craziest thing), I started getting up with my alarm. Then, I started being a bit “cooler” temp wise than before (helpful during the Atlanta summers, I tell you what). About 2 months after my 13th birthday, I started growing the abscess, and I was diagnosed that fall.
What are the treatments for Crohn’s Disease?
To keep this a bit more manageable with regards to length, I am going to briefly mention the most common approaches.
- Medication Often employed in a Dual Therapy approach (which I follow) more info here
- Biologics can be administered via IV (like Remicade) or subcutaneously (a shot that you give yourself) like Humira. I have been on both. These drugs actively work to help neutralize my system by selectively interfering with my immune system. Check out this page for more information.
- Immunomodulators tell my body to SIMMA DON NAH by suppressing and modulating how my immune system works. This keeps my immune system at bay and also allows my digestive system to heal.
- Corticosteroids nonspecifically suppress the immune system and are used to treat moderate to severely active Crohn’s disease.
- Diet and Nutrition
- Obviously a big part of my life–we all know that eating well promotes greater health. Well, so does eating certain things. That is why I follow the diet that I do, and take the care of myself that I do.
- I have not yet had surgery to treat my Crohn’s Disease. I did have surgery, yes, but it was to treat a symptom (the abscess) and had no bearing on my disease. Because my presentation is literally all the way through, they cannot just remove a piece of my disease where it presents—there would be nothing left for me. This is an option for some—and some even are essentially cured after! But for my disease, there is no cure, surgical or otherwise.
- Cognitive Behavioral Therapy
- I saw a therapist for several months after diagnosis, as noted last week. I also take Effexor for anxiety/Depression. And I shrink my own head.
- This is difficult. I am currently only on birth control, but I have been on a rather intensive protocol before after not having a period for 3 years. To be honest, the lack of period wasn’t so troubling—we were more worried about my bones
How long do flares last?
Erm. Well, that’s like asking how long are you going to like eating oatmeal for breakfast. A flare lasts until you find the right course of treatment, or your body magically decides to cooperate. It also depends on what you consider a “flare.” I consider a flare significant enough to impact my daily life and or cause me to call my doctors and receive medication. But I have symptoms of my disease periodically. Sometimes that just means a week of really bad gas for no reason. A flare, though, is like the difference between allergies and a cold. Or a 24 hr I don’t feel so great and the flu. You KNOW that something is wrong, though it might take you a few days to really realize it. Sometimes, they creep up on you. Sometimes, they slap you across the face.
Crohn’s pain and episodes can literally come out of nowhere. When I am in flares—sometimes every hour of every day SUCKS. But sometimes I’ll have a good day, then I’m basically bed rest the next. Often it is hour to hour: I’ll feel good enough to go somewhere, only to be in a state of near panic once we get there because I feel so terrible. That’s why so many people with IBD’s and such tend to become a bit reclusive—we get scared of it hitting when we are far from home. One moment—we have color in our face and twinkle in our eyes. And the next? I turn ashen gray-green and just drop—go dead quiet, or double over in pain. It is the most frustrating and abusive relationship, because it leads you on and then pulls the floor out from underneath you. But that is also why I feel it is so important to surround yourself with people who support and love you regardless because they will help you get out and enjoy life as much as you can, and carry you home if need be.
Because of the length of this post, I am going to hold off on talking about the long term effects of my disease. But I hope that you all found this helpful!
Do you have any other questions? Do you know anyone with Crohn’s Disease? How do you try to support them?