The hope and despair cycle

This condition I'm battling, ulcerative colitis, takes a big toll physically.  However, I think the mental impact of the disease is just as serious.  Chronic pain of any kind wears you down.  Many people are lucky and find a medication or routine that works for them.  But others, like me, have a long road to remission.

I alternate between being hopeful about the improvement each day might bring, and dreading the pain or worsening of my condition that I might see each day.  If yesterday was a bad day and I expect today to be a bad day, it's not too difficult to deal with today.  However, if yesterday was a good day and I was hopeful about things improving, a bad day today fills me with despair!  It feels like every time I get my hopes up about my body healing, my hopes are crushed only a day or two later as I spiral downward into pain and bleeding again.  And it just keeps happening, getting harder to deal with each time.  I've been sick long enough!

Many, many people with chronic conditions take anti-depressants to help them deal with the despair.  I've been trying very hard to manage these feelings without any additional medication, because I've already taken enough medication for a lifetime.  I did take prozac for a while after my first baby was born and it definitely helped me stabilize my emotions, but I'd rather not take it if I can help it.

So how do I currently handle bad days?

• I take a lot of deep breaths.
• I take one step at a time, one foot in front of the other.  Kids must get dressed, breakfast must be eaten, diapers need changing.  I have no choice but to plug along, and that really helps!
• I try hard to look at the big picture, most of the time I can say "this morning sucked, but it was better than last week!" (or last year, or that time i was in the hospital, whatever it takes)
• I keep a food journal, sometimes just writing down "Uuuugh!" makes me feel better
• I plan on having stomach problems.  This may be seen as pessimistic, but it helps me avoid disappointment.  I'm selective about social outings and I plan errands for times when my stomach is typically calmer.  Sometimes I feel like a hermit, but most of the time I feel "prepared" to handle set-backs and therefore less stressed.
• I let myself cry if I need to (but that's not very often anymore... dare I say I'm getting used to this crap?)
• I tell someone who cares that I'm having a bad day, with details if I need to.  I don't want to burden anyone with concern for me, but I've come to realize that some people (like family) will worry anyway.  So if telling them the truth about how I'm feeling helps take the edge off, then it's ok to do.
• If it's really bad, I curl up for a nap or a little book time when I can manage a moment (when I should be working or during naptime).  I figure if I've already lost X amount of time because I was in the bathroom, what's 15 more minutes if it will help my head?
• I try to think about good and happy things.  I like to make lists (as you can tell by my tendency to make bullet lists) or look at pictures of my happy smiling kids!

Today is a hopeful day... let's hope tomorrow is too!  Maybe someday I'll get to eat another cookie!

Sad face

Crampy belly all day, and now bleeding again. WTF!?!? I'm trying so hard, why am I getting sicker????? Waaaaah!!!

Day 131

Well, something is working.  Sometimes.  But what?

I started feeling much better in early April, dealing with CONSTIPATION for the first time in years and years!  Obviously not ideal, but what a welcome change!

Then things got wobbly for a few weeks...

...and now they MAY be improving again, or not.  Who knows.  I am so ready to be done dealing with UC, but unfortunately quitting isn't really an option.

I managed to get to my office in the city yesterday and have a very productive day, but not without it's troubles.  I had to run to the bathroom on the train, eeek!  Luckily I had the foresight to choose a seat in a car with a bathroom, it was unoccupied, and not too gross.  The rest of the day I was super nervous, but didn't have any more trouble.

My food options are starting to feel a little bit more normal... here's what I ate yesterday (I brought lunch to the city):

• breakfast: homemade turkey sausage patties with honey and cinnamon "syrup"
• 2nd breakfast: Smoothie (homemade coconut milk, coconut oil, banana, blueberries, OJ)
• elevensies: Bacon (cold)
• lunch: Grilled chicken, leftover garlic zucchini, olives, olive oil & vinegar (cold)
• snack: Baked apple with blueberries, coconut oil & vanilla
• extra snack: homemade fruit snacks (blueberry juice and gelatin)
• dinner: "creamed" chicken and pumpkin soup with spices (pureed)
• dessert 1: pumpkin pie (coconut milk, pumpkin, vanilla, spices, gelatin)
• dessert 2: frozen peanut butter and coconut oil bites

I was hoping to restart tapering prednisone this week, but since I'm feeling a little wobbly I held off.  I should be taking this opportunity to add new vegetables into my diet (up next: cucumber or mushrooms?), but I gave into cravings for peanut butter and added that back instead.  I'm sticking to small quantities since I know it can be an irritant for many people.

My body has been going through a lot of stress the past few weeks (visitors, return of the live in MIL, allergies, hormones still crazy, sick kids, work deadlines) and I'm hoping that's what caused the wobbly-ness and things will settle down soon.

Perspective is everything - even my bad days are better than where I was a few months ago!  Currently bad days are characterized by slightly increased frequency and bad cramps.  Good days are a few cramps and a few bathroom trips, sometimes not urgent.

I'm still hopeful that this new medication Entyvio is working and that I will see a lot of improvement after my next infusion in early May.  In the meantime, maybe my intestines are having a chance to heal because of my (hopefully) healthy food choices...  And hopefully i'll be able to lower my steroid use some more, currently on 10 mg of prednisone and using cortifoam twice/day.

In other news, my size 2 pants are falling off.  Who's thighs are these?

Day 90!

I've survived 90 days on this diet!

Good things:

• I apparently have pretty awesome will power
• I lost a lot of weight (too fast), and have stabilized at a pretty good weight for my size, hooray!
• I'm a lot less bloated than I used to be
• I'm eating a lot less sugar and hardly any chemicals
• I have a little less anxiety over food, since the rules of the diet are pretty clear cut.  Before the diet i was very overwhelmed with all of the conflicting advice!  
• I like knowing that I might have taken a major step toward healing my body, even if I can't see it yet

Bad things:

• I'm still missing out on a lot nutritionally since I'm having so much trouble introducing new foods.  
• Life is complicated, so when I have bad days I never know if it was some random factor from life (stress, germs, hormones, sleep) or a new food.
• The diet is a lot of work, often overwhelming.  Sometimes I need a convenience food!  Bananas are the closest thing right now... but unfortunately it seems to be nearly impossible to buy a ripe banana, so if I haven't planned ahead properly (or if my family eats them) it's a problem.
• I'm still sick.  Quite sick.  I appear to be physically healthy, but I still can't leave the house.  My quality of life is currently pretty low in that regard.  Interrupted sleep and lots of bathroom anxiety.  
• So, so many of the recipes recommended for this diet include dairy and/or eggs... both of which I've ruled out for a while.  I don't even plan to try nuts or peanuts again for at least a few more weeks... BORING.  I need to hurry up and find some vegetables that I can introduce successfully!!  What vegetables don't cause gas or irritate?  So few!  Everything is either a nightshade, a legume, or related to broccoli.  And greens are out too... since spinach was a big fail.  I'm serious... what else is there?  I'm currently eating carrots, winter and summer squashes and asparagus.  Next up is... beets?  Is that all there is?  I might try tomatoes or peppers soon too, even though they're nightshades.  Dying to add in garlic and onion, but they're crazy gas producers...

Moving forward, I:

• Will stick to the rules for at least a little while longer, hoping to get a stretch of relatively little stress and germs, see if i can finally establish a baseline of "safe" foods
• Will consider adding in digestive enzymes to see if they help
• Will continue with Entyvio treatments
• Will continue with the idea of reintroducing foods to try to pinpoint intolerances
• Will avoid eggs at all costs (I think that's what sent me into my recent downward spiral... which is in alignment with past experience)
• Might relax the rules of the diet if I don't see major improvement kick in soon... things like jarred applesauce and canned tomatoes might become acceptable in my m ind... right now they're "illegal" because they MIGHT be made with sugar that isn't listed on the label.

Desperation Recipe of the day: Coconut oil glazed frozen banana coins

Ingredients:

• Frozen banana
• Liquid Coconut Oil (microwave for 30 seconds if solid)

Instructions:

1. Slice frozen banana into coins
2. Dip in coconut oil, place on a plate or parchment for a moment to so that coconut oil will harden around banana
3. Consume immediately (banana melts fast and turns liquidy and weird)

Disaster

Google just asked me if I wanted to buy a domain and link my blog automatically... so I searched for "Lizwantscookies.com" to see if it was available.  It is!  But I don't feel like buying it since I have no readers anyway.  However, I thought that some of the "related" suggestions were really funny... such as "lizwantspersonallyidentifiableinformation.com"

Anyway, I still don't know if the SCD diet is going to work for me.  Today is day 81, and my digestive system is a mess!  But I can't say it's the diets fault, I tried introducing some new foods and things went haywire.  They say that you're supposed to wait 3 days between every new food (or spice!), but sometimes that's just not practical.  I needed to get some new nutrition in fast because of how fast I was losing weight, so I only waited a day or two and now I don't know what triggered my latest problems.  There's also the possibility that these troubles aren't food related at all, but that I'm experiencing the common "3 month flare" that people sometimes see while following this diet.  No one knows for sure why some people experience a flare in their symptoms after 3 months, but the theory is that it has to do with the life cycle of bad bacteria in the gut.

So my latest issues could be from:

• Apples (I went a little crazy and had more applesauce than I should have...)
• Almonds (I went a little crazy and had more baked goods than I should have...)
• Eggs
• Peanut butter (one of my top 3 favorite foods... the others are dark chocolate and strawberries)
• Vanilla
• Baking Soda
• Calcium Supplements
• 3 months on the diet

Unfortunately, I think eggs are the culprit.  I've suspected egg ever since feeling cold-like symptoms within minutes after biting into a hard boiled egg one morning, and I've gone very long stretches without them.  I tried twice to add them back into my diet last spring, and both times were quickly followed by disaster.  I allowed that it could have been coincidence... but after recently adding eggs back in things quickly fell apart again.  3 times is tough to chalk up to coincidence!  So I will again be avoiding eggs for a lengthy period of time.  Too bad... they're so full of nutrition and great for baking, plus mayonnaise would have been a nice way to add some variety to the endless menu of meat.  It was really wonderful to be able to include pancakes, muffins, and cookies in my diet for a couple of days!

So, I cut all of these new things out of my diet again, and I'm going to tryyyyyy to follow the 3 day rule once my symptoms improve a little.  If they ever do...

I'm still waiting to see if the Entyvio infusions will help, I'm about 3 weeks into the treatment, and reportedly 50% of people with Ulcerative Colitis see a response by 6 weeks.

Fingers crossed that SOMETHING starts working soon!  I would really like to be able to write a post saying things are improving... and it'd be so great to take my kids to the park now that the weather is improving and not be completely freaked out about the park having no bathroom.  I've been dealing with debilitating symptoms for 15 months straight, and haven't ever fully been in remission since being diagnosed 3 years ago.  ENOUGH IS ENOUGH!