Wednesday, February 6, 2013

Living with Chronic GI Disorders

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I receive numerous emails in response to my medical issues page.A lot of people know their diagnosis and ask for tips on how to deal with the pain and ask what medications I'm on. Others are, like me, without a diagnosis and want to know what kind of tests I have been through. One common topic in ever email is they want to know they are not alone in their pain. They want to connect with others who understand their pain and what they are going through.

I asked Beka of Kvetchin' Kitchen to write a guest post to get another person's take on chronic GI issues. She shares tips and tricks on how she deals with her disease. I hope others find this helpful and know that you are not alone with GI pain; there are others, like Beka and myself, who know exactly what is is to live with chronic pain. And please feel to continue contact me at surlykitchen@gmail about GI issues. I make an effort to answer every email as quickly as possible.

A HUGE thank you to Beka for sharing her story, tips and tricks; it certainly helped me.

Chronic illness is a difficult burden to bear by anyone. Some diseases have very physical symptoms that may make it obvious they are struggling (whether or not you want to share that information). Other diseases, especially GI issues, are silent struggles. Like any other invisible disease, the symptoms are difficult to talk about, and you are often forced to struggle in silence. It can sound so whiney – “I’m tired”,“my tummy hurts”, “I don’t feel good” are all basic symptoms of a GI flair (fatigue,cramping, and malaise). They’re fundamental experiences of being unwell, but unless your boss or friends or family really understand how bad the pain can be, they might think “Who goes home for a stomach-ache?”

I live with Crohn’s disease – a disease very different in etiology from eosinophilic gastritis, but shares many of the same symptoms. I recently posted some of my best tips about how I get through my frequent colonoscopies (something even healthy people can relate to), but I’m here on Surly Kitchen today to talk about how I cope with flairs. Let me start by saying that no matter how subtle your symptoms are, just because no one else can see them, doesn’t mean you’re crazy. You are not crazy. You might feel sick a lot of the time. You might go from remission to flair in a matter of days. And the symptoms might disappear just as quickly. But you’re still not crazy. You: not crazy. Remember that. Sometimes it’s all you need to hear to handle that one last terrible gut cramp. That may be all you need – someone who’s been there to pat you on the shoulder and say that they’ve been there, too, and it’s just as bad as you feel. It’s okay.

Next… how I handle my symptoms.

Cramps: the challenge with GI cramps (caused by ulcers, inflammation, or irritation)is that they are on smooth muscle. Most over the counter medications (like Tylenol or Aleve) work the best on skeletal muscles. I’ve found that these OTC meds don’t do much for me. And my pain (luckily) is not chronic or severe enough to warrant prescription pain medications. I’ve tried a few things that seem to work… heat packs are my favorite. There are stick-on self-heating pads that work great. Also – heating blankets, or those microwave rice satchels are great, too. Distraction is also a great technique – I work in an office, so it’s easy to throw myself into some paperwork and forget the pain, but things like knitting, writing, or even getting into your favorite show or movie will help. I also heard from a massage therapist (if you’re into that sort of thing) that taking magnesium can help ease smooth muscle. I have tried it, and it seemed to work, but I haven’t spoken to any physician who endorses this, and it is a fat-soluble mineral, so it’s possible to over-dose and get a build-up in your system. I don’t use this anymore, but I did a few years ago when my pain was more frequent.

Fatigue: even more than the pain, I hate this side effect. I get so sleepy. I have to be careful with coffee to compensate for the fatigue because harsh stimulants can exacerbate my symptoms. The most effective treatment for me is prevention: exercise. When I was feeling my worst, I had something low-impact activities I liked. It was just enough to get my off the couch. For a long time, I primarily used a Gaiam-produced Pilates video that came with an exercise band. Low-impact, stretching, and strength training. Even yoga or just taking a short walk will increase blood flow and help both fatigue and any cramps (double bonus!)

Nausea or loss of appetite: Problem: everything you eat makes you sick. Dilemma:you need to eat and get vitamins to get better. Solution: have a go-to meal that youcan keep down. For me, I like soup over cooked white rice. When I’m really sick, just broth and cooked rice. My favorite is a good egg flower soup (no vegetables) over cooked rice. It might be a bagel with cream cheese. Maybe noodles. Boiled chicken with peeled potatoes. Just know your body well-enough to know what you can eat. It may take time and experimentation, but this will be an important part of getting better.

Speaking of knowing your body… Know when to push it and know when to rest. For example, sometimes, it’s okay to succumb to fatigue and just rest on the couch all day (seriously). And other times, you will feel better if you just stand up, walk around, and try your hardest to get through your normal routine. Few hours later, you may be running at 80% (instead of 30%). If you push it when you shouldn’t, you may end up at 10% (down from 30%). Knowing your body is really one of the hardest challenges of chronic disease. It’s something that I still struggle with. It frustrates me. I get mad at myself. Mad at Crohn’s. Mad at my doctor. And all those feelings are valid. And then the anger passes, I try not to feel sorry for myself, and I try to find something that makes me feel better.

I’m not going anywhere, but neither is my disease. I try to find balance – sometimes I get my way, but sometimes I have to let Crohn’s have a day (so that it doesn’t get a week). I have friends that understand that I’m sick (not a flake). I have a husband that understands the subtle urgency behind “I have to use the bathroom”. And I have a wonderful family that understands that sometimes this 20-something needs to nap as much as grandma.

So my last piece of advice: make sure you have people in your life that really understand how your disease makes your feel, because that’s the first step in feeling better.

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