Autoimmune Disease and Dehydration

| October 21, 2013

by: Rebecca de Jesús

Dehydration Frustration
Chances are, there are many of you who know someone with Crohn’s Disease. Or, you may have Crohn’s or Ulcerative Colitis yourself. There’s even a greater chance that it’s one of very many Autoimmune Diseases. I’ve had Crohn’s for more than half of my life – 21 years. Of the myriad of symptoms with Crohn’s/Colitis (IBD – not IBS), dehydration is probably the most frustrating. Flare-ups appear and disappear with ridiculous uncertainty and without warning. They can last for a day, weeks, months or years. Rarely, some people may never have more than one flare. But for most of us, it’s a lifelong gig, and we forever juggle the changing nature of its course.

Crohn’s makes me very dehydrated on a daily basis. I’ve always had to stay 20oz. – 30oz. ahead of the game, and consume just as many more oz. than those without Crohn’s or Autoimmune. Crohn’s Disease is an illness that literally prompted my husband and I to make one of our top priorities the number of bathrooms when we were house hunting. To go to the bathroom about 20 – 25 times per day during a flare was not uncommon. Furthermore, bleeding along with the diarrhea was another lovely addition to the mix. Yes, at times my life has been like a bad movie when it comes to Crohn’s.

Crohn’s causes inflammation of the digestive tract. When that happens, the diameter of the intestines narrows. Food and liquids are not properly absorbed, if at all. Sometimes that diameter becomes so narrow that solids actually block the passage way and totally block the intestines. Regarding fluids – inflammation also prevents absorption of fluids – specifically electrolytes like sodium and potassium. If anyone remembers their college Anatomy class, sodium and potassium continually work in a delicate interplay to maintain the life of cells. Too much sodium or potassium in or out of the cells can lead to dehydration. Dehydration can be seen when skin is dry or wrinkly. Conversely, too many electrolytes can sometimes lead to swelling (edema). More so, when practically no electrolytes are absorbed into the intestines (where most of the absorption takes place), different organs are affected and body systems start to shut down.

Most everyone has had some type of blood work. Doctors check for electrolyte imbalances for various reasons. When I feel very dehydrated and that I may not be able to manage it on my own, I’ll get an appointment with my doctor. Sometimes I get some IV fluids and I’m good to go. I’ve also been anemic many times and also for long periods of time. Anemia can add to dehydration because it throws the chemistry off and causes imbalances in bodily functions. So off I go to the Infusion Suite to get Iron Infusions – a 4-6 hour process which is usually pretty benign.

Things like dehydration, absorption, etc. have gotten the best of me at times. As much as I know in my heart of hearts that “it is not my fault” or that “I did or didn’t do something to cause it,” I sometimes fall prey to the critical voices in my head. The perfectionist, the people pleaser, my ego, my bank account (health care is freakin’ expensive!) Or, there are the voices of other people: Why don’t you just drink more water? Take an iron supplement – that’s what I do! Get a B12 shot! Are you getting enough sleep? How much coffee do you drink? These questions can still get to me, but I’ve learned that some people just care a lot. And some others have no clue!

These things can get me down. But dehydration itself can also cause depression. Some other symptoms that I get when I’m dehydrated are:
• Dry lips and mouth
• A strange tightness to the skin on my fingers and hands
• Very stiff joints and my bones and muscles ache
• Dry skin on my feet and toes
• I crave salt and eat potato chips, pretzels but I’m also really nauseous all the time
• My eyes and scalp get very dry, itchy and painful and I start to lose my hair

Hands-down the biggest predictor and symptom of dehydration is fatigue. Like I need 12-to-14 hours of sleep every night kind of fatigue. The never-ending personal interrogation: Why am I so tired? Did I sleep too little? Did I sleep too much? Doctor, please do the Mono test AGAIN! Am I dying? Is it my thyroid? Am I doing too much? Am I not doing enough? Too much stress? Not enough stress?

But no matter how much I read about the fatigue or how much my doctor reminds me, I’m tired because I have Autoimmune. But I’m convinced and determined that I will one day beat it. I will not give up and will never let Crohn’s take me down.

So I sleep….often. Sometimes I sleep A LOT. Like I did Freshman year in college. I used to take an entire weekend and sleep. No joke! My roommates thought I was quite odd.

These days I have figured out some things that I must do to ward off dehydration and the inevitable fatigue. There’s also something different these days. Because of Crohn’s, and largely because of Endometriosis, I now have an ileostomy. An ileostomy is like a colostomy. And an ostomy is what most people call “the bag.” When it comes to fluids, absorption and dehydration with an ostomy, think about a PVC pipe. Essentially most of what goes in, comes right out!

Although there is not one single diet that keeps flares away, there are things I can do to help prevent dehydration. Before I reach for anything else in the morning, I drink many oz. of fluids. They recommend something with nutrients such as milk. I eat a small bowl of plain oatmeal or a soy yogurt with Psyllium fiber. I take 4 of my 10 Imodium for the day. I eat about every 2 hours, snacking on pretzels or carrots with Fat Free Ranch or Hummus. Lunch may be a half of a Tuna, Ham, Cheese or Peanut Butter and Jelly sandwich. Any type of vegetables must be chewed extremely well. Although vegetables can cause obstructions, fiber tends to be my friend because it binds and thickens things and helps fluids get absorbed. I can also eat salad these days and corn of all things! Until last summer I hadn’t had corn for about 5 years! I stay away from Aspartame and fake sweeteners and avoid soda. I’ll drink watered down Gatorade and Unsweetened Soymilk. I really love Chocolate Soymilk! Dinner is awesome these days. I eat chicken, ribs, burgers, steak, salad, potatoes, Quinoa, vegetables, rice, seafood and more. I eat dessert but generally stay away from massive amounts of sugar.

With the ostomy, I have to drink lots of fluids interspersed with food to help things get absorbed. I cannot go more than 2 hours without eating and must also stay away from eating huge meals in one sitting. I do drink coffee but cannot have more than 1-2 cups per day. I completely avoid drinking alcohol. When I want to exercise I have to start hydrating about 2-3 hours before and drink a few oz. every 15 minutes or so. After I exercise or spend time in the sun or heat, I need to continue drinking for another 2-3 hours. Sometimes it feels like all I do is consume fluids! When any sign of dehydration sets in, I need to chill out and stop what I’m doing. I start to catch up with fluids and maybe take a rest or even lie down.

Some Final Thoughts on Dehydration
Long gone are the days when I thought that the doctor is always right. I am the only person who can be the best advocate for my body and mind. And only do I know myself best. I try to stay away from getting carried away with symptoms on the Internet. However, one of my best resources is the plethora of patient testimonials, chat rooms and discussion board where I can find other people with Crohn’s and ostomies and get accurate info about what is going on with my disease. Regarding dehydration, I have learned that my blood work chemistry does not always have to show electrolyte imbalances for me to feel symptoms of dehydration. Several of my doctors finally concurred that if I call them saying that I’m feeling dehydrated then I may need some IV fluids.

Unfortunately, I cannot bank hours of sleep like a camel does with water. But I can essentially bank my fluids so that I’m always ahead of the game.

Category: Autoimmune, Uncategorized

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