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.

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.

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?

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!)