I travelled this weekend.  I had a blast, managed to keep the stress to a minimum, and ate carefully to reduce my chances of a flare-up.  I was doing great until…

… I got to Union Station, Los Angeles, and was told the bathrooms were closed.

I had checked ahead of time when I made my reservations.  I was supposed to have thirty minutes to use the bathroom before they closed up for three hours.  (I won’t even go into the idiocy of closing an entire major station for three hours just to clean.  Sectional cleaning, anyone?)

My bus arrived 35 minutes late.  This meant the bathrooms had been closed for five minutes and I was out of luck.  I needed a bathroom, but not desperately, so I thought I could manage.

UC doesn’t like it much when you hold off using the bathroom.

An hour later, I passed out.  When I came to, I’d had an accident and still felt awful.  Much as I hated to do it, I lay down on the floor of Union Station with my suitcase as my pillow until the bathroom would open.  Apparently, security didn’t like that and told me I couldn’t sleep on the floor.

“I’m not sleeping, I’m sick.”

“You can’t lie on the floor.”

“I need a bathroom.”

“Bathrooms are closed.”

“Then I’m lying on the floor.”

Apparently he eventually realized I was actually sick and found a way to get me into a bathroom.  I was able to change my clothing, but I was out of wet wipes, so I couldn’t even do a decent job of cleaning myself up.  Maybe I shouldn’t have been so embarrassed to smell like one of the homeless people who live in and around the station, but I did.  I also felt awful… UC drains me.  Since I couldn’t lie down inside, I went out to a bench (security guard nearby) and went back to sleep until things got fixed.  Then I had to go home, rather than go to work, because I could barely stand up straight.

All of this would’ve been okay if I could have just used the bathroom when I needed to in the first place.  I can’t even think of a real solution to this one, since I had planned for the thirty minute window to use the bathroom “just in case”.  It’s just one more of the joys of having an “invisible” disease that people don’t know about.  Crohn’s, because of the gluten allergy, is more well-known.  Ulcerative colitis is like speaking Latin.

If nothing else, this incident definitely didn’t make me a fan of Union Station and reinforced for me the need to scout out bathrooms before I go places.

You know… like normal people.

 

 

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I am generally what you’d call a high-energy person.  My boyfriend calls me the Energizer Bunny, for example.  I usually need a little less sleep (actually need less, not just run on less).  I wake up ready to go and full of energy.  I have to wind down to make myself sleep at night.

At least, that’s what my life is like when my ulcerative colitis doesn’t take center stage.

Most of the time, UC is about food choices, reducing stress, and dealing with urgent bathroom issues most people don’t need to stress over unless they overdid the Taco Bell the night before.  Sometimes, though, UC is about energy.

Because of my UC, I can’t eat as many things.  A good-sized salad, for example, is generally a bad idea.  Because of that, I sometimes lack nutrients even though I eat with a deliberate eye toward nutrition.  Lack of nutrients can add up… and tear down.

This last week, I have been exhausted.  Some of that I can attribute to monthly hormonal fluctuations; some of it to a hard training schedule for my first half-marathon.  But most of the lack of energy, I suspect, is from the UC flare-up I had the week before.

Being this tired makes me feel like a different person.  Rather than juggling multiple items, I struggle to keep one aloft.  Maintaining relationships is always a struggle for my introvert self; when I’m tired, it becomes an “I’ll get to it later” concept.  I feel a bit disconnected from the world at large.

There’s really nothing I can do about it but ride it out, but I feel less me while I do it.  That’s one of the hidden side effects of this chronic illness.

At least I can look forward to my better days as I work my way through these more low-key ones.  For that, I am grateful.

Hiatus

July 30, 2013

As I’ve mentioned, my kids are on summer break.  I also have a 3 1/2 hour commute each day… AND my coworkers have all been taking vacation.  Couple that with my first ulcerative colitis flare-up in six months and I just don’t have a lot of energy for blogging.

I’m hoping to get back into the swing of things next week.  For now, please be patient with me.

Here are a few articles about ulcerative colitis, for those who are curious about UC:

 

Well, it appears to be official.  I avoided gluten for most of my 30-day cleanse.  There were small amounts here and there, but nothing significant.

Thursday night I had one-half of a foot-long Subway sandwich, thinking I was making a fairly safe choice.  I was bloated, mildly crampy, and generally unhappy in less than two hours.  My body pretty much purged itself of everything I’d eaten.

I thought, at the time, that maybe I’d just tried to come off the cleanse too fast; I went ahead and had my second half for lunch on Friday.

This time, less than a full hour and I was crampy, in the bathroom, and feeling very “off”.  Even my sinuses seemed to be worse.

I’ve never been tested for a gluten sensitivity, but empirical evidence certainly seems to point toward a strong probability.

I’m going to take most gluten back out of my diet and see how I feel in a few days.

Alright, this detox thing is hard and, I have to admit, expensive.  Maybe it’s because I’m not used to it (I’ve never done one before) and don’t have the resources set up to do this.  Maybe I didn’t have a lot to detoxify (doubtful).  But doing this has been very, very difficult, especially on a tight budget.

I haven’t been doing my health journal.  I started out strong (and I did do my weigh-in last Friday), but I am so tired by the time I get home, make a from-scratch meal, make my meals for the next day, and get ready for bed that I just don’t feel like writing.  Still, I’ve planned out most of my meals and, even though I’m not being perfect about my plans, I’m sticking to it pretty closely.

I’ve only missed drinking my lemon water (always lukewarm) twice so far.  Once I made it up in the evening.  The second time I just skipped it.  I’m not certain it’s helping, but my colitis has been behaving.

I ordered my non-BPA bottles finally; can’t wait for them to get here.  I’ve been drinking around 64 ounces every day (eight 8-oz glasses), but by body weight, I should be drinking more like 75.  Seems like it would be easier if I could refill with healthy, filtered water anywhere.  I slipped up once and had a soda.  It didn’t really even taste good, but I was very tired and in need of caffeine.  I decided one drink wasn’t bad.

I slipped up on fast food/ processed food a few times.  I tried to make healthier choices when I did it, but tiredness and finances were a factor.  I sincerely doubt I will ever do a full month cleanse again.

I’ve been much better about sugar than anything else.  Fruit is starting to taste very sweet again… a nice result.

I joined my gym… I have yet to use it.  There have been various factors (time, mostly, but also the fact that I’ve started biking 9 miles a day in my work commute.

I’m in the process of reading The Martha’s Vineyard Diet Detox.  It recommends a 21-day detox, another affirmation that a month is just too long.

I was doing better about using the farmers’ market before I started this.  Again, I’m tired and money is tight from the detox.

I haven’t found a good place for fresh fish, which is ridiculous, since I live 15 miles from the ocean.  I’ll try to work on that tonight.  I also didn’t do my recharge day in nature, but it was very cold this last weekend.

I’ve cut out grains (except when I’ve slipped up).  I really like quinoa, but am limiting myself to one serving every day or two.

I have a good source for grass-fed beef and haven’t had non-grass-fed beef so far this month.  Now I’ll try to not have any more red meat until the detox ends.  I also have a loofah for the shower, but not a dry brush.  I decided the dry scrubbing (tried with the loofah) was uncomfortable and made my skin a pretty shade of ouch.

I’m doing it out of order, but tonight I’m going to do a facial.  I like facials; it’s one of the few girlie things I like to do.  Maybe it will relax me and help me sleep better.

Sorry this post is so long.  There are just so many details… I could already fill a book.  More to come soon.

 

I thought I’d spend some time on “hidden” illnesses; ones where the person is ill and you may not even know it.  Because of my personal relationship with it, I’m going to start with ulcerative colitis.

Illustration of Human Intestines

Ulcerative colitis is an inflammatory bowel disease or digestive disorder (WebMD lists both).  It is related to Crohn’s Disease, but while Crohn’s affects the entire digestive system, UC affects only the colon (large intestine) and rectum.  Ulcers form on the inside of the digestive tract and there is considerable inflammation.  The more of the digestive tract that is affected, the worse the symptoms may be.

Symptoms include belly pain and cramping, diahrrea, and sometimes bleeding.  In more severe cases, there may be a fever, weight loss, and/ or extreme diahrrea (which increases the risk of dehydration).

Most people will go months or even years without symptoms (remission), then have a flare-up.  For me, it can come on without any warning the first time, then recede slightly, but continue to have flare-ups for several weeks.  Then it will go away for a while.  I have gone years without it, but I’m currently in a high-stress lifestyle, so I have flare-ups more often.

When a flare-up occurs, my intestine gets inflammed (sometimes causing pain and cramping, but not always).  My food will backup and not be digested fully until the pressure/pain is too much.  Then, uncontrollable diahrrea, sometimes (for me) accompanied by passing out from the blood all flowing to the inflammed area.

Diagnosis of UC includes talking about symptoms, a physical exam, and a number of tests including a colonoscopy, possible biopsy, blood tests, and stool tests.

Medication for UC includes steroids (short term), immunomodulators to control the immune system, aminosalicylates to reduce symptoms or prevent flare-ups, and over-the-counter diahrrea medication like Immodium.

Certain foods seem to irritate UC more than others.  I try to avoid popcorn, nitrates (like those found in bacon, pepperoni, or hotdogs), iceberg lettuce, much caffeine or alcohol, and anything very acidic.

Because vitamin deficiency and dehydration are two very real risks with UC, I try to drink a lot of water and eat as balanced of a diet as I can.  I do more hard cheeses and yogurts to get my dairy, I vary my vegetables (but rarely do salads), cut out a lot of processed foods, and when nothing else works, I go for a liquid diet or a one-meal fast.  A lot of times missing one meal will give my body enough of a break that I can recover more quickly and get back to “regular life”.

UC requires a few lifestyle changes.  I try to always know where a bathroom is and I’ve had to make do in an emergency.  I keep a “flare-up kit” on me that includes a change of underwear, sanitary pad, plastic bag/baggies, and wipes.  I’ve learned to stop apologizing for being sick (usually) and to just adapt.  I haven’t learned to completely give up popcorn or caffeine or exercise, but I try to moderate all three.

There are worse invisible diseases to live with, but there are definite risks for UC.  I could have to have surgery at some point, and my risk of colon cancer is higher than the general population.  As healthily as I try to eat, I could be malnourished or dehydrated at any time.  I’ve passed out in some scary situations (never, ever on the road or I’d just stop driving altogether).  Still, it’s not life-threatening in itself and I can still have good quality of life living with it.  But the next time someone makes a mad dash for the bathroom or, worse, embarasses themselves by not getting there in time, know that they could be suffering from UC.. and have a little sympathy.