My Crohn's Story - Part 2

*TMI warning!  The following blog post may contain poop.  (Don't say you weren't warned.)

After my initial Crohn's diagnosis, my doctor put me on Salofalk and iron pills. Salofalk is an anti-inflammatory drug (in the 5-ASA class) that targets the terminal ileum.  It can reduce inflammation and prevent flare ups.  It also has an anti-oxidant effect, and may even reduce the possibility of bowel cancers.

I stayed on the iron until my hemoglobin levels came back up.  I also made an effort to eat more iron dense foods like red meat, liverwurst, spinach, almonds and pumpkin seeds.  In the meanwhile, I was waiting to be booked for an MRI enterography.  MRI is better than CT for monitoring Crohn's disease, because there is no radiation exposure involved.  I will probably need to have imaging once a year or so to track my progress, so reducing radiation exposure is definitely a plus.

I spent the summer of 2012 seeing a holistic nutritionist in the hope that I could get my intestinal inflammation under control through diet.  I knew that if the MRI results didn't show an improvement in my intestine over the CT scan, I was headed for needing drugs that were a lot stronger and a lot scarier than Salofalk.  It was during this time with the nutritionist that I began to realize that I did have symptoms of Crohn's. I started to track my food, sleep, bowel movements, mood, energy, etc.  It quickly became clear that I was having a lot of loose and urgent bowel movements.  This was nothing new for me, but I guess I was just used to it, and, let's face it, poop is not something we usually discuss and compare with our friends, so how are we supposed to know what's normal and what's not?

Over the summer, I learned how to reduce inflammatory foods from my diet, including gluten, dairy and processed foods.  I took probiotics, fish oil, kefir, chia seeds, flax oil, spirulina and raw honey.  I bought all my veggies, fruit and eggs from a local farm.  I got my diarrhea under control.  I also lost 15 pounds.  Yay, me!

Then, in late summer, I had my first MRI scan.  The results were not good.  The inflammation was just as bad as on the CT scan, and in addition, this scan showed I had a couple of strictures.  Strictures are narrowed areas of the intestine which can become obstructed.  Finally it clicked into place for me.  I do have Crohn's.   I have probably had it for decades.

Ever since I was in university, I have had occasional abdominal pains which I called "my attacks".  It starts off with a crampy feeling, the pains gradually get stronger and closer together, and after several hours, I will vomit green, nasty-tasting bile.  The pain is all-encompassing; it doesn't leave me any resources to do anything beyond hunkering down and waiting for it to pass.  The attack typically lasts about 12 hours. Eventually the pains ease off, but I am left with a belly that feels like it's been kicked by a donkey for the next day or two.

The first time I experienced this, I went to the emerg, convinced I was dying.  They couldn't find a cause for my pain.  My doctor at the time diagnosed me as having "reverse peristalsis", in which a wave of peristalisis would go the wrong way, up my intestine instead of down.  When it met a normal peristaltic wave, it caused an extra strong, crampy contraction.  I was given a motility drug, Prepulsid, which worked great for me for many years.  Unfortunately Prepulsid got taken off the market in 2000 for causing heart attacks or something.  Bummer.

By that time, though "my attacks" had become much further apart.  Maybe once a year, maybe not even that often.  So when I did get one, I just suffered through it with Tylenol 3 and rest.

Now I see that these attacks are actually partial bowel obtructions.  They often occur after I have eaten something with a lot of fiber, like nuts or raw vegetables.

My doctor wanted me to quit the Salofalk and start taking an immunosuppressant.   This was the thing I had been wanting to avoid with all the dietary changes I had been making.  Immunosupressants, as the name suggests, reduce the functioning of your immune system.  Taking them would mean I would be more susceptible to every passing germ, and I work in a hospital, often exposed to the worst, most antibiotic resistant germs!  There would also be a small chance of developing cancer on these drugs.  On the other hand, untreated Crohn's could lead to many complications, including complete obstruction, fistulas, accesses and the need for surgery, perhaps even the removal of part of my intestine.  He gave me a month to think it over.

I have to admit, I became quite depressed around this time.  I felt sad, I felt angry, I felt helpless.  It seemed like I was trapped between two almost equally bad choices.  I felt like I was grieving for my image of myself as a healthy person. On the worst day, I had to deal with a particularly nasty patient at work, and after she left, I just started crying and couldn't stop.  I had to go home.

In the end, I decided to take the immunosuppresants.  I am now taking Imuran, and I have been for about 6 months.  I feel good so far, and haven't been sick yet this winter.  I am booked for another MRI in April, and I'm hoping to see some improvement by then.  My other symptoms are improved, although I have had 2 partial obstructions since starting the Imuran.

Emotionally, I am feeling much, much better.  I don't accept that I am helpless to fight this disease.  I am using my Crohn's as the excuse I needed to make my health a priority.  I am eating better, though there is room for improvement.  I am prioritizing sleep.  I am planning on starting to walk outside after dinner.  Ironically, I am probably "healthier" now, than I ever have been before.

I am focusing on an "attitude of gratitude".  There is so much to celebrate in my life.  Especially all my wonderful, supportive friends, family and coworkers.  (Yeah, you!)

If you have stayed with me long enough to read all this,  I'd like to invite you to stay with me just a bit longer, and help me in raising money for Crohn’s and Colitis research.  On Sunday, June 8th I will be joining IBD supporters across Canada in the annual Gutsy Walk.  You can make your donation here.  I will be leaving the link up in the sidebar from now until after the walk.  Thank you.

In Other News...

This has not been a great week.  You know how when you start out a new project and you are filled with excitement and motivation, but then as time goes on your enthusiasm starts to flag?  Well, that's me this week.  

Upon reflection,  I can see how it started.  I didn't do meal planning and grocery shopping on Saturday, thinking I could do it Sunday.  We stayed up until 3am Saturday night, and slept until afternoon.  By that time, I was feeling cranky and decided I could shop on Monday after work.  Well, that didn't happen either.   We wound up eating a lot of take-out crap all week.  When we eat take-out, I am out of my cleaning and laundry routines, because they rely on the framework of cooking and doing dishes, so the house is back to looking pretty trashed.  

So what I have learned is, the whole week's success really depends on having a plan and having the right food on hand.

Now, usually when I reach this point, I say "oh well, I guess it's just not going to happen" and give up on my new project, but not this time.  This time I am adopting FlyLady's motto, "progress,  not perfection".  I need to relax my all or nothing standards, and just pick up where I am and keep going.  So this weekend, I have done my planning and shopping and I am ready to go for next week!

On the positive side this week, I spent Wednesday evening crocheting up this adorable baby bonnet.

It's a gift for one of the doctors I work with who is going on maternity leave next week.  I found the pattern on Pinterest, here.

On Thursday night, I had a partial intestinal blockage, probably due to the underdone vegetables in the teriyaki bowl I had at lunch.  Despite taking 2 T3s, I couldn't sleep until the worst of the pains ended, about 10 am on Friday.  I missed a day of work to sleep and recover.  Now I have been on liquids and soft foods for 3 days and I am just starting to feel like myself again.

This time next week we will be on a plane travelling to Veradero, Cuba!  We are spending a week at an all-inclusive resort.  I can't wait!  I will have a whole blog post on our trip after we get back, as there is no wifi at our hotel.

Television Worth Watching

7 hours this week.  

How I Met Your Mother, Agents of S.H.I.E.L.D,  Modern Family, Supernatural and two movies.

A couple of times this week I felt the siren call of couch and remote, but I resisted until the weekend.  As long as I stay away from the tv, even if I have a totally non-productive week like this one, I still call it a victory.

My Crohn's Story - part 1

*TMI warning!  The following blog post may contain poop.  (Don't say you weren't warned.)

The name of the blog is Maiden, Mother, Crohn's, and no, that's not a spelling mistake.  Last year I was diagnosed with Crohn's disease.  Having Crohn's is not the focus of my life, nor is it going to be the focus of my posts here.  However, for the sake of anyone who may have found their way here thinking this was a blog about Crohn's/Inflammatory Bowel Disease, I think it's time to share my story.

First of all, I know that Crohn's can be a terribly debilitating disease.  My case has, so far, been on the mild end of the scale.  I feel somewhat unworthy to claim to be a part of the brave group of people who deal with things like unrelenting diarrhea,  severe abdominal pain, intestinal strictures/blockages, fistulas, multiple surgeries, fatigue, weight loss and many other painful and embarrassing symptoms. I know that what I have experienced pales in comparison with what most Crohn's patients go through.  Nevertheless,  my story is my story, and if sharing it can contribute to raising Crohn's awareness, then here goes...

About 2 years ago, on routine blood work, my family doctor noticed my hemoglobin levels had dropped.  Not to below normal, but low enough that she thought further investigation was in order.

I was referred to a gastroenterologist at Sunnybrook.  I underwent colonoscopy and gastroscopy, searching for a GI bleed to explain my low hemoglobin level.  I have to admit to being more than a little freaked out about this test.

The bowel prep starts the day before the procedure.  You have to drink litres and litres of a foul tasting mixture which turns everything in your GI tract into liquid. You keep drinking it until what is coming out looks about as clear as what went in.  I found the taste of the bowel prep solution so nauseating, that by the 3rd or 4th glass I could barely choke it down.  Even the memory is nauseating!

On the day of the test, I got a ride to the hospital from my Dad (thanks, Dad!).  You can't drive yourself for 24 hours after the procedure if you take the sedative, and I definitely wanted the sedative.  I had an IV put in, and I got the sedative, and the rest of the procedure is a bit of a blur.  It didn't put me out entirely, because I remember being asked to turn on my side and on my back.  I also remember thinking how cool it was to be able to see the inside of my colon up there on the screen.  The procedure was uncomfortable, but not painful.  It took about a day to recover from the effects of the sedative.

Everything looked normal in my stomach and large intestine, so then we needed to look at the small intestine, with a CT enterography.  More nasty bowel cleanse.  (As an aside, I've been through this quite a few times now and, IMHO, it is the prep that is the worst part of any of the tests and/or procedures I've had so far.  I read that it helps to chill the liquid and drink it through a straw, so you don't have to taste it as much.  Not!)  The CT was quick and painless.  The results came back, saying I had about a foot of thickened intestine in the ileum "consistent with Crohn's disease".

Crohn's disease?  No.  That didn't make any sense.  Aren't people with Crohn's thin as a rail, with constant diarrhea and pain?  Not me.  There must have been some other explanation for the thickened intestine.

But, no, I talked with my doctor and found out that it was entirely possible for me, a 43 year old, 180 pound woman, to develop this disease.  Apparently, it is more common now to diagnose Crohn's in the early stages, and by treating fairly aggressively, it is possible to avoid or delay a lot of the nastier complications.  Well, I was certainly in favour of that!  But the treatments can carry some pretty frightening complications of their own, including cancer(!), and I didn't even have any really bad symptoms of Crohn's yet.  I felt trapped; there just didn't seem to be any good choice I could make.

Next week

I will be posting about my symptoms, the drug treatments I have been prescribed and how I finally came to an acceptance of my diagnosis.

In Other News

This has been the craziest week for weather!  We started off the week with super cold temperatures down to -40 to -50 with the wind chill.   The thermometer in my car was showing -27 on Tuesday morning.  Many parents kept their kids home from school and the buses were cancelled.  I made Sarah go, of course, and she wound up being one of only two students who showed up in her class.  What can I say?   I grew up in Winnipeg.

The cold weather was caused by an "Arctic Vortex", which brought cold air down from the north pole, looked around, consulted its GPS, made a u-turn and went home again.  By the weekend, the thermometer was back up well above freezing.  The warm air meeting the cold snow created a thick fog.

I was on call this week, which means I stayed late at work a few evenings.  No calls, though, so it was a good week.  The extra money for carrying the pager is a nice perk.

On Sunday night we filtered and bottled Bruce's latest batch of wine.

It has been fermenting and then aging on the kitchen counter for about 6 weeks now.  It still needs a few more weeks to age in the bottles before it will be really good, but that didn't stop us from sharing the first bottle that night!

We took our "old man" cat, Schrodinger, to the vet on Wednesday.   He is 15 years old and has lost a lot of weight over the last few years.   More recently, he has been having diarrhea and vomiting, no matter what brand of food we tried.  Almost $400 later, we found out he is hyperthyroid.  The good news is it can be treated by giving him an iodine free cat food.  Hopefully he will be feeling a lot better soon.

Also on Wednesday,  Bruce started his next course at York.  This semester he is taking e-marketing.  He says it should be relatively easy.  It's a little different though, instead of a final exam each student has to develop a marketing plan and pitch it to a real company.

Thursday night I went out to a Stampin' Up card class.  It's a lot of fun to get out with a bunch of the girls and do something crafty.  And the end product is so pretty!

Saturday we got an invitation to dinner at our friends Liana and Rob's house.  Liana and I are Paleo buddies.  We always inspire each other to great things in the kitchen.  She made a fantastic dinner of bacon-wrapped water chestnuts, chicken wings with two different sauces and french fries, all from scratch.  After dinner we played board games late into the night.  Good friends, good food, good conversation, what could be better on a Saturday night?

What's Cookin', Good Lookin'?

I used the rib bones from the Korean short ribs I made last week, plus some grass-fed beef soup bones I had in the freezer, and started a new batch of bone broth.  It's so easy to do and so nutritious.  Just cover the bones with cold water in the slow cooker, add a tablespoon of apple cider vinegar and some peppercorns and let it simmer away for 24 hours or so.  For chicken or turkey bones, I do 12 hours.

Once the broth is done, strain out the bones and peppercorns and put it in the fridge.  

The next day, all the fat will be solidified on the top and can be easily removed.  The broth itself will have turned into jelly.



 Don't worry!  This is a good thing, it shows that the vinegar has pulled the gelatin and minerals out of the bones.  When you reheat the broth it will liquify again.

Then I take the jiggly meat jello and put it into ice cube trays and freeze it to use later in sauces, soups, or just to drink straight when I am not feeling well.  The gelatin is so good for soothing an inflamed digestive system!  When my digestion is off, I stop eating solids, and this "liquid gold" becomes my go to drink.  Even when I don't feel sick, bone broth adds a depth of flavour to anything I add it to.  It's great for deglazing pans.  Just grab a cube or two and throw them into the pan after taking out the meat.  Voila, a yummy sauce.  Easy!

Next, I tried the "Magic Chicken Wings" recipe from "Food for Humans".   First I made the Magic Mushroom Powder, which combines dried mushrooms, kosher salt and a few other spices into a seasoning powder with one heck of an umami punch.  The powder can be used on any kind of meat.  For the Magic Wings, I dusted the wings in Magic Mushroom Powder, then put them in a large freezer bag for 24 hours.  The next night, it was a simple matter of baking them in the oven.

The wings were crazy good!  Even without any sauce.  I am definitely bringing these to the next potluck I go to.  I served them with blue cheese dressing for dipping, and Bruce enjoyed them with Frank's Hot Sauce.

Saturday morning (ok, afternoon), I tried a recipe for "Pumpkin Pancakes" from "Practical Paleo" by Diane Sanfilippo.  The pancakes are flourless, of course.  They are based on eggs and canned pumpkin puree.

Although they looked nice and fluffy in the picture in the cookbook, mine came out flat, wet and rubbery.  Not very pleasant! 

Maybe my baking soda is old, or maybe I could add some coconut flour next time.  If there is a next time.  I have a good recipe for almond flour pancakes in the "Wheat Belly Cookbook" that I  really like.  I will probably make those next time.

Television Worth Watching

Total TV time this week was just under 4 hours.

I watched the new episodes of Agents of S.H.I.E.L.D., Big Bang Theory, Community, Modern Family and Sherlock.

It's been almost a month since I curtailed my TV habit, and I am still not really missing it.  I'm also not enjoying the time I do spend in front of the TV as much as I used to.   Although the Sherlock episode was very good, the sitcoms aren't capturing my attention.  I guess the next big thing in television I am looking forward to is the return of Game of Thrones in April.

Have a great week!