Saturday, January 9, 2016

New normals and trusting the odds

Happy New Year!  I am elated to report that I've been doing great since my takedown procedure about six weeks ago.  The transition was easier than I expected and my life right now feels pretty much like my pre-UC "normal" (the only difference being I have a few scars on my abdomen and I have a small BM almost every time I go to the bathroom to pee -- MINOR issues compared to what I was going through before surgery!!!).  

To recap, the takedown procedure is a ~1 hour long surgery which reversed my ileostomy or reattached my small intestine so food would now pass into my internal j-pouch and out of my butt as opposed to being diverted through my temporary ileostomy.  Although this surgery was shorter and less invasive, I woke up with a lot of localized pain at my former stoma site.  My recovery nurse was quick to give me some dilaudid to take care of the pain.  
When I felt ready, I lifted my hospital gown to look at my former stoma site.  This is what I saw:
One day post-op

I knew I would wake up to what appears to be a bottomless hole in my abdomen but like all things surgery-related, there's nothing exactly like seeing it on your own body.  My surgeon packed the wound with a betadine-soaked gauze, removed the packing a day after surgery and instructed me to leave the wound open to heal.  It was difficult for me to imagine how this would heal (or if it would heal!!! more on trust issues later this post....subtle foreshadowing...), and although my wound took longer than expected to ultimately heal, here is a picture of the same wound roughly 3-4 weeks after surgery:

3-4 weeks post-op
I stayed in the hospital for about a day after takedown.  Walking, eating and drinking to help stimulate my system all helped me get out of there since my medical team wanted to wait for me to pass gas and have a "BM" - it was basically green liquid the first time but it definitely looks like poop now!  I went home, took it easy for a few weeks, changed my gauze dressing a few times a day to make sure the wound stayed clean and dry, showered normally, went for walks, and, well, that's about it.  I was going to the bathroom to have a BM about 6-7 times a day - about as often as I need to pee, really - with minor incontinence at night time - I wore a pad for the first week or two.  Now I am down to 5 BMs a day, I sleep through the night, no incontinence, full control, was on a soft/low fiber diet for 3 weeks post-op but now eat whatever I want (including dark chocolate, raw kale, almonds, popcorn, coffee, spicy thai food, etc).  I have not experienced any urgency and I've been able to go bathroom free for at least 6 hours during the daytime, while active.  I really put this to the test when I went on a 9 mile hike the other day but did just fine!  

When I started using my j-pouch, I would rinse the area with warm water after having a BM, using a travel bidet, pat dry with soft TP, then apply some diaper cream and a 2x2 gauze pad to protect my underwear.  I'm doing this less and less now but these tools were SO nice to have in the early days

Diaper cream (high zinc oxide content is key!) and travel bidet

One thing I was under prepared for were the crazy j-pouch spasms.  So while the pouch is adapting, it's perfectly normal to experience some cramping or spasms in that area.  I didn't know this or didn't expect it to feel as intense as it did.  One night in particular I was tempted to go to the ER.  But the spasms decreased in frequency and intensity over a week or two post-op.  No big deal and perfectly normal for new j-pouchers but worth mentioning it so you are prepared for this if/when it happens to you!

My follow-up with the Physician's Assistant on my surgical team (she is FANTASTIC, btw) about four weeks post-op was quick and easy.  She asked me to come back in about nine months for a pouchoscopy and told me to call if any questions came up.  After this past year, not seeing a doctor for a nine month period seemed inconceivable, frankly.  No offense to doctors, but for the first time in a long time, I felt liberated in many ways.  Free from UC, highly frequent appointments, ostomy supplies, expensive medications, and free from the toilet.  

Before moving forward with surgery, I heard people refer to j-pouch surgeries as "unspeakably gruesome" and comparing it to a "slow walk through hell".  While this process wasn't always fun and certainly wasn't easy, I think those descriptions would be too much of an exaggeration given my own experience.  The decision to move forward with surgery was one of the most difficult choices I've had to make, but I am so glad I went for it and I am so grateful for such an amazing surgical team.  Since the odds of developing UC are low, and then developing steroid and biologic refractory UC is even lower, it's easy to start to feel helpless and like your health is totally out of your control and odds are meaningless.  Although the success rate of this surgery is high and it offers so many benefits, it still isn't (and won't ever be) a guaranteed success.  After having severe UC, it's difficult to trust the odds but I wholeheartedly feel that my faith has been renewed, several times over.  I feel like I have my life back.

Yes, there is a chance I may develop pouchitis (which can be treated with a course of antibiotics) or I may get dehydrated more easily than someone who has a perfectly healthy colon, but compared to what I was dealing with, I'm more fine with making that trade-off.  I am no longer in any pain or discomfort, I no longer have a huge inflamed organ in my body and I no longer take any powerful, expensive meds.  

So far, being a j-poucher is pretty f-ing awesome.