The short version of explaining these diseases is that the digestive system doesn't work properly.
What does this mean?
Here are the basics:
It can mean diarrhea, constipation, intestinal pain after eating, intestinal bleeding, feeling like you have to poo but nothing coming out, incontinence, intestinal cramping, excessive bloating, foul-smelling diarrhea or gas, nausea, ulcerations, and just a general feeling of discomfort. Bigger complications can include fissures, fistulas, prolapses, and blockages. All of this often leads to severe generalized fatigue, low iron, dehydration, which then can lead to more... and more...
When the intestines don't work properly, other systems can be affected. Pelvic pain, liver, pancreas, eyes, skin, etc...
After 3 years of severe Ulcerative Colitis, my large intestine was removed in an emergency surgery. I had a temporary ileostomy for 7 months before the reconnection and internal J-Pouch was created in a second surgery.
Life with a J-Pouch can be complicated. The first couple of months after surgery (before I was diagnosed with Crohn's Disease), was quite difficult. Essentially, this J-Pouch needed to 'learn' how to behave like a large intestine & rectum. I needed to use rectal catheters at night, sometimes with Depends, and had different things I had to do to help the J-Pouch build up muscle strength and capacity. I, unfortunately, suffered from Pouchitis, so the inflammation persisted after surgery... so I didn't feel all that different. Over time though, the incontinence improved, the urgency improved, and my J-Pouch started behaving like a real large intestine. I have to be more careful with certain foods, I have had to be cautious about foods that may cause blockages (and have had a few partial blockages), but overall, the internal J-Pouch essentially behaves the same as any other person... with IBD.
So what kind if behaviours are common for someone with IBD? What is it like day-to-day?
1. Any place we go to, we will know where the washrooms are within the first few minutes. We need to have a game plan and a route to get there.
2. If the bathrooms in a public space have no actual main bathroom door at the entrance, we'll often choose the last stall - as far away from the entrance as possible.
3. If a public washroom has a door to the entrance, if it is propped open, we may close it before going in.
4. We will often take aisle seats at movies, or performances, or flights, or on a bus - again, preparing for a sudden washroom break.
5. We may be hunched over - this is what is known as the protective stance. Our 'stomach' (really, it's the intestines) are always in pain. Sometimes being scrunched up a bit helps us with that cramping pain - we can't always help it.
4. All of our plans are tentative. Every single day, I wait for my intestines to 'wake up' before I know what kind of digestive day it's going to be and what activities I may or may not be able to physically handle.
5. We will always have food restrictions of some kind - and they might be different from every single other person with IBD. Every person has a different experience.
6. Most fad health diets are not only unhelpful to someone with malfunctioning digestive systems, but they can actually be quite harmful.
7. Some of us might exhibit some adrenaline-junkie behaviour - this is because adrenaline temporarily slows or halts digestion - and this may be the only time of the day when we feel very little pain.
8. We have a very complicated relationship with food - and our weight will often fluctuate severely depending on how we are doing and what medications we might be taking.
9. We often need full crash days.
10. Sometimes we need to go on an all-fluid diet for a few days to help the intestines rest. Sometimes it is just to painful to eat.
11. Nausea is common and often constant.
The best way to manage your own IBD is to really listen to your body. Keep a pain diary & food diary to figure out your worst food triggers. If certain foods seem problematic, try removing them from your diet for a few weeks, then try re-adding them in.
Use this same process for activities and stressors that might be catalysts for flare-ups. Try to understand when your body is telling you that it's going to crash - pay attention to all of those signals our bodies tell us when we are pushing too hard or when we need a bit of a break. I'm not suggesting not to do those things, but understanding why you flare-up or why your body crashes can help manage the disease. It gives you the information and opportunity to prioritize your life and what makes you happy - and to find ways to manage your stress in better ways.
It means learning about your body in new ways, and understanding your physiological processes on a much deeper level. Soon, you'll be able to recognize the differences between types of pains before they become out of control.
Once you understand your own body, it gets easier to manage the fatigue, the full-body inflammatory processes, the crashes, the nausea, the eating habits, the medications, and everything else.
It takes time, patience, and the knowledge that your experience will be unique, even though thousands of people have the same diagnosis. Tips and tricks from others can be incredibly helpful, but there are many parts of this disease that no one can anticipate. 6
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