3rd and FINAL Surgery!

FINAL surgery!!! At least, if all goes well.  So... hopefully final surgery!  Fingers crossed!

I am so excited to move on with my life.

I have felt much better since my colon came out, but I've felt like I'm stuck in limbo.  I'm not sick, but I've always had future surgeries and recoveries looming over me... It made it hard to move on.  I feel like once I fully recover from this 3rd surgery, if all goes well, I can move on from "being sick".  I will never be normal, and sometimes I struggle with that, but hopefully I can be normal enough to stop thinking of myself as sick.

New normal.

Back to being stressed about my kids and my job and my miles long to-do list and regular normal-people things.  Leaving my house without being stressed.  Rolling on the floor with my kids without worrying about hurting my stoma.  Traveling.

AND I'M ALMOST THERE!!

I had my final surgery on December 1st.  The surgery itself went very well (after being tortuously delayed until 4PM!), and my intestines didn't shut down!  Hooray!  I came home after just a few days (terrified) but everything was working!  

My first couple of weeks home were hell though.  Some people adjust quickly to using the toilet again, and others don't.  I had so, so, so much pain.  And so much frequency.  It was almost as bad as some of my worst colitis memories - I cried and cried and wondered if I'd made a terrible mistake.  Gas bubbles caused pain worse than labor contractions, I couldn't breathe or move a muscle until they subsided.  I was running to the bathroom so often that I couldn't sleep.  I couldn't heal.  I remember begging my doctor to tell me how many days until the turning point, when it might get better... and he couldn't tell me anything other than the fact that I seemed to be having a harder time than most people.  Day number 10 was the worst, for the record.  

And then... we all had the stomach bug.  Vomiting + diarrhea + newly adjusting digestive tract = back in the hospital.  Three bags of fluid later I was feeling much better, but STILL dehydrated.  I came home and slept for 12 hours straight!  I have 2 small kids.  I haven't slept more than about 6 hours straight in the past 5 years - it was amazing.  And I think the stomach bug was actually a blessing in disguise - allowing my empty digestive system to rest... I started improving quickly right after that!

I started attempting short errands outside the house a day or two before Christmas, and for Christmas itself I took a few Imodium and survived an hour in the car to spend Christmas at my parent's house, feeling relatively normal!  Two or three weeks later and I was back to working and even ventured into the city for a short day in the office.

In early February I started occasionally lifting my 2.5 year old for brief moments here and there... helping him get onto a chair, lifting him when he tripped, etc.  By the end of February I can carry him around for a few minutes at a time!  I am almost myself again with very minor limitations!

• I'm still gluten free, and experimenting with dairy free (both by choice because it makes me feel better). I need to be careful of foods that could cause blockages, but the doctor says I can eat or drink anything I want to.
• I still get dehydrated terrifyingly quickly - I can go from feeling fine to weak and dizzy and extremely fatigued in the course of an hour if I haven't been watching my water intake.  It's still pretty dangerous for me to get a stomach bug of any kind, but hopefully over the next few years my intestines will learn to adapt a bit and rapid dehydration will be less severe.  But it wouldn't be surprising if I need to make a few trips to the ER for fluid replacement over the next couple of years... so I'm a little nervous about traveling internationally just yet.
• My hormones are a little wacky, whether from the fluctuations in my diet or from stress of surgeries, I'm not sure yet.  It is definitely impacting my digestive tract, so hopefully things will level out soon.  If not, I may go back to seeing a GI or specialist to help understand the connection there, since hormones always played a very obvious role in my colitis and the problem has not gone away (though it has certainly been improved).
• My stomach muscles haven't recovered 100% and might always be a little wonky, but I'm getting pretty close to normal mom levels of super-strength.

I had a follow up with my surgeon yesterday and you know what?  He doesn't want to see me for another year.   A YEAR.  That took a while to sink in.

I'M NOT SICK ANYMORE.  

I'm moving on, and loving it.

Surgery Round 2!!

I did it!  I went through with surgery step 2/3 - "J-Pouch Construction and Loop Ileostomy"!

I was terrified right up until the drugs kicked in.

My surgery was on a Tuesday morning at 8 AM.  I took a Xanax and some Zofran Monday evening, to help me deal with the tired/hungry/scared nausea and nerves leading up to the surgery.  Xanax is pretty great, I actually managed to sleep!!  We left the house at about 5 AM to make our 6 AM check-in at hospital registration.

Waiting was agonizing.

I left all of my belongings and cell phone and glasses with my husband, and they wheeled me away before we got to talk to the doctor... which was a little surprising, but Mount Sinai is such a busy place that I guess the doctors don't see patients until they're literally prepped and ready.  When I finally saw Dr. Steinhagen before surgery, I tried to remember all of my last minute questions (my list was on my cell phone, with my husband...) and found out the surprising news Dr. Patricia Silla would be assisting again and that they were going to try to do everything laproscopically!!!  AND THEY WERE SUCCESSFUL!!!  I think it's incredible that they were able to do this major surgery through 5 tiny incisions, my ileostomy site, and believe it or not, my butt.  They literally stuck a stapler up my butt.  It's been a little sore... but worth it to not have any big incisions to recover from!  When my mom had surgery 15 years ago (same surgeon) they opened her up breastbone to pubic bone.  I didn't get opened up.  That's amazing!!

For this surgery they make an incision around your stoma, since that's the end of your large intestine and they need to free it up to make the J-Pouch.  They pull out a length of small intestine so that they can create the J-Pouch, by folding it over on itself.  Meanwile, they remove the "rectal stump" (several feet of large intestine that was just hanging out in there, not being used), leaving about a 1-inch "cuff" of rectal tissue.  Then they slide it back in, and attach the bottom of the pouch (the fold) to the rectal cuff.  My understanding is that they used to remove all of the rectum since it is diseased with UC, but they found that the walls of the small intestine weren't strong enough and would collapse and have more issues.  The 1" may get colitis (and later on rectal cancer) but it's worth keeping it for now to reinforce the pouch/anal connection.  We'll just keep an eye on it, and if it gets sick it's easier to medicate 1" of sick rectum than it is to heal an entire colon.  Anyway, I think this is where the stapler comes into play... to help attach the pouch.  I don't think they do much sewing, mostly stapling.  Lastly, they pull a loop of your small intestine higher up out of the old ileostomy hole, cut it part way open, fold it back, and sew it in place - this is called a loop ileostomy, and serves to divert the poop out into the bag upstream, while the new J-pouch downstream has a chance to heal.
The doctors later told me that the surgery went great, and that it is generally much easier to do things laproscopically on thinner people.  They did, however, mention that I had a big ovarian cyst that got in the way and "a piece fell off" so they sent it to pathology.  WHAT???  (I haven't heard anything and it's been over a month, so I'm pretty sure that means it wasn't a problem.  Ovarian cysts are common).

I don't remember much about the first day of recovery, except ridiculous nausea, and constantly feeling like I needed to pee.  Thanks catheter.  They told me I had to leave the catheter in for at least 2 days post-op, because some people have some kind of bladder nerve trouble after this kind of deep pelvic surgery.  Walking with a catheter = not fun.  It was kind of funny when the person changing the sheets somehow spilled my box/bag of urine all over the floor though.  Whatever, pee on my feet.  At least it was my pee!

One of the more shocking things after this surgery was the drain.  I've never had a drain before...it's a little hose that disappears inside of you, and somehow transparent red fluid comes out and fills up this little ball you have to empty occasionally.

Since my incisions (other than my new loop-ileostomy) were all tiny, my abdominal muscles recovered pretty quickly, and I could sit up without help within a couple of days!  Unfortunately, although I looked better on the outside, I had another system-shut down on the inside.  Paralytic Ileus I think it's called?  Basically, I tried eating and my body was like, "wait, WHAT?  We have to process food after what just happened?  We're not ready!!!" and then my small intestine passed out for 48 hours, just like last time.  The good news is that the combination of me puking with new residents sucking at their job meant that I never got the NG tube the doctor ordered, HOORAY!  Avoided repeating the worst discomfort I've ever experienced in my life!

But then.  I was starting to feel better, moving around, walking and getting less nauseous... and I started having fleeting severe pain on my right side, kind of like where appendix pain would be (if I still had one - it comes out with your large intestine!).  It started off as a fleeting (but severe, 10 out of 10) pain, and over the next couple of days became less fleeting, more frequent, and harder to get rid of.  We suspected gas pain or some kind of tight spot in my intestines, but it started getting worse when I moved my right leg.  WTF.  It seemed to be worse overnight, and I spent a couple of evenings freaking out.  We thought perhaps it was related to a drug I had stopped taking, so they put me back on it and the pain backed off (good drug!). 

Unfortunately, the next morning I woke up feeling like I was passing gas out of my bottom... but it turns out I was bleeding.  A lot.  And I couldn't hold it in!  We think it was "old" blood, ie, the clotting and whatnot from surgery was shedding and passing out the rear.  My butt was so traumitized from the surgery that I couldn't control it, but after a day or two it backed off, and I no longer leak :) 

Because of the bleeding, they took me off the good (NSAID) drug again, and I had a horrible night, where I cried hysterically and basically did a pull up on my hospital bed all night long, trying to literally get away from the pain.  A 12 on a scale of 1-10.  The poor overnight on-call nurse practitioner!!!  They finally drugged me up enough that I fell asleep, and I woke up to my surgeon pulling out my drain.  As he pulled it out I felt the awful pain for a second, and then IT WAS GONE!  Apparently, the drain was poking or squishing or somehow generally irritating something, and once the drain was out, the pain never came back.  What a frustrating fluke! And what a relief!!!

When I eventually woke up out of my drug haze, I ate some food, it came out without too much trouble, and I got to go home!!

Surgery is Scary

Before my 2nd/3 surgeries toward J-Pouch, I was very scared.

My first surgery was scary because of the way it all happened, but I actually wasn't that scared because there was no choice in the matter, I was really sick, surgery was the only option, and it happened quickly.

This time around surgery is a choice... and with that comes doubts!  I've made my choice, but I'm still scared.  

• I'm scared that I'll suffer from pouchitis
• I'm scared of scar tissue and strictures and obstructions
• I'm scared of the pain of surgery itself and that I've forgotten how to deal with pain (with UC, pain was a daily occurrence and I think I built up a tolerance... what if I've become a wuss now that I'm healthier?
• I'm scared that my butt will hurt all the time
• I'm scared that I'll leak
• I'm scared that I'll still feel like I have colitis every time I menstruate
• I'm scared that sex will cause J-Pouch discomfort... possibly ruining intimacy for ever and ever.
• I'm scared that something will go wrong and my family will suffer me being sick again
• I'm scared about the fact that I'll never be "normal" again... even if everything is successful
• I'm scared that I'm being selfish for taking the time to go through with all of this when I have little kids at home

Which pouch...

So the time has come to decide... which pouch do I want?  An external poop pouch taped to my belly, or an internal "J-Pouch" made out of a portion of my remaining intestines?

Internal "J-Pouch" 

• Pros:  I look like a normal person.  I poop out my butt.  I potentially live a totally normal life from here on out.  No bag!!!!!!  I can fart! (Lying down).  If it doesn't work out, I could revert to an Ileostomy.  Stomach sleeping!  
• Cons: I have to learn how to use a toilet again, and it will buuuuuurn.  I have to worry about finding a bathroom again.  I will go to the bathroom often, but allegedly not urgently.  If I need to pass gas standing up, I will poop my pants.  Potential for "pouchitis", which is a lot like colitis.  Some people never have it, some people have lots of it.  It's usually treated pretty successfully with antibiotics.  Diarrhea will happen sometimes.  Maybe monthly (totally freaked out about how menstrual cramps will affect bowel function).  Obstructions and strictures could be an issue, particularly at my former ileostomy site because of scar tissue. Catheter not an option because of the J-pouch fragility.   Possible impact on sex-life due to irritation/inflamation/weird feelings in the region.  Will retain a tiny piece of my rectum (a 1" cuff) that could still become cancerous.  If the world ends and I get an obstruction, I'm in big trouble.

External, permanent Ileostomy

• Pros:  Never need a bathroom urgently, woohoo!  Freedom!!  Even if I get sick and have diarrhea, who cares?  No running to the toilet.  If I get an obstruction, potential to clear it myself by inserting a catheter (like, if the world ends or I'm on vacation... I've brought a catheter on a plane with me just in case, for real).
• Cons:  I have a bag of poop taped to my belly.  Sometimes it leaks or falls off (in my sleep!!).  It smells awful when I go to the bathroom, embarrassing in public.  Fills up with gas, limits my wardrobe.  Constant concerns that my kids will kick me by accident or pull on my appliance.  Can't sleep on my stomach for more than about 5 minutes at a time (right after emptying bag).  Seatbelts are uncomfortable.  Pants are uncomfortable.  Body image & self confidence is a little distorted.  Changing the bag sucks.  In general, it's kind of annoying.  If the world ends, I'll  be covered in poop all the time because there's no way i'll be able to get supplies.  But husband pointed out we'll all be covered in poop if the world ends, so there's that.

I think I could accept living with a permanent ileostomy without too much convincing, because in general I'm pretty secure, not too vain, and love the freedom from the bathroom.

But let's be honest... I'm a little bit vain.  And I'm still relatively young.  And I want to be "normal"... at least physically.  I'm pretty sure I would always regret not trying to be normal, and my surgeon assures me that I am a very good candidate for a successful J-Pouch.  So I'm doing it!  

My next surgery is June 28th... bright and early.  This will involve taking my small intestine, folding it over on itself to form the "J-Pouch".  They will remove all but 1 inch of my rectum (It's just kind of floating around in there at the moment) and tie the new J-Pouch to the rectal cuff.  They will then pull a loop of my small intestine (higher up) through the hole in my abdominal wall where my ileostomy currently is, and they will cut a slit in that loop, then sew it to my abdomen to create a temporary "loop" ileostomy.  The poop will come out of that slit, into a bag, while my new J-Pouch heals.  In several months, I will go in for a 3rd surgery where they stitch up the slit, push my intestine back in, sew up the hole in my abdominal wall, and re-route all of the poop through the nicely healed J-Pouch.

They say the recovery from this one is "similar to a c-section", ie, no lifting for 6-8 weeks.  But I've never had a c-section, and I don't have a newborn at home (just 2 oversized young children), so I'm not really sure how that will translate.

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??

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!)

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...