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I was diagnosed with ulcerative colitis 20 years ago, and as life would have it, my diagnosis changed eleven years ago to Crohn’s disease. As Abraham Lincoln said, “my feet are planted firmly in midair” with a foot straddling two worlds. Oh, but what a wonderful life it has been. I am sure you know digestive disorders are a topic not easily spoken about. Honestly, who talks over the dinner table, sitting at the bar, or at a gathering about bowel habits, cramps, and the consistency of inconvenient bathroom runs? I might be the only one, but that remains to be seen, for the stigma in discussing such things has far surpassed my social boundaries. So, let’s get to it, shall we?
According to the Centers for Disease Control and Prevention (CDC), Crohn’s and ulcerative colitis belong to a category known as IBD, Inflammatory Bowel Disease. IBD conditions are characterized by chronic inflammation of the gastrointestinal tract. Sounds simple and straight-forward, but what does it mean? Have you ever grabbed or been given an unexpected hot pepper, or a dash of ghost pepper, that has left your mouth, eyes, and anywhere you’ve touched in pain? The inflammation and fiery burning sensation are unbearable for some time. This inflammation, with proper attention, will go away after a few days, yet we are always on guard against the next time it may happen. This is a typical example of what happens when one has either Crohn’s disease or UC. However, unlike the hot pepper, it’s not our fault this occurs. It's not known whether our immune systems are over-reactive in our digestive tracts or if it's solely genetics. It wasn’t something specific we ate, nor was it any alcoholic beverages we consumed. I’m saying this because sometimes those with UC or Crohn’s may feel guilty as though they have done something wrong or did not take care of themselves. It is simply not true and the guilt is unjustified. I can still recall believing it was something I created in myself, and others deem it as such because they do not understand what is truly happening. Many years later, I still get apologies from friends and family alike as we laugh at our attempts to figure out a “logical” reason. Remember, my friends, nothing of what happens in IBD, is our fault!
Let us talk about ulcerative colitis: UC occurs when the immune system reacts to food entering the large intestine or colon by mistaking it for a foreign object. As the immune system goes into hyperdrive, it repeatedly attacks the food, causing lesions in the colon's first layer called the mucosal lining. Just like the pepper burning and inflaming the throat or anything in its path, the same happens with UC. The major exception is that the irritation is found inside the colon. This irritation in the colon rears its ugly head in such fashion as lots of diarrhea, cramping, bloating, and a sensation of pain below the stomach and often in the lower back. The diarrhea produces blood and water in the feces. It sounds fun, doesn’t it?
The first time I experienced this, I was scared out of my mind. So scared and embarrassed, that I didn’t tell a soul. I thought I hid it well even though my bowel control seemed to vanish. I started carrying extra clothing and toilet paper with me everywhere. As the weeks went on, however, I couldn’t hide the fact that I was unable to eat, I was exhausted, and that the color of my face turned pale white as if the flu or the zombie apocalypse had gotten me. The resulting dehydration can become extreme. These signs and the noticeable missing toilet paper around the house gave my family a clue that something was not quite right. I had become the world’s greatest actor playing a role that everything was fine. By the time my folks started asking questions, I was dying a slow death. Even looking up information online at the time freaked me out. Never having a symptom before, the suddenness of the onset convinced me that I really was dying a slow death. It is bizarre to think, but this is normal and happens more than people acknowledge. When I brought my symptoms to my doctors’ attention, they were more than informative and willing to help. Oh, the sweet relief of entering treatment and the comfort in listening to such stories like my own. The feeling of that weight lifts when you realize you’re not alone. Never think you are on this journey solo!
So how about Crohn’s disease? Crohn’s disease is slightly different from UC. While UC stays primarily in the colon with a straight-line pattern of inflammation, Crohn’s can appear anywhere in a blotchy pattern throughout the entire digestive tract. That's right my friends, anywhere from your rectum to your mouth, our buddy Crohn’s can inflame any part of the system. This difference is how our doctors can identify UC versus Crohn’s. The diagnosis will help determine your personal treatment regimen. Furthermore, Crohn’s will keep attacking the first layer of the digestive system like UC, and it will go deeper to the transmural lining or the third layer of the intestinal walls. That means increased diarrhea with blood and fluid, further pain, bloating in various areas, fatigue, dehydration, nausea, vomiting, and a general sick feeling from head to toe.
Eleven years ago, I had a flare-up that changed my diagnosis from UC to Crohn's. I was shocked! I questioned my specialist as to what had happened to change things? He explained how these two diseases are so closely related that it is tough to be sure of what we have. During that flare-up, the tests showed inflammations in not only my colon but in my small intestine and a spot in my stomach as well. The symptoms I had were no different than before. To me, all that had changed was the name we were calling it. I had great trust in my doctor, and he had faith in me to continue being positive, adjusting to each day. These little victories transform us into warriors.
Believe me, I know that reading this can be quite triggering. If you have been diagnosed with one of these two diseases, or feel you may have one of them, the stress factor can be overwhelming. So let us discuss what you can do. Like any health issue, being open and honest when talking to your primary care doctor is where to start. Hell, just talking to anyone honestly felt so freeing. My awkwardness in approaching the subject slipped away. What an empowering feeling! The more precise and in-depth you explain the symptoms and feelings, the easier it is to get yourself to better health. More than likely, you will be referred to a digestive specialist who is going to want to perform one of several procedures: a sigmoidoscopy, endoscopy, or a colonoscopy. These days, the way these procedures are done, you will laugh afterward at how simple they truly are. In these tests, doctors take a small camera, insert it up the rectum in the sigmoidoscopy and colonoscopy, or down the throat in an endoscopy. Very quick, simple procedures which 99% of the time you are under some type of anesthesia. Always enjoy that ride as you go goodnight, for it is relaxing. Once, while in that twilight state, I recall hysterical laughter from the doctor and assisting nurses as I questioned my doc, “How did you know you wanted to do this specific job for a living?” My guidance counselors in school never mentioned such a profession!
As the years go by, exciting medical advances in this area continue to spring up. Many different medicinal therapeutics such as Remicade, Humira, prednisone, Asacol, 5ASA, etc; the list is nearly endless! Whether you are having a minor flare-up of either UC or Crohn’s or a major issue, there is a treatment that can help you, and fast. Remission of either disease is not only possible but expected by most doctors. I thought I’d never see the day when I didn’t have to carry extra clothes or toilet paper with me while out to dinner, at work, going to the store, walking in the park, or even on a date, but it does arrive. It was AWESOME to be normal!
A good doctor will always listen thoroughly and make sure you feel like a partner in your treatments. While they do their part, there are things you can do to help your situation. Some items that you can personally work on include stress reduction, diet, exercise, vitamin supplements, rest, and self-care.
I have found that liquid B-12 will help when your energy feels low. I know when my stomach starts to feel off, there are many probiotics for gut health on the market. Just like any good consumer, I started buying the cheapest product on the market thinking all probiotics are created the same. Not true! You do get what you pay for. A specific brand I always look for is Natures Bounty Critical Care for the GI. Your gastrointestinal tract will thank you.
There’s no way to eliminate the stress of everyday life. However, you can find ways to manage it. Take your minutes even if they turn into days, and be selfish with self-care. Not everything works for everyone. Your style is what matters. For me, seeing a therapist and practicing meditation has helped me keep things in control. Others tell me they use yoga, writing, painting, reading, sports, and many other "vices" in bringing down their stress levels. It is YOUR life, so it’s your choice.
Remember, what you put in your body will produce a reaction throughout your entire digestive system. We all know that greasy foods are not too healthy for us to begin with, yet if you have one of these conditions, the aggravation will only be exacerbated. This is not to say you can never have a beloved Mcdonald’s meal ever again; it only means to watch what affects you personally. Finding a good dietician is always worthwhile. They can fill you in on so many delicious things! Remember, there is a lot of trial and error, so keep a daily log of your eating habits. Certain things work for some and not for others. It’s okay. These diseases are not a one size fits all. It would be comforting if they were, yet the freedoms you may have may differ from someone else's with the same condition. We are all unique, and, as in life, our uniqueness follows through to what works in our bodies.
Exercising is a wonderful way to keep your system flowing properly. Simple exercise such as walking to the store or taking the stairs helps produce healing agents in your body naturally. I enjoy walking a local trail around a man-made lake. Beautiful birds, tall trees, and cool breezes never hurt. I try to walk 2 miles each day depending on the weather yet some days it’s just not doable. Those rest periods may last just a day or several in a row. I typically do not like missing days because I feel like I’m starting over on my routine, however, adding to daily aches and pains associated with these illnesses are certainly not worth it. Do what you can and what is comfortable. Your expectations and limits are up to how you feel.
While I was never one for taking supplements, during the last 20 years, I’ve found remarkable improvements in all areas of vitamins, probiotics, collagen peptides, Boswellia, etc. These items are available at most grocery stores, as well as online, and their effectiveness is well worth the money. They are easy to take and can be absorbed into our systems with great success. Again, it’s your body, so give things a try as you see fit. Trial and error my friends!
Good sleep is a must. Sometimes we do not know our limitations as we force ourselves to stay up. We know that fatigue is a major issue with any digestive issue, so we need to understand that getting good rest is essential. You may notice you cannot pull all-nighters as you once did before or bounce from one thing to another with ease, yet it’s okay. Even if we do not have health issues, we all slow down at some point. Make sure you take care of yourself. Your body will tell you when it’s time for a break, so trust it. My bed is a personal sanctuary. Make your sleep area a zone of Zen where dreams are limitless. I look to try and get a solid 8 hours of sleep per night/day. Because of our unique systems, it is not unusual to sleep for more than 8 hours. Remember, it is the quality of sleep that matters the most.
Finally, be good to yourself. It is exceedingly difficult to be positive when you feel like your body is failing you. It is one hell of a lifestyle adjustment. Yet, it’s not as big of a mountain as you may think it is. When I was forced to face my health issues at 21 years old, my biggest fear was who is going to love me with a disease like this? What a nonsense fear that was! I have found such wonderful people that I would never have met if not for my condition. I have been to amazing places and lived life’s changing experiences since being diagnosed. As time passed with these diseases, UC and Crohn’s, I began to see both sides. They were actually both a blessing and a curse in my life. A blessing in the fact of the wonderful support from great people and a curse... well, you all can pretty much guess why. I have found there are great groups online and local Crohn’s and Colitis Federation of America (CCFA) branches. In your area I guarantee you are not alone. If you are so inclined, you can start your own group on platforms such as Facebook or Twitter. On Facebook, there is even a free dating site for those strictly with Inflammatory Bowel Diseases.
If you have a digestive issue, be proud of yourself. I'm serious; you are among a group of the greatest people in the world. You will share a strong bond with others who have similar issues or know of someone with similar diseases. Be good to yourself. You did not cause the situation, but there are many things you can do to deal with it. You are part of a special group and you are not alone! We do not have an official handshake yet, but maybe for the next blog, I’ll come up with one. What do you think?
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