Sunday, June 29, 2014


Yeah, yeah, I'm still here. Bad news is I'm starting to become lucid, too. It's always best when you're relatively unaware (or unconcerned) with what is going on due to high amounts of painkillers and other kinds of mind-altering drugs.

So, out of boredom I am going to write a post that I've been meaning to write for three years now. I have not written it because I didn't want to come across as rant-y or unappreciative or didactic, or any other kind of adjective that is unlikeable to the masses. But the thing is that I have a lot of experience in this area and a lot of people (fortunately) don't. My dad has undergone 7 major surgeries, spending months in the hospital and years in acute care, so I have vast experience as an observer, family member and advocate. I have had UC for 11 years and have undergone 5 major surgeries, spending a total of 3-4 months hospitalized, so I also have an intimate insight as a patient. What I want to write about is this:

What do you do when a family member or friend is sick, hospitalized or recovering from surgery?

Again, I am only writing this because I see the blank look of "I very much want to help, but have no idea what to do" on so many people's faces. And rightly so. If they and their families have been blessed with good health, why would they know what to do? I just think it's downright helpful and from a patient's perspective (I have many IBD friends!), so many of us say the same things over and over about what we expect and/or need from all you healthy people out there. So, here are the "Top Ten" things you need to know:

1. Reach out!!!!! Don't be afraid of saying the wrong thing. Send a text, call, leave a voicemail, send an email, leave a Facebook post or message. It doesn't matter your method, it's just very important that you do. It makes a patient feel like a million bucks when you do it, and if you're close to said patient, it definitely does NOT go unnoticed if you don't.

2. Don't expect a response!!! We are often overwhelmed by taking care of our substantial needs for rest and by the amount of people reaching out. We LOVE to listen to the VMs, read the texts and emails, but we'd be spending all of our days responding and picking up the phone rather than recovering and resting if we responded to everything. Trust me- your notes get read and they are SO appreciated.

3. Don't ask, "what do you need?" - I will never, ever ask anyone for anything, and a lot of patients are like this out of pride, embarrassment, or just a genuine sense of not wanting to bother anyone. JUST DO IT! Which takes me to my next point…

4. Drop off a meal, show up and babysit, or if you have no time to cook, send over a gift certificate for a pizza. It's so hard on a family trying to not only take care of another family member, but to also juggle all the essential tasks that "down and out" family member is not capable of doing. Trust me, just show up with something helpful to offer. It shouldn't cost much or take much time, but it goes a lot further than an expensive gift and is much more appreciated!

5. Don't forget about a patient's family. Sure, surgeries and chronic illness are hard on a patient, but they are even harder on a family. Call the patient's family and see how you can help, or as stated in #4, just show up at THEIR house and do their dishes or let them escape to the grocery store for an hour. Give them just a little time to feel human.

6. Always call before a hospital visit - this is especially true in those days when you are freshly post-op. I know that I am never up for visitors in those first few days. Your rest is too important and you are just feeling too downright out of it to interact with anyone- but that's just me. Others may definitely be up for a visit. Towards the end of my hospitalizations I am dying for visitors- but a 9pm visit is never exactly, well, welcomed by me no matter what the stage of recovery. All of you that have spent time in hospitals know what those nights are like!

7. If you can, stop by the hospital! Now, the hospital is not always close and everyone is super busy in their lives and of course this is not always possible or, as mentioned, even necessarily wanted by the patient. But when your jailed up in your room for a week, nothing can cheer us up more than an hour-long distraction from a loving friend or family member. It goes a long way in showing how much you care.

8. Keep your anxiety to yourself! We're the ones in the hospital with tubes shoved up all of our orifices, we have enough anxiety in our lives, so leave yours at home please!

9. Ask questions!!! It shows that you care about what is going on and if you don't ask questions, at least don't make assumptions. When I've been NPO (no food or liquids) for 10 days and come home to have my first meal, I don't need anyone asking me, "should you really be eating that?" Be an informed family member and friend.

10. We like presents. Especially ones that matter. Flowers always cheer me up, don't get me wrong, but a small donation to Team Challenge (that probably costs less than that bouquet) means much more, or go for a run and donate the proceeds to CCFA in the patient's honor through Charity Miles, or cook a meal so the family has one less thing to worry about. These are all things that make a real difference. What we patients really need is a CURE and on a very practical level, we also need some food in our bellies. It shouldn't cost much, but think of a way that you can make a gift that matters.

As a last note, just don't do nothing. You don't need to do all 10 of these things, of course, but just a card in the mail or offering an hour of your time to help out goes a LONG way. We're all busy, of course, but just remember that these are the times when friends and family are needed most!

Thank you, thank you to all of you for the absolutely overwhelming outpouring of love and friendship over these last couple of months. This was in no way in response to a lack of receiving all of these very cherished gestures, but quite the opposite. I'm really writing for those blog readers out there that aren't as lucky as I!

Feeling very lucky and loved,


Saturday, June 28, 2014

Post-Op Update

Ok, maybe I'll offer a short update. First time I've been able to flip the laptop open!

Surgery went very well. It was three hours long. The laparoscopy quickly turned into a laparotomy (meaning it went from scope to a midline vertical incision down the center of the abdomen). I had part of my small bowel resected and all of the fluid from the "cyst" was removed. They also removed a lot of scar tissue from my small bowel and my abdominal cavity. All in all, very successful, but not exactly "best case scenario" of no bowel resection/laparoscopic shorter surgery.

Things have been moving along slowly post-operatively. I was running a high fever, but that has been gone for more than 24 hours now. I am still NPO (no food or liquids), but had my epidural catheter removed from my spine this morning. Foley catheter has been out for a couple of days, too! Up and walking, not without support yet, but up and walking a bit nonetheless. Pretty severe abdominal distention still going strong, accompanied by now more severe pain (now that my "epi" is gone).

I was begging for a Sunday discharge, but that's not looking too likely at this point. Let's hope for Monday! I never like to see three of the same day of the week in the hospital in a row, and seeing how I was hospitalized for a few days the week before my surgery, if I wake up here on Tuesday that would mark the third Tuesday in a row being in this very uncomfortable bed! Aiming to minimize this hospitalization to 7 days- wish me luck.

I'll update upon discharge or if anything of significance happens. Oh- and I got the BEST SURPRISE VISIT EVER FROM THE MOST SPECIAL PERSON EVER TODAY!

For now- go get your Team Challenge on and kick this disease's a$$ for me, will yah?

Monday, June 23, 2014

Abdominal Surgery #5 is Knocking: OR Bright and Early!

Ok, here we go! While I have been cursed with bad luck in many aspects of my life, I seem to always have the luck of the draw when it comes to O.R. times. Heading into NYPH at the crack of dawn tomorrow and scheduled to be wheeled into the O.R. at 7:30am. Already in the thick of my pre-op fast and already longing for a cookie. Sadly, I must bid adieu to good ole' F&B for quite some time, but if all goes well, perhaps I can celebrate the weekend with some Gatorade and then bring in July with a bang by indulging in my first nibbles.

I will try to coerce some family member or friend to update my blog tomorrow and Wednesday, but I am sure they will all be distracted and my ability to make threats or pleas will be limited. Though I know they are big fans of my blog because, when updated, they tend to get slightly less bombarded with texts and phone calls to tell the same story over and over. I LOVE that so many of you reach out during these times, though, so just because they can sometimes get stressed by the repetition, it shouldn't stop you from reaching out if you'd like to! Billy and Pops will be with me tomorrow, and brother M will be at some point as well. They'll be answering my cell, too. Though I am not a "believer," if you will, please pray that I get hooked up with some super posh penthouse hospital suite post-op.

Ok. Deep breaths. I've got this....

Sunday, June 22, 2014


Dress for Mike & Kim's wedding 
Ho hum. Just over 24 hours pre-op and checking out the dress that I had ordered for my very dear friends' wedding that hubbie and I were supposed to attend last night. Hubbie finally pulled the duct tape out after 36 hours of hearing me obsessively rant, "we should have been there. We should have been there. We should have been there."

I think that, perhaps, the combination of being a stay-at-home mom with a limited social life and living with chronic illness makes missing events such as these even more piercingly regrettable. Not to mention the guilt of being a no-show.

For all my IBD friends, or my readers living with chronic disease: what coping strategies do you have in your pocket for dealing with repeated social isolation and unexpected disappointments? I feel like my bag of tricks is almost empty, and I could use a few more.

Some creamy gelato in my belly is about all I've got for now...

Friday, June 20, 2014

Mystery Surgery #5 - Strictureplasty or Bowel Resection? #IBD problems

Hello IBDers!

Just a quick post. Was discharged yesterday after yet another small bowel obstruction (SBO). It's getting old, this whole IBD game. I am finally headed in for abdominal surgery #5 on Tuesday morning and I've never been so anxious. So many medical disagreements and so many unanswered questions. My consent form looked like this:

"Laparoscopy, possible laparotomy, possible bowel resection, possible strictureplasty, possible blood transfusion and removal of peritoneal inclusion cyst"

Upon asking how long my surgery would be, I was told, "It's impossible to say." Upon asking how long my hospitalization would be, the response was, "At least five days, but by now you know that is also impossible to predict." I was told the likelihood of laparoscopic success was low, but at least they would "fix up my scars, make them look nice." I've been told by many other doctors that removal of more bowel will result in "big problems for me." How helpful! Just pass along another Xanax, thank you very much!

Many of you know that indescribable feeling of laying on the crucifix-form table with the anesthesiologist leaning over you: the moment of no return. When I "go under" on Tuesday, I will have no idea how much of me will be left upon waking up, how my life will be affected, or what the road to recovery will look like. All I know is recovering from a surgery like this SUCKS. I hate nothing more than NG tubes, than being NPO for five, six, even fourteen days. Than being away from my little one. And that's just a small sampling of all that I loathe about my upcoming experience. But at least I have the man that invented strictureplasty operating on me. And at least I have perspective.

You'll be hearing from me during this journey, for sure. For now, let's all keep our head above water, and check out my view as a Mama dealing with this BS over at Dear Evangeline!