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??