Tuesday, February 17, 2015

Back to Basics

It's been harder to find time to blog about this journey than I expected!  Granted, I should have known that with 2 small children, a house, and a job... that anything non-essential would be sporadic.

Good things that have happened over the past 3 weeks:
  • Today is Day 53 of the diet, and I'm still alive!
  • I've tapered to 10 mg of Prednisone
  • We found help for the baby while husband's Mom is away for 3 months
  • I'm starting to feel in control of my life again
  • I got to see my family to celebrate my dad's 65th birthday!
  • My son slept through the night for the first (and only?) time!
  • He also got his first 2 teeth!
Bad things that have happened over the past 3 weeks:
  • My son got his first 2 teeth...
  • My house (and greater family) has been struck by the plague
  • Very cold and lots of snow = 2 year old is BOUNCING OFF THE WALLS
  • I've watched Frozen way too many times
  • I was in total despair about my guts being bad again, but I may have figured out the problem(s)

My colitis had been improving with this new diet... and then it wasn't.  And then it was getting worse!  I was following the 3 day rule for introducing new things... but hadn't noticed anything in particular that could explain why I was getting sicker.

While things got bad, I tried one last infusion of Remicade, but we've declared it a failure (again).  I am scheduled to start Entyvio next Monday, February 23rd, as long as I don't catch the plague that my children have been spreading all around... I'm the last man standing, believe it or not!  (Everyone has had stomach problems with this virus... they're getting a little insight into my world!)

I couldn't just sit around waiting for my Entyvio infusion; I was despairing at the lack of control over my body!  I noticed that I was having major trouble with sugary things like juice and honey, so I wondered if I was having a problem with fructose malabsorption.  I read that this can be caused by SIBO (small intestinal bacterial overgrowth), so I cut out the little remaining sugar I had left for a week or so.  This meant no carrots, only certain squashes, no honey, and no bananas!  I haven't had cravings in a while, but this caused some major cravings, which made me hopeful that it was working to kill off some of that bacteria potentially causing my sugar troubles.  I'm still treading carefully, but have started eating a little bit of the more sugary squashes again, as well as some honey and bananas and so far it seems like I might be doing better.

A lot of people insist that dairy is a problem, but I kept saying that it wasn't for me, since I had given it up for substantial periods of time while breastfeeding both children.  However, looking back at my food diary, my downhill trek did start the week after I introduced yogurt...so perhaps I was having some kind of slower-to-show reaction to dairy.  Realizing this, I binged on cheese (I love cheese), and then committed to a modified intro diet (some spices, zucchini instead of carrots) for 3 days, then I'll continue the diet without dairy and see how it goes.  So far this seems to have helped!  I feel like I'm regaining some control.

A third thing, which complicates everything, is that I think my colitis is very strongly tied to my hormones. This could be uncomfortable for some people to read, so proceed with caution!

Looking back, I think I often suffered from miniature colitis flares on a monthly basis.  I was on birth control for a while and this became less of an issue... but then I stopped birth control and started a family.  I didn't know I had colitis until about 2 months into my first pregnancy, when it came on full blast.  The 2nd time I was pregnant, I knew based on my colitis symptoms... the pregnancy test was just a confirmation.  This past summer I was improving after the birth of my son, but I don't want to be having any more children anytime soon (or ever considering how poorly my body handles pregnancy, but boy I make cute kids!), so I let my OBGYN talk me into trying the Mirena IUD.  Our hope was that in addition to easy birth control, the IUD would help me have very light menstrual periods so that I could potentially see only minor colitis symptoms flare up each month.  Unfortunately, around the same time I had the IUD put in, my colitis got a lot worse again.  I noticed that my abdominal cramping took on more of a "menstrual" cramp feeling a lot of the time, almost like I was having period cramps instead of diarrhea cramps.  I didn't think much of it since after an IUD is implanted it takes a while for things to regulate, and I figured I was having both colitis and menstrual cramps.  Fast forward nearly 6 months, and I was still having this sensation of menstrual cramps frequently.  So, last week I had the OBGYN remove the IUD in case it was exacerbating my colitis.  This overlapped with my step back to square one of diet so I can't be sure what is responsible for what... but my colitis began to improve the very next day!



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