Life with Microscopic Colitis: Managing Holiday Travel

Posted December 29th, 2011 by

You may have heard of inflammatory bowel disease (IBD), but have you heard of microscopic colitis?  One of several conditions under the IBD umbrella, this chronic, inflammatory disorder of the colon (aka the large intestine) can cause watery diarrhea and abdominal pain.  It gets its name from the fact that microscopic examination of the intestinal tissue is required to diagnose it.

A Snapshot of the Microscopic Colitis Community at PatientsLikeMe

While less severe than other forms of IBD, microscopic colitis can cause considerable discomfort.  Combine that with the stress, long hours and unpredictability of holiday travel, and you can imagine the challenges.  What do our 24 members with microscopic colitis (80% of whom are female) have to say about this annual ordeal?  Here is a sampling of their stories and advice:

  • “Yes, only people with colitis know how important a bathroom is!  I am so glad to have found others with this problem.  When I talk about it, nobody knows what it is. I have to ride to Chicago at the end of this month, and it is a five-hour drive.  It makes me so nervous to be in the car for that long. I am already stressing over it. Thank goodness it is my son taking me there so I can say pull over fast.”
  • “I reduced my caffeine (coffee), that seems to help somewhat, but I have flare ups.  I also have bladder issues.  I also had colitis for quite a long time before being diagnosed.  About the bathroom thing, I know all the bathrooms en route too, and I sleep closest to the bathroom. (Actually when were looking for a house, that was a requirement for me to have a toilet/bathroom next to me.)”
  • “There is a gas station, convenience store, or restaurant at almost every exit. If you explain why you need to use their bathroom, they usually let you. My GI specialist also has me on Colestipol, which is much better than the Imodium-type drugs. The Colestipol I only have to take twice a day, and it is much more effective. I can usually avoid eating anything before leaving, and usually don’t have a problem with trips that long.”

For those with microscopic colitis or other forms of IBD, going to grandmother’s house for the holidays can be quite a different story.  Fortunately, you’re not alone.  At PatientsLikeMe, we have 27 patients who report IBD, and more than 4,400 members subscribed to our Intestinal and Digestive Health Forum.  Need a little support this holiday season?  Log on to PatientsLikeMe to share and learn with those who can truly relate.


56 Comments

  1. To make a long story short, I developed MC after taking a very strong antibiotic for a tooth abbess. Colonoscopy showed MC. After almost 2 years of explosive loose bowel movements, diet restriction (Fodmap), Pepto, and praying….I got lucky… My granddaughter is into Shakeology and finally talked me into trying it. It took 2 and 1/2 months but all of a sudden pretty poops!! I’ts been almost a month now and…what a relief.. its still all good.. Talked to my primary doctor and she raved about the product ..that was a surprise! I’m not trying to sell the product, just thought if I could help someone, I would mention it. Try RaisingWellness.com and go to the contact page. Good luck to you all…hope you get rid of the beast!

  2. Nausea and pain along with the D. I took Entocort for the prescribed amount of time and then after tapering off of it completely as prescribed by my GI doctor I was fine for almost 3 months. Now the nausea, pain and D are back. I am hoping someone on this site can tell me about their experiences. How do you deal with the nausea especially (I do not vomit, but have no appetite). Thank you.

  3. Karen Lerum, I had to go through 3 rounds of Entocort (9 months of being on a steroid), each time I relapsed sooner. My Gastro doc said I’d never be well unless I went off of Diclofenac for arthritis. I’d been on it for years. It can cause MC big time. I’ve been off Diclofenac 6 months and no more MC. I also have IBS and Scleroderma Gut (gross) so my diet is very restricted. I never had nausea just severe stomach cramps & lots of D, I lost 20 pounds. I have little flares of one or the other, how to know I’m not sure, but only for a day or two. Of course my arthritis pain is my problem now. Hope you find relief soon.

  4. I was diagnosed several years ago. Believe it was caused by Zoloft which I’ve been taking for 10 to 15 years. Tried eliminating certain foods & drinks. Nothing really worked. Was taking fairly small amount of fiber (capsules). I am now taking up to 18 capsules a day. Seems to be working. Stomach pain & burning pretty much disappeared! Maybe this can help others.

  5. All I know is this condition is very hard to understand. I’ve always had stomach problems and it took years for them to diagnose me. The Entocort works for me. I only take it until the ugly symptoms go away( kind of putting it into remission) this last about 6-8 weeks then it all comes back and I start all over.
    I did want to see if anyone gets sweats or faint or dehydration?

  6. I was diagnosed with MC a few years ago. When it started, I wasn’t on many medications, just the hormone therapy I’d been on for 2.5 years for treating breast cancer. It started in March/April, with crazy gas, cramps, and bloating. I think this may have been from a virus that had also given me stomach problems. After I was diagnosed, I started entocort. It helped. During my taper down time, I had surgery, followed by an infection, hospitalization, contracting c. diff, being on a ton of drugs for that, then everything went back to normal. It was odd. Kinda like a reset, if you will.
    That was in January, last year, and I made it all the way to October, no problems. Then I got a cold, took an ibuprofen, which I had taken sporadically since the “reset” with no problem, but this time, nope.
    I had crazy diarrhea, incontinence, and dropped weight at an alarmingly fast rate. And my job had me in the field at the time. It was miserable. They did a sigmoidoscopy to diagnose, and there it was, MC.

    Since then, I’ve been on the entocort. 9mg daily, and trying to step down to 6mg. I know certain raw veggies, slightly more beans than minimal intake, too much fat, or dairy, can make me cramp really bad with GI upset. Sometimes, I have no clue what’s causing the problem. It’s frustrating, because I pay very careful attention to what I consume. I can go weeks without pain, then all of a sudden, there’s a problem.

    It’s definitely not easy to live with, and yes, traveling is carefully planned. I hope I can get off of the steroid soon to see where my body is.

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