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.