Adventures in Colitis

Bathroom business is a delicate subject.  One that most people prefer not to discuss.

Unfortunately for me, bathroom business has played a major role in my life.

In October of 1969, when I was 6 1/2 years old, I nearly died from a bowel obstruction.  I had been very sick for a long time, I can still remember the constant pain in my abdomen.  My mother kept taking me to the doctor who could not find the cause of my ailment.  Finally, one night as I lay limp and unresponsive in my mother’s arms, my desperate parents rushed me to the hospital where I underwent emergency surgery.  The surgeons discovered I had been suffering with a bowel obstruction that had become gangrenous and had burst, filling my body with toxic infection.  The doctors had to remove a portion of my large intestines and later told my parents that had they not brought me to the hospital that night, I would have been dead by morning.

Me in the hospital after my bowel resection in 1969.

I spent two weeks in the hospital and even after I went home my recovery was very slow.  I still have memories of laying atop the ironing board while my mother and sister gave me enemas.  Photos of me from that time show a very thin, pallid little girl with stringy, straight hair.  It was a long time before I had any appetite but even then my eyes were “bigger than my stomach” and it became a contest with my older sisters to “call” my food.  When we would go out to restaurants, I always ordered far more than I could eat and my parents, grateful to have me alive and eating anything, indulged me.  My two older sisters reaped the benefits as they would shout out, “I get Amy’s pudding” or “I get Amy’s French fries”.

Eventually I would grow into a hale and hearty adolescent with a healthy appetite but as a young adult I would do further damage to my digestive system by torturing my body with an eating disorder.  One of my tricks was to gorge on water whenever I ate anything I felt I shouldn’t.  In some instances I would drink nearly a gallon of water at a time.  This led to chronic diarrhea.  When I was hospitalized for my condition, I actually laughed out loud when the nurse asked me if I abused laxatives!  I had no need.

A few years after overcoming anorexia I was diagnosed with IBS.  Though not life threatening, it was a life altering condition that sometimes led to embarrassing episodes.  Eventually I learned my trigger foods – nuts, corn, sunflower seeds, poppy seeds, chives, leaf lettuce, etc – and was able to keep it under fairly good control with diet.  I also used Immodium in social situations or whenever I was concerned with being out in public and having an attack.  For the past few years my IBS has given me little trouble as I have learned what to avoid and how to control it.  It was a fact of my life that I had learned to live with and it no longer ruled my life.

Nearly two-and-a-half months ago all of that changed.  In mid-December I woke one morning with a terribly upset stomach and diarrhea.  We had hosted a party the night before so my first assumption was that I had eaten something that had irritated my IBS.  A week later, when I was still experiencing abdominal pain every morning and was still running to the bathroom 10 or 12 times a day, I decided it must be the stress of the holidays and that my colon was merely inflamed from the IBS attack.  By Christmas morning, I was beginning to get worried as I had never experienced these kinds of symptoms for such a long stretch of time before.

After Christmas I decided it was time to consult my doctor about my problem but she was more concerned with my one cup of decaffeinated coffee a day than she was anything else.  Her obsession with my caffeine intake resulted in my storming out of her office in a red-headed fit of temper.  (Perhaps a story for another day.)  I felt she was not taking my physical distress seriously.  Later she called me back into her office where she diagnosed me with infectious colitis and put me on a strong antibiotic.  Later, tests would show I did not have infectious colitis, or celiac disease or a parasite.  I was referred to a gastroenterologist.

My appointment with the gastroenterologist was scheduled for January 2, the day we got hit with our first of many huge snow storms.  The doctor’s office closed due to the snow emergency and my appointment was rescheduled for nearly two weeks later – January 13.  Of course, when I finally got to see the gastroenterologist he couldn’t do anything without first performing a colonoscopy, so that was scheduled for a week later.

I continued to suffer with symptoms – abdominal pain and chronic diarrhea – and lost nearly ten pounds, about the only good thing to come out of this whole ordeal!  As anyone who has had a colonoscopy knows, the preparation for the procedure is horrendous.  It was even worse for me because I already had so little in my system and I ended up throwing up all the Miralax liquid I had to drink.  During the procedure my doctor took some biopsies and afterward said that he wanted to order a CT scan.  At the end of January I went for the CT scan with dye contrast, which was another ordeal I would prefer to not re-live.  As soon as the technician gave me the three containers of barium I was to drink, I told her there was NO WAY that was all going in me.  I told her what happened with the colonoscopy prep and that I had been able to eat very little food for the past month.  I did manage to get two of the vials of barium down but that was my limit.  Thankfully, the technician was able to perform the scan adequately with just that much in my system.

Then began my wait to hear results.  After more than a week after my CT scan, when I still had not heard from my doctor’s office, I finally called to see if they knew anything.  The nurse was rather abrupt on the phone and merely told me that the biopsies came back benign and have a nice day.  As I sat here, phone in hand, I nearly burst into tears.  Not from the GOOD news that I didn’t have colon cancer, but from the thought that I was never going to find out what I DID have and what to do about it.  Thankfully, a short while later another person from the office called to tell me the results from the CT scan and that the doctor wanted to see me for a follow up to discuss the results.

February 10, eight weeks after the on-set of my symptoms, I met with my gastroenterologist to go over what my tests had revealed.  He told me the colonoscopy had looked good; no sign of Crohn’s disease or diverticulitis, no polyps.  The biopsies, he said, were “99% clear” but pointed to Lymphocytic colitis.  The CT scan had shown something funny with the way my stomach empties into the small bowel and some ovarian cysts, but nothing he was concerned about.  Giving me a prescription for a medication to help with the colitis, he sent me on my way.  At the pharmacy, when I went to fill the prescription, I got quite a sticker shock!  The medication was going to cost me more than $400 unless I could get a savings card through the drug company.  I chose to wait, wanting to do more research before I invested such a large sum of money.

Lymphocytic colitis, the least of all the colitises, is an auto-immune disorder resulting in too many white blood cells in the lining of the colon.  It is a microscopic colitis, meaning it can only be detected through biopsy samples being examined under a microscope.  It is one of several diseases under the umbrella of Inflammatory Bowel Disease, (although classified separately from Crohn’s and ulcerative colitis) thankfully one that does not have a large chance of becoming colon cancer.  I have been spending a lot of time on the internet and at the library trying to educate myself on this disease, and also the medication my doctor prescribed.

Throughout this ordeal, I have gotten a lot of well-meaning advice, some of which has been helpful, some of which has been hurtful.  Everything from drinking aloe vera water to going paleo; from eating yogurt to trying the GAPS diet.  I have drank a fairly noxious concoction of Bragg’s vinegar, water and honey (with no noticeable effect), taken probiotics and eaten yogurt, which sometimes goes right through me within 20 minutes.  I even gave up coffee for herbal tea, not that it did a bit of good.  I don’t want to sound ungrateful but in all honesty, sometimes I wish people would keep their helpful advice to themselves.  I know they mean well, I know they care about me and are just trying to help, but the truth is most days I don’t feel very well.  I’m tired and I really just want it all to stop so I can go back to living normally again.

After the New Year I began working three afternoons at a second preschool.  (I teach 5 mornings a week at one school and 3 afternoons a week at another.)  Thankfully, my co-workers at both schools are very understanding of my current situation and know what it means when I suddenly rush out of my classroom headed toward the bathroom – which thankfully hasn’t happened too frequently.  The extra hours of teaching have added to my fatigue and some days I feel overwhelmed and exhausted.

I have bad days and better days.  After doing research on the medication my doctor prescribed (Lialda), I had pretty much convinced myself that I was not going to take it.  One of the primary side effects of the medicine is ulcerative colitis and this was of great concern to me.  Then I had three fairly bad days and developed sores on my backside which led me to reconsider my decision.  When I tried to discuss going on the medication with my husband it led to a fairly heated argument as he was concerned with the long-term cost.  For some reason he thought I would need to take the medication for the rest of my life but from my research the average time to achieve remission of symptoms is eight weeks.  Of course, the day after starting the medication I had bloody diarrhea which was a bit unsettling.  (My doctor had given me samples of the medication to get started and I was able to download a pharmacy savings card from the manufacturer’s web site which will save approximately $120 a month on the cost of the prescription.)

I’ve had to deal with a lot of guilt because of the financial cost of this illness.  It cost more than $400 just to determine I did not have infectious colitis, a parasite or celiac disease.  I don’t even want to think about the cost of the colonoscopy and CT scan!  Some days I wish I never would have said anything and just continued to suffer through – but that, I know, is silly.  We have insurance, for which I am grateful, but we have a large deductible.  We also have a health saving account to pay the costs, but I never dreamed I could wipe out a significant chunk of it with a single illness, especially one as unglamorous as colitis!

From the research I’ve done, I know I am going to have to make some major dietary changes.  Overall we eat fairly healthily, but my big downfall is sugar – namely chocolate – and sugar is awful for inflammation.  It’s going to take a lot of discipline and commitment on my part to take charge of my health and make the changes needed to heal my digestive system.  I’m going to need a lot of support and encouragement.

Yes, bathroom business is a delicate subject, one most people don’t want to talk about.  For those who don’t live with IBD, it’s hard to understand how this disease affects almost every aspect of a person’s life.  If you know someone living with an Inflammatory Bowel Disease such as Crohn’s or colitis, I would like to encourage you to have an extra dose of patience, compassion and understanding.  Trust me, I’ve learned from experience that nothing about this condition is fun.  And even though I don’t feel comfortable discussing details of my symptoms – and I know no one wants to hear them! – a little compassion and understanding goes a long way.

And please, keep the advice to a minimum. 🙂