Reality Check... Again.

It's been a while, sorry (not sorry), I've been too busy living life now that I'm not sick :)

Unfortunately, I've been partying too hard with the cookies and crackers, and good ol' gluten-pain is back.  I went strictly gluten free on Sunday, and I'm already feeling 75% better!  I've also been having some mild UC symptoms (I do still have a rectum) and have been feeling like I need to go to the bathroom a few times a day, which is a little weird since I don't actually pass food through that part of my body at the moment.  Phantom pooping!  Is that a thing?  Like a phantom limb?

Life has been moving along quickly - work is busy, kids are growing up too fast, Holidays are in full swing, and we even took our first real trip in over 2 years!  We went to Florida to visit husband's father and brother, it was a very nice trip :)

Bahia Honda State Park

On Abuelo's boat

A floating bar!  I wanted to go, but the sun was setting.

It was so nice to travel and not be constantly worried about where the nearest bathroom was... although we did check out some really skeevy gas station rest rooms with our 3-year old.  At least the car seat stayed dry!  We were unsure what to do about traveling with kids and car-seats.  In the end we decided to rent car seats along with our car, and they worked out fine.  We made two different reservations just in case there was a shortage of carseats, but it turned out to be unnecessary.  We did bring our own stroller... though we ended up forgetting it in the keys and had to buy a new one for our trip home!  Turns out $25 umbrella strollers aren't so bad... though they don't compare to napping comfort of our city mini.

I did get to enjoy a trip to Mount Sinai though in early December... though this time I got to be on the outside looking in - my poor mom had a severe intestinal obstruction at the site of her old temporary ileostomy (what I have).  This was her 3rd time in 15 years, but this was by far the scariest - they very nearly performed emergency surgery.  Luckily (?) mom was able to overcome the obstruction without surgery, but she did have to endure the really awful nose tube of hell for about 24 hours.  The doctors wanted to leave it in longer "just in case," but having been on mom's shoes 6 months ago, I made it very clear that that was not an option (I also asked each and every one of those doctors and nurses if they'd ever had one up their own nose... none of them had)!

I am very nervous about my follow up surgeries next summer.  Even if I decide not to be reconnected, I still need to undergo at least one more surgery to remove my rectum (a proctectomy).  Along with that I either get a J-Pouch and reconnected, or I make my ileostomy permanent.  Either way, the surgery is comparable to a c-section incision, with a lot of repair work on the inside, and can be pretty miserable to recover from and requires attentive nurses... which Mt. Sinai doesn't have the best reputation for.  I've had good experiences on their 9th floor GI ward, but the surgery floors 7 and 10 seem to be pretty lacking. My mom had 2 surgeries at Mt. Sinai, one recovery was AWFUL and scary, and the 2nd was great (because of the stink they made about the first one...).  What will mine be??  The doctors are wonderful... but will I be able to endure the recovery??

Sew much fun!

Halloween was approaching, and my almost-3-year-old was consistently saying that she wanted to be Ariel (The Little Mermaid) this year.

Work had been (and still is) crazy, but I'm not sick anymore and Pinterest gave me confidence to tackle my sewing machine with this cute and easy mermaid skirt.  Success!! (Mostly)

I'd never made a ruffle before, but I liked the idea of making a skirt that my daughter could wear beyond Halloween.  I bought a ruffler foot off of Amazon to play with (what a headache that turned out to be), and eventually learned how to make a ruffle by hand (pretty easy!).  Once you get the hang of things, it really is a 30-minute skirt.  I even made a 2nd!

Unfortunately, she decided that the best way to wear this skirt was to hike it up around her waist and show the world that she is potty trained.  So... I added a panel of fabric in front (between her legs and the skirt) and also attempted to make a pair of "finned" leggings that she could have as a backup/supplement to the skirt.  I was really proud of myself for sewing my first skirt AND pants, but the pants turned out to be more like something you might pair with a flower costume and didn't get used.

Ariel has friends, so we decided to make it a family costume, hooray fun!  My  little boy became Sebastian: red sweatsuit, open claw mittens (so he could still use his hands) and a crab hat.

I was Flounder: Yellow shirt with blue felt spikes sewn down the back and stripes hot-glued on, with a felt & hotglue headband.  My husband was Prince Eric: white shirt, blue jeans, work boots & red fabric tied around waist... and a short wig because, like Disney princesses, Disney princes always have full, flowing manes of hair.  My mother-in-law also participated, dressing as another mermaid with a 2nd skirt that I pulled together.

 Of course, by the time Halloween came around (a week after her costume party birthday), she was over Ariel.  Here's some of what she cycled through on Halloween:

She's Baaa-aaaack!!

The Old Liz is definitely back!

I just struck a deal with myself:

Me:  If you throw out the 2 (almost empty) tubs of frosting in the freezer that you bought last week, you can finish eating the tub of ready-made cookie dough you bought on Monday.

Me: Deal.

Then I executed said deal flawlessly.

This is why yoga pants exist... stretchy so they are comfortable when you eat tubs of cookie dough and frosting, and tight enough to guilt you into doing a few squats or sit-ups when you look in the mirror.  They're the perfect guilt cycle pants.

Grateful Monday?

I cried harder than I have in a long time this morning.  You  know, that little kid tantrum kind of cry, where they pass out?  I need a nap.  My lungs feel so big now that I can breathe again! (Not really anything serious other than the fact that I was very, very offended, frustrated, and hurt - I'm trying to move past it)

My friend makes a habit of listing things she is grateful for every Monday.

I am very grateful for a lot of things this afternoon, such as my recently regained freedom to eat tubs of frosting.  Thank you CVS, that was delicious.

Reality Check

Sooo... I still can't eat whatever I want :(

4 (!!) years ago, I stopped eating gluten to see if a weird abdominal pain I was experiencing would go away... and it did.  Every time I tried eating bread or pasta again, it came back.  I was hopeful that without a large intestine, I could go back to eating normal people food without pain... but the pain has returned.  If I eat gluten occasionally I think I can handle it, but if I eat it several days in a row, I become super uncomfortable.  Last night was AWFUL!  It kept me awake!

So what does my "gluten pain" (as I refer to it) feel like?  Oddly, a bladder infection.  It's a weird bloated/achy/pressure feeling in the vicinity of my bladder, which I've read might actually be my rectum.  When I first started noticing the pain back in 2009, I thought it was my bladder at first, but I noticed that when I peed I didn't feel better... but after a bowel movement the pain went a way.  Sorry if that's too much information, but that's how it is around here.  Now that I temporarily don't poop... I didn't know what to do for pain relief last night!  I still don't know... but luckily it's backed off, now it's just a dull ache.  Last night it hurt to sit or move at all!  I guess that's what I get for enjoying a weekend full of hot dogs, cookies, pasta, cake, fried fish, and beer.  That's enough to make anybody's stomach hurt, right? haha

So... back to gluten free... 95% of the time?

Oops

I really thought that I'd be good about blogging now that I'm getting my life back - but I'm too busy!!  I had hoped that I'd be able to step back into life slowly and keep in control... but old habits are heard to break and I've got right back to eating too many cookies and trying to do too much.  I'm a normal person again, hooray!!!!

What have I been up to, now that I have freedom in a bag?

• NOT TAKING STEROIDS!!!
• The beach!
• Socializing!
• Working - even traveling into my office weekly, I feel so grown up!
• Eating!

Normal person, chilling with her kids in a cardboard house

Look, here I am multi-tasking: Visiting family at the beach in Rhode Island with my kids while eating and speaking Spanish

Fun summer!

I still have so much to catch up on with my never ending to-do list, but at least I feel like the limits have been lifted, and I can do whatever I want to this weekend, as long as I can fit it in!  So far the plans for this weekend include a wedding, a friends/holiday reunion in New Jersey, a pool visit, and possibly a NYC excursion with visiting family... or another bbq.  Plus some new shelving, mowing the lawn, and general homeowner/mom tasks.  So much to do!  And I'm not sick, so I can do it! Yaaay!

Happenings in ostomy life:

• Air filters are tricky, and don't last long.
• I'm allergic to some of the adhesives.
• Fancier does not mean better - Old school can be a lot easier to maintain.
• Dehydration is a SERIOUS danger - I almost went to the hospital!!
• Ordering supplies is super stressful.  Nobody sells ostomy supplies in-store anymore, and if they do, insurance doesn't cover it.  Phone/internet based ordering is confusing and overwhelming for us newbies; I cried when I hung up the phone and I have no idea if I ordered the right things - nor do I know what anything costs!  They don't tell you what the parts cost, only the final price after insurance, so it's really tricky to figure out how many of the "fancy" and "cheap" setups to order!  I have yet to see the bill...  and to find out what I actually ordered, ha.

I'm Inflating!

I've gained 15 pounds, woohoo!  I'm feeling great most of the time, and although I'm still not strong enough to hold the kids for too long or too often, I'm feeling ALMOST NORMAL!!  I haven't been able to say that in several years!!!

Unfortunately, feeling "normal" also seems to mean "can't stop eating cookies" and "starting to feel fat", ha.  I still fit into size 0 pants (amazingly) but I've lost tolerance for the flab left behind when my muscles went away.  Time to exercise!!!!  But I'm still so tired...oh wait, that's because I have 2 kids.  No more excuses!

I tried running a little bit the other day, but I can't handle the jiggle.  Seriously, it's out of control.  One of the many days I was in the hospital I watched "Botched," a show about plastic surgery gone wrong.  One girl had butt implants that turned out to be giant boob implants in her butt.  Jiggle jiggle jiggle!  That's how it feels when I try to run or jump.  Or do a 1990's TaeBo VHS (which, by the way, is really hard!) in the kids playroom.

Speaking of plastic surgery, I recently started considering it for the first time.  **ASHAMED**
I've always been one to support all things natural; I'm a big fan of natural.  I hardly ever wear makeup and I've always been one of those girls who swears they'll never dye their hair when it goes gray.  Well... maybe I've been a jerk, and I apologize to all those people out there that I've secretly judged.  I still think we should all strive to be proud of who we are, embracing our wrinkles and scars as battle wounds or reminders of all the laughing and fun days in the sun... but maybe I'm starting to understand that some people feel that "who they are" might look a little different than what the mirror shows.  For instance... in my head, I have a great chest.  In reality... I used to.  And because of the steroids and weight changes I think I got hit harder than most women, which is something I was mentally unprepared for.  I still don't think I'll have surgery, but the fact that I've started considering it freaks me out.

But I think I have to abandon my "I'm all natural" pride... because I'm not.  I no longer have a large intestine... that's not natural.  What about the follow up surgeries to reverse my ileostomy?  Aren't they kind of like plastic surgery - and maybe slightly narcissistic in nature?  Where's the line between wanting to be normal (not poop into a bag) for medical reasons versus because I want to be just like everybody else and not have to disguise the bag of poop and protruding stoma on my belly?  And perhaps wanting convenience and to be like everybody else is like wanting to have a decent chest again?  Maybe I deserve to have good boobs after all that I've been through...  but then again, I think I'll have had my fill of surgeries.  Push up bra to the rescue!

I'm Eating!

The most common question I get these days is "what are you eating??"

ALL THE FOOD!

I'm eating almost normally!  I'm kind of binge-ing on junk (can of frosting and a spoon anyone?) because a.) I can, b.) I needed to gain weight and c.) I can... but I'm trying to reign it so that I don't get diabetes now that I'm "healthy", hah.  Also, I don't want to go back to being pudgy just yet.

The first week or two I was eating really soft (pudding, yogurt) or highly processed foods (saltines, instant potatoes) because I was so terrified of getting a blockage.  I was really crampy though, so I took out gluten again just in case that was contributing to the general inflammation.

Now that I'm feeling a lot better and gaining confidence in my ability to process food and not get an obstruction (knock on wood), I've been a lot braver and I'm now eating almost everything in moderation, but still sticking to gluten free for another week or two before I test it... and I'm still eating waaaaaay too many cookies and candies and chocolates and sugary foods in general.  Chocolate, how I missed thee!  I've been consistently trying to eat fewer cookies each day, this week and failing miserably - that habit sure came back easily!

I've already regained 10+ pounds! I'm up to 120, hooray!  Now to start gaining some muscle... I tried jogging for a minute the other day while out walking with one of the kids in the stroller, and oh my god the jiggle butt/thigh is a very strange feeling.  I need to fix that ASAP!  On the other hand I think I must look decent despite the jiggle, I got several hello's and head nods and even a honk from an orange sports car.  If you need an ego boost put on some leggings and walk through my neighborhood, haha.

Bag O' Poop

I can't get away from it.

There's a bag of poop attached to me... always.

I'm not grossed out or embarrassed by the ileostomy itself... but there's the poop!

I feel so dirty!!!

No, I don't smell bad.  Thankfully, science has come a long way and that's not an issue.

But it's there... following me around... I don't know if I can get used to this!

In the hospital they start you out with a clear ostomy bag, so that they can see everything, assess swelling and production and tell if everything is in working order easily.  It was also helpful to have a clear bag so that I could learn what was going on, and how to deal with it.

I recently switched to an opaque bag, and it has helped me a lot - at least now I can't SEE the poop all the time... It's still there, but out of sight out of mind to some degree, right?

Weighty Implications

I never imagined I'd be too skinny.  I currently look like I'm anorexic.
Ooooooh Ulcerative Colitis.  You've made me afraid to eat!!

I spent my whole life as the "pudgy" girl, just a little bit overweight (most of the time), because I love cookies too much.

This past year though... has had some extreme highs and lows!

Surprise Surgery! Part 4

So... I guess I wasn't ready for pancakes.

I was getting ready to head home on Thursday, but the weekend's disaster had taught me to be cautious.  The Dr's were all set to discharge me, but Thursday morning came around and I said... I'm feeling pretty bloated and uncomfortable, I think we should wait a bit and see what happens.  Turns out my instincts were right!  Thursday came and went, and nothing came out of my ostomy... so my stomach got bigger and bigger and more and more painful.

Surprise Surgery! Part 3

Recovery from my total colectomy and adjusting to using an ostomy has been a challenge both physically and mentally, but I think I've made tremendous progress in the past week.

Once you start to come out of the pain killer and anesthesia fog, they keep you on a diet of clear liquids for a bit, the length of which depends on how your stoma performs, ie, whether or not anything comes out.  I was allowed to try some cracker type foods on Thursday morning, after a Tuesday morning surgery.  I was terrified about how to start, especially after being sugar free, starch free, gluten free and egg free for so long!  So I started with rice cakes and a couple of salty potato chips, ha.  I felt extremely sore and bloated, but the doctors all seemed happy, and I wasn't using too much pain medication.  Later in the day I tried some mashed potatoes and turkey, and they were getting ready to send me home Friday! I was terrified!!  I didn't know how to take care of my ostomy yet, and I started to feel like they were pushing me out the door without adequate training!  Infortunately there are only 2 nurses at this hospital that specialize in training people to care for their new ostomies, but one was on vacation and the other was seriously overbooked.  I was also supposed to have help from a social worker setting up a visiting nurse service to continue my training at home, but everything seemed to be getting lost in the shuffle and I just kept hearing "discharge!" over and over!  I was still struggling with the abdominal soreness and bloating, but was also having regular difficulty with nausea, which I suspected was from the strong antibiotics they were still giving me for c.diff protection. the IV anti-nausea meds worked well, so I agreed to go home as long as they gave me a script for anti-nausea pills.

Surprise Surgery! Part 2

After an exciting day in the emergency room at Stamford Hospital, I arrived at Mount Sinai Hospital in NYC at around 11 pm by ambulance transfer (fun! but no sirens), waving to my husband through the back window as he followed behind for much of the trip.  Up in my room, various resident doctors came by and everyone agreed that I wouldn't be having any emergency surgery that night, so we tried to get some rest.  The nurses managed to find a recliner for my husband... but he was unable to figure out how to recline it in our shared stupor, so he slept sitting up with his feet sticking out in front of him all night.  Poor guy!  (I figured out how to recline it via secret hidden lever the next day!)

In the morning I was visited by many doctors, and we discussed my options.  The fact that I had a c.diff infection had the potential to change things... it was possible that this latest downturn was all due to that.  AND, having a recurrent c.diff infection is the only thing that currently makes poop transplants (fecal microbiota transplant, or FMT) legal in this country, something I was very interested in trying if my colon could handle it.  It was arranged that the FMT specialist would come see me the next morning (Monday).  In the mean time I had some abdominal x-rays to make sure I hadn't ruptured, but things still looked pretty awful and the general consensus was that surgery was going to be necessary - the damage was too great to get under control with medicines that had failed me so far, and the risk of my colon literally breaking open was pretty high.  So, I spent a day very hungry, waiting for my chance to see a few more doctors on Monday, preparing myself mentally for what would very likely be surgery on Tuesday or Wednesday.

Surprise Surgery! Part 1

Well, what an adventure I am on!

I was feeling pretty great back in April, but throughout May and into early June things started going downhill again.  I continued with the latest infusion therapy medication (Entyvio) and reached almost 6 months on the SCD, but just wasn't seeing the hoped for results.  I emailed my doctor some creative and uber dorky graphs, saying "I think its time to talk".

I am such a dork.

The next day, I felt surprisingly well, and even took the kids to the beach!  Turns out that was a bit of a last hurrah, and boy am I thankful that I was given such a nice afternoon with my kids! (and one last chance to bear my nice flat scar free tummy in an itty bitty yellow polka dot bikini!)

Crafty Weekend!

We're finally starting to feel like we have our act together again!  Hooray!  Not only did we manage to have a successful family outing to the grocery store AND home depot with minimal crying, but we made headway on several projects and even some yard maintenance.  Who knew we had it in us? haha.

Our house is a constant organizational challenge - organization is not my strong suit.  I'm one of those people with piles of stuff everywhere.  I know where things are in the piles (as long as no one else moves them), but I just can't seem to get rid of them.  I keep trying though!  Add 2 kids, a husband, and a mother-in-law to the mix and we have stuff EVERYWHERE.

Lately I've been trying to tackle the toys.  They're all over the place!  I tried getting rid of a few... but I barely made a dent.  I've tried rearranging to see if they take up less usable space if I put this giant thing over there and this pile here... but it hasn't helped much.  One of the biggest obsticles is a giant cardboard box that has been one of my little girls favorite toys for over a year now.  When I saw this idea for a collapsible cardboard playhouse on Pinterest, I had to try it!  My triceps are a little sore from pulling and ripping off all that duct tape, but success!  I made a few alterations since my box was bigger than the one in the tutorial, and our playhouse has front doors :)

I also managed to make serious headway on this clever idea for making a bean bag type chair stuffed with stuffed animals, and was able to finish it up during naptime yesterday.  There is a detailed tutorial by GoogieMomma for the S.A.C. (Stuffed Animal Chair), and Sherri at Little Thread Riding Hood made up some printable patterns and added some extra tips.  I made the larger size from the printable pattern, though I didn't use batting so I made the lining a little shorter and added some stuffing like GoogieMomma had recommended.   I think it turned out pretty well, but when my mother-in-law saw it she laughed and said (in Spanish), "It looks like a giant pumpkin!"  Little girl liked it though, and a serious jumping/play session took place on it yesterday evening.

Here it is - the giant pumpkin

Ignore the disaster that is our playroom

My first semi-applique!

Surprise!  A zipper in the bottom lets you add or remove stuffed toys, as demonstrated by Peppa Pig. 

I was very proud of myself for completing this project for several reasons:

1. I finished!
2. I found a mistake in the instructions BEFORE I did it, so no mistake for me ☺ (when sewing on the inner lining shell, both the outer and inner shells should be inside out, so that when you turn it all right-side-out the wrong sides touch - the diagram shows the outer-shell-right side out but the inner shell in-side-out)
3. I figured out how to finish it with NO HAND SEWING, HOORAY!
4. I learned a few things, like an easier way to do a zipper than I'd been doing.
5. I did my first (sort of) applique (a little pentagon on top to make it look nicer).
6. I only jammed my machine once.
7. I used up a whole bunch of fabric that I'd bought for curtains but the husband didn't like.  Waste not!
8. I finally sewed in my new crafting space in the back entry foyer - which means I cleaned off enough of the random clutter we accumulate to actually use the table! 

Now the stuffed animals are corralled and there's a new place to lounge on the floor for my/with my children :)  Now if only I could get rid of some of the other clutter... Which is why I made my very first Craigslist posting yesterday!  Another reason I feel accomplished!

Up next: open shelves in the mudroom/craft room/entry way, and possibly a new bench?

peanut butter treats

One of the weirdest things about becoming accidentally skinny is that I have to add fat to my diet.  As in, I have to try hard to make sure I eat enough fat.  As in, a LOT of fat.

There are a lot of differing opinions out there about which fats are healthy.  We all do what works for us, and I currently use a lot of coconut oil, olive oil, ghee (basically clarified butter), and bacon fat (for flavor!).  I also try not to skim fat out of meat dishes... but sometimes I'm still to grossed out after being raised in 90's America, during the height of the fat-free fad.

But there are some things that everyone appreciates some delicious fats in - even fat-free dieters.
 
DESSERTS!

Things like chocolates... and peanut butter cups...

I may not be allowed to eat chocolate, but I've (carefully) hopped back on the peanut butter train!

I've adapted the coconut oil "frosting" idea into bite size frozen treats, yum!  Great as a high fat snack, or as a satisfying dessert - just a tiny taste can be quite satisfying!

Frozen bite-sized peanut butter treats
quantities are estimates...

• 1/2 cup room temperature coconut oil (not liquid!)
• 1 tbsp peanut butter
• 1/4 tsp salt
• 1/2 tsp vanilla
• 1/8 tsp cinnamon (optional)

1. mix all ingredients well
2. place in silicone molds or place blobs on a small plate or tray lined with foil or parchment
3. put in freezer for 30 minutes
4. pop out of molds or off of tray and put in a ziploc or tupperware.  Store in freezer.

I like to chew them one at a time - they remind me of the insides of a peanut butter cup.  But sometimes I let them melt in my mouth instead :)

Anise vs. Fennel

I added a new spice to my diet yesterday - hooray!

Technically I added 2 by accident.  So much for one at a time, but so far so good, and delicious!

The result?  Delicious meatballs!

Did you know that anise and fennel are NOT the same thing?  Anise seeds are small, and fennel seeds are bigger.  We do not eat the anise plant, we do eat the bulb of the fennel plant.  The flavors are similar, but not quite the same - I always thought I was imagining a difference until I read about it yesterday!  Anise is a little sweeter with an up front kick, while fennel seeds are a softer fuller flavor that isn't quite as in-yo-face.

I love italian sausage, and I've been dreaming about the day that my diet can accommodate a homemade sausage flavored dish.  For my first try, I set out to make up some meatballs.  I was originally aiming for an italian sausage flavor, but the result was quite different since I forgot to add a few crucial italian flavors.  But what a nice meatball I created!

I started by toasting up some anise seeds, and as I was looking at them I thought, boy, these don't smell like sausage to me.  And they look so tiny... so I looked through my spice drawer and found the jar labeled "fennel seeds", and low and behold they were bigger and looked more like the things I see in italian sausage.  So I added some of those to the pan too.  This recipe would absolutely be fine with just one of them, though I do think including so much anise seed made them a little bit sweeter than they would have been with just fennel seed.

Chicken, Garlic & Fennel Meatballs

• around a tsp of anise or fennel seeds or both
• 2 cloves of garlic
• salt and pepper (sorry, i didn't measure)
• 1/2 of a small zucchini, seeded
• around 1/2 cup of pureed butternut squash (or you could just use more zucchini)
• 1 pound of ground chicken
• around 1/4 cup of coconut or olive oil (I think I used olive)

1. Put the seeds in a pan for a couple of minutes, browning them up slightly.
2. Line a baking pan with foil or silpat.
3. Pulse the toasted seeds in a food processor or bullet type mixer until you have a powder.
4. Add everything except the chicken and chop well.
5. Place the chicken in a bowl, mix in your pureed flavors.
6. With wet hands, form 1" meatballs.  You may need to re-wet your hands several times to keep the mixture from sticking to your hands.
7. Bake at 325 for about 35 minutes.  I checked by inserting a toothpick to gauge the resistence, and then cutting in half with a knife to make sure they were cooked through.  (My oven runs hot, so they may require a slightly longer baking time.  I wouldn't recommend a higher temperature or they might dry out.)

These did NOT taste like italian sausage.  The garlic and anise flavors were very strong, but delicious.  The vegetables helped keep them moist, and I couldn't taste the chicken.  The kids LOVED them!  We basically ate them straight up, but they'd be great as a snack with dipping sauce or over pasta (I served with tortellini for the kids, but they both devoured the meatballs on their own first).

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!

The Plague

Man down.

This was one intense virus!  I couldn't function for nearly 3 days!  I'm talking in bed asleep for more than 2 full days.  No reading, no TV, no Ipad... asleep.  I'm finally feeling like myself again, except for the fact that I can't hear out of one ear and I have an awful cough.  But I survived!!  Thank goodness for my wonderful husband, he took the week off to take care of me and our children once he had recovered!  Also, thank god for daycare.

So, being super sick on this crazy diet is not easy.  When you don't feel good, what do you want to eat?  Crackers and peanut butter, right?  Maybe a salty can of soup?  Not the options I had... which were homemade broth (I'm so sick of this I can't even look at it), a lot of meat (I'm nauseous and you want me to CHEW?), pumpkin, and zucchini.  Yuck.  So I added back in bananas and peanut butter.  As in, the only think I ate on Wednesday was a banana... and again on Wednesday.  Thursday I managed a small amount of soup, and friday I gave in an ate a spoonful of peanut butter.

All said and done... I lost another 7 pounds last week.  Crap.  I am now at an alltime low of 123 pounds... which would be great if it were on purpose, but it's not!  I'm trying NOT to lose weight at this point, and it's not working out so well...

Yesterday afternoon I went for my first infusion of Entyvio, the new treatment I'm trying.  About 50% of people who try this drug for ulcerative colitis see results at 6 weeks... so fingers crossed!  But my weight loss has been so drastic and fast, that when they tried to enter yesterday's weight into the computer a flag came up to make sure they didn't make a typo!  I've lost 15 pounds in the past month, and almost 50 (yes, FIFTY) pounds in the past couple of months.  I weighted 170 for a while after the baby was born, due to all the steroids I was on.  I'd estimate that since Christmas I've lost 25 pounds... that's a lot!  Too fast!  Not healthy!

So is this diet working for me?  The truth is, I don't think it is.  Today is day 60.  I'm afraid to give up after all the energy I've invested in it at this point, but I'm only feeling marginally better, and holy cow is it inconvenient!  It's nice that my clothing isn't too tight anymore, but this isn't sustainable.  I've been stuck in the intro diet for much, much longer than is recommended, but between the steroid taper and food reactions I just can't seem to get out of it!

So here's my plan:  Start adding foods a little quicker, hold off tapering prednisone for a few more weeks.  Add high calorie foods first - yesterday I added avocado.  I'm going to try waiting 2 days between foods rather than 3 or 4, to try to speed things along.  I'd love to know what's bothering me, but i think nutrition is more important at this point.  I've been eating a lot of peanut butter, and I'm going to try almond butter again in a day or two as well... then I think i'll move onto eggs.  If i can successfully introduce eggs and almonds, then I can start making some baked goods, which will really help me pack in some calories.  I'm supposed to be focusing on introducing vegetables, but I think calories are more important right now.

The truth is, if i lose another few pounds, I'm going to have to eat a potato.

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!

Frustrated

I feel like I'm not making any progress.  I had a hard week, and I was hoping for a speedier recovery. I need to remember that I've still come a long way, even with this weeks setback - maintaining perspective is important!  I need to be patient!

Good things:

• I've survived 30 days on this diet as of today!
• I've added bananas (uncertain whether I can handle them - too much sugar?)
• I've added yellow summer squash (hooray less boring soup!)
• I've added homemade 24-hour yogurt and butter (not homemade...)
• I've stopped pureeing all of my carrots and winter squash (yay for chewing!)
• Bacon is delicious
• I've tapered to 12.5 mg of prednisone per day (I  had been on doses of 20+mg for over a year, much of that at 40 mg, eek!)
• I look pretty good... most of my "thin" pants fit again, and my steroid "moon face" is melting!  Plus there's the fake tan from the orange foods, haha.
• For the past 3 nights, my son has only woken up once each night!  And daughter slept decently in her new toddler bed, woo-hoo for mommy getting a little sleep too!

Bad things:

• I didn't taper to 10 mg of prednisone today like I was hoping to, my belly is still too unstable
• My belly is unstable... things got really bad earlier in the week after tapering and some crazy stress (daughter had a very high fever for 5 days and son refused to sleep as well, so mommy was very tired and very worried, and with daughter home got no work done so work was stressful as well)
• My belly is waking me up during the night, so even though kids are giving me a chance to sleep, belly is interfering
• I tried an anti-spasmodic for the first time this week, and it didn't help much :(

Worries:

• The doctor wants to try Remicade one more time, in case the improvement I saw was due to Remicade finally kicking in and not the diet itself.  It makes me very angry that doctors discount the diet when there is so, so much anecdotal evidence out there that it at least helps... not necessarily a cure, but helps... but I suppose Remicade could be a piece of the puzzle, so I'll give it one more shot later this week.  In the meantime, fingers crossed my body straightens itself back out to the improved state I was experiencing a few weeks ago!
• Remicade is scary, always.
• My appointment for Remicade is in NYC at 9 am... how on earth am I going to get out of my house in time?  There's no way my belly is going to allow that!
• That one of the foods I added could be causing some delayed irritation... like dairy.  But my life (well, at least my mental state) got so much better when yogurt became an option... and I've given up dairy for months several times in the past (breastfeeding) and didn't notice any improvement.  So I'm sticking with it for now!
• That I won't have my life under control when my live-in mother-in-law goes on an extended vacation starting in mid-February (she's a real mixed blessing... stressful by the nature of our situation, but very helpful)

What now?
I'm not going to make any changes to my diet this week, other than backing off on fats and sugars.  Not eliminating them, but backing off.  I will go for the Remicade infusion on Thursday, and if I stabilize this week I will try to taper to 10 mg of Prednisone next weekend.  Hopefully I'll get to add a nice food of some kind later next week after the prednisone taper... if things are going really well I might spring for eggs or garlic!  If not... maybe just some sage (spice) or zucchini (since yellow squash seems to be ok so far).

I'm the Anti-Popeye

Looks like I won't be sprouting giant muscles anytime I pop open and chug a can of Spinach... I've had a bad 36 hours after trying to introduce spinach into my diet.  Bummer!  I was so looking forward to eating a non-orange vegetable!  I won't miss that weird gritty tooth feeling I get after eating spinach (I also get it from donuts... strange?), but I really appreciated the flavor contrast it provided to my current menu options.

So, after a day of stomach pain and a night of no sleep (and 2 sick and whiny children, one of whom spent the night in my bed thrashing and head-butting me), I'm feeling pretty dejected this morning.

I was very excited to introduce homemade yogurt today, but I think I'd better wait a day for my insides to recover.

So sad.

Foods tried and failed so far

• Pears
• Spinach
• Grape Juice (suspected it was causing too much gas, so removed from diet)
• Multi-Vitamin (was feeling a little wonky, so removed from diet again after reintroducing)

Foods I'm considering "successfully" re-introduced

• Acorn Squash
• Butternut Squash
• Ginger
• Lemon (I think, I've just been squeezing some juice to my water)
• Thyme
• Honey
• Coconut Oil

Notice... only 2 of those in the 2nd list are actual foods.  UGH.

I think I can... I think I can... I think I can...

A birthday with no cake!

My birthday was this weekend... and there was no cake in sight!  Very sad, but at the same time I'm very proud of myself for persevering with this diet.  Maybe I should have made a ground beef cake... eeeew.  I did break down and let myself have some honey, so at least I got to have a taste of something sweet.  I tried adapting this recipe for coconut oil "frosting" with semi-success (see recipe below).

Today is day 16 of this new eating plan... and unfortunately I don't think it has gotten any easier.  I've stopped crying, but I am BORED and FRUSTRATED!!  My belly hasn't really improved much in the past week or so, but I'm still better than I was a few weeks ago.  I almost never feel bloated, and the air bubbles that bring on cramps and the other issues that no one wants to read about seem to be limiting themselves to later evening and early morning most days.  Hooray for being able to leave the house during the day!

I'm getting really sick of eating the same foods over and over... even though I'm changing up my meat selection frequently, it's still meat.  I'm hungry often lately, but I think it's the kind of hunger that stems from being bored and tired (I have 2 small children, I'm always tired).  I've tried to up my fat intake a bit (more coconut oil, skimming homemade stock a little less), and even attempted a pseudo chicken "gravy"  (see recipe below) that has helped a little.  My weight has stabilized at 140; I lost about 10 pounds in the first 10 days on this new eating plan, yikes!  Great for my pants, but that can't be healthy!  Also, I've turned orange.

I'm orange! Too many carrots!

In an effort to fight the boredom, I've broken the rules about waiting 3 days between introducing new items on several occasions, especially since I've been trying to clear a window around times when I taper my Prednisone dosage.  Now, in addition to all kinds of meat/fish, homemade broth, and pureed carrots I am eating:

• meat (red meat, pork, poultry)
• fish
• well cooked carrots
• acorn squash
• butternut squash
• coconut oil
• thyme (fresh and ground)
• cinnamon
• ginger
• lemon
• honey
• "juice" from homemade sauerkraut (for some probiotics)

I added back in my vitamin, but I took it out again after being indecisive.  I also tried pears (it was so exciting!) but they made me super bloated and uncomfortable, and it took several days for things to calm down again, booooo.  

Next up is spinach, followed by homemade yogurt.  Then I'm thinking zucchini and garlic... I got a spiralizer for my birthday and want to use it to make some delicious pasta!  And maybe eggs are on the horizon (holding off on these until I'm a little less symptomatic)... when I can have eggs and yogurt and honey, there's a recipe for cheesecake!  And then there's butter... and bananas... banana "ice cream" anyone?

Coconut Oil "Frosting"

1. Using a metal spoon, scrape (you don't want chunks, but it won't work if it's melted liquid either) about a tablespoon of coconut oil from the jar
2. Add a little bit of honey and stir vigorously
3. Enhance with cinnamon, salt, ginger, or anything else available... but beware it may affect texture.  I tried adding a little bit of squash with mixed results (it's no substitute for peanut butter)
4. Enjoy tiny tastes with tiny spoon... it will last longer that way.  I use one of my baby's spoons!

SCD Intro diet appropriate "gravy"

1. Cook a chicken in your crockpot, seasoned with salt, pepper, and fresh thyme (6 to 8 hrs on low)
2. Ladle out most of the liquid and transfer to a small saucepan
3. Simmer until volume is reduced by half (intensifying flavor)
4. Use as watery gravy... it's been helpful for moisturizing chicken and adds some flavor... in later stages I've read it's good to use pureed onions as a thickener, but for now there aren't really any thickening options.  Maybe I'll try a tiny bit of squash... but then my gravy will taste like squash.