This is why I'm in pain

No, I'm not pregnant. I know that would be a much sweeter reason for this photo. But that's physically impossible for me at this point.

This was taken around 10pm when i was trying to relax in the bath and massage my belly which often brings me comfort. But i was so bloated that I couldn't massage it.  You can see the pain in my face.

This was taken around 10pm when i was trying to relax in the bath and massage my belly which often brings me comfort. But i was so bloated that I couldn't massage it.  You can see the pain in my face.

I promised you more truth about my condition. I know it's hard for you to imagine why I'm in pain. Or why I can't move food through my intestines. Or why I have to be home a lot or cancel last minute. I'm finally going to explain. 

I took this photo last week after I broke one of my own Food Rules. I ate fish after 10pm along with some avocado and coconut ice cream. My Food Rules are based on what causes problems and what doesn't - although I'm constantly tweaking things and by no means an expert on my own condition yet. Far from it. I just know the bare minimum of keeping myself alive and minimizing pain as of now.

The reason why eating fish late in the evening is a bad idea is that it's already a risky food for me. I need AT LEAST several hours to digest ALL food, but especially a food that's so solid, before I lay down in bed. When I eat fish, I typically eat it by 7-8pm, and do ALL my tricks including: standing while I eat (no folding my intestines over!), chewing a lot and eating slowly (got to break it down as much as possible), drinking lots of warm water (so it flushes it through), walking on the treadmill (so it jiggles down), rolling on the knobby roller on both my stomach and back (to stimulate peristalsis which is the wavelike motion that moves food through intestines), take a bath and give myself a belly massage (the warm water and Epsom salts help cut the pain).

But I was soooo hungry that night! Every day, I choose between pain and hunger. And most of the time, I choose hunger because pain sounds exhausting. When I'm having a particularly bad couple of weeks, I get so hungry that I stop listening to the part of the brain that says "Danger! Pain! Pain!" which is probably what happened that night. 

This is why I find it so incredibly odd when people say "I don't know how you do that. Or, you're so good about taking care of yourself."

Dude, if I could eat chips and salsa and late night cookies, that would SO be happening. But I promise you, if you had the kind of pain I had, you'd do whatever you could to stop it too.

The "pregnant" photo of me is after I ate maybe 5-6 ounces of fish - small amount - an avocado and some Coconut Bliss. That's a LOT of food for me to eat at once. I usually eat very small portions - to give my body time to digest them and also because there are so few things I can eat, I have to space out my calories. 

If you're wondering how I can digest food within a couple of hours it's because I don't really have a colon so my "transit" time is really fast!

I was in a pretty typical amount of pain that night. But after months and months of going through this, I have some tricks up my sleeve. I got out of the bath when I realized how bloated I was (which is why my sports bra is half wet - I wear it in the bath to protect the bandage around my port needle from getting wet). 

THis is me a couple of hours later. My "before" and "after" shots aren't great because I was so tired at this point - after midnight before i felt like I could finally lay down without being in pain. I can tell my face is more relaxd in this photo - less pain.

THis is me a couple of hours later. My "before" and "after" shots aren't great because I was so tired at this point - after midnight before i felt like I could finally lay down without being in pain. I can tell my face is more relaxd in this photo - less pain.

I went on the treadmill. I roll on the knobby roller. I continued my IV fluids. THANK GD FOR MY IV FLUIDS - that's why I wasn't completely stressed out that night because those fluids really make a difference. I did my yoga stretches and I might have drank some chicken broth - oily/salty broth helps move things through. I did an enema - I'm finally telling you this - embarrassing but whatever - I do one per night usually so I can lay down without an uncomfortable belly. Laying down or sitting - especially when my torso is folded over, for example, when I'm driving - is HELL for me if food is stuck in there. This is why you'll often see me moving around in the evening trying to digest the day's food. 

After doing all my "tricks," I was better and finally able to lay down and go to sleep by around 1:30am.

WHY DOES THIS HAPPEN?

I DON'T KNOW. This is why I've been going to so many doctors for TWO YEARS. Here are the possible reasons I've collected so far:

INTESTINES ARE IN WRONG PLACE: It's not unusual for ovarian cancer patients to have their small intestines fall into their pelvic cavity.

This is my OWN drawing based on what I've been told - it's not an official drawing!!

This is my OWN drawing based on what I've been told - it's not an official drawing!!

INTESTINES ARE SMUSHED TOGETHER: After things are cut in a surgery, they aren't attached to their original ligaments so they often move around and smush up against themselves or leftover ligaments. These are called adhesions - everyone has some adhesions - their organs smush together. This is why someone that hasn't had surgery can still have issues.  

THERE IS TOO MUCH SPACE: I lost four organs! So that's a LOT of space for things to move around AND grow scar tissue.

THERE IS SCAR TISSUE: whenever you cut into the abdomen, there is risk for scar tissue to grow. I had a LOT of things cut out so.... The bummer is that they don't have machines that "image" (or photograph) soft tissue and scar tissue. So, one of the things I'm on the hunt for is someone that HAS figured out how to image soft tissue/scar tissue - but their invention hasn't been brought to market yet which can often take decades - or never if they don't get funding and help dealing with the massive amount of red tape there is for anything medical. The only way American mainstream doctors can *look* at my insides is to go in surgically AND that might cause more scar tissue - or, worse.

MOTILITY ISSUES: "motility" basically means things aren't moving through properly. This could be caused by nerve issues from the surgery or chemo, or muscle damage. I don't know much about this. I have a new motility doctor that is sharp. The other ones....

Yes, that's why this whole situation is so fucked up. Nobody even can tell me what's going on in there! I went to a motility specialist recently who is running a bunch of tests to see if something is slowing things down but at the end of it, she turned and said "you know, you probably just have a lot of adhesions and we might have to try and go in and remove some of the scar tissue." 

I've heard this before. But every single doctor, including the surgeons said it's super risky with my case - because if they cut wrong thing or cause more scar tissue...well, it's not good.

For now, my New York doctor and this motility specialist are going to run a bunch more tests. The New York doctor has some ideas which I'm banking on right now. I get my colonoscopy this week, so we'll see how it looks in there....

This was hard for me to share. But I think it gives a decent overview of why I am struggling so much. In order for you to help me find answers to my medical case, I need you to understand it! But I couldn't explain it until I understood it myself. So, thanks so much for listening and not making me feel like a gross freak of nature....

Much love,
Jules