IamA cancer survivor with a mutated gene CDH1, no stomach, and a LONG list of other ailments. AMA!

Will you ever get better?

Not that I'm aware of.

What do you enjoy most about life?

Having been through so much, I appreciate the days I end up feeling "good" physically. I think that a lot of people take that for granted. I also enjoy learning, reading, and growing as a person.

I have cyclic vomiting syndrome which causes me to vomit every morning I wake up and lose my balance. I totally think just feeling good is the greatest thing as well.

Random question but do you smoke marijuana?

Yup I'm a licensed medical patient and caregiver actually.

Do hot showers make the nausea better?

Zofran makes nausea better. Haha.

It's the random days when you expect them to be just like any other, but even just one thing doesn't go wrong, and it makes you feel like you're 4 on Christmas morning. Vomiting is the worst, I hope that you have alllllll the good days and as few bad days as possible.

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My day today was alright for the most part. I had a 3 hour "crawl in a hole, moan and groan" nap but woke up feeling better. I've got a belly ache at the moment but I've got medicine to stop the spasms. All in all, a decent day. How was yours?

...How did you have a belly ache if you literally don't have a stomach?

You know like that feeling you get when you haven't eaten...

I'll never feel that again. The chemical produced to indicate hunger happens in the stomach. Since I don't have one, I don't get that feeling of hunger anymore.

Your body is filled with nerves. This belly ache wasn't the sort you get when a person feels really hungry from not eating. This is sharp, stabbing pain in the intestinal region from spasms caused by eating in the first place.

The same reason people who have hernia surgeries or -ectomies of any kind experience"ghost pains". It's all psychological

I've heard of psychological phantom pains, but in my case, my belly pain is being caused by a combo of scar tissue and spasms.

Dudette..I've been whinging about a torn achilles tendon I did a few weeks ago.. I think I'll shut my big fat mouth now and be thankful!

Also props to you - I've heard it said that the measure of a person is not how high they climb, but how often they get up after they fall.

I enjoy that saying very much.

Something else to consider would be that one person's personal struggle and pain does not negate the validity of another's.

It really seems like Murphy's Law has taken personal interest in your health. Do you hope the mastectomy will be the last major thing you have to do battle with, or do you kind of just expect more and more having gone through all these things already?

I always hope that the last thing that happened was the end of the road for my health problems. I know that there's always the possibility for more to go wrong, but I try not to think about it. I just try to live as much as I can and move forward.

Do you get hungry?

I never get hungry but I can feel cravings for certain things. I get cravings a lot because my body is lacking in different nutrients and it tells me by making me want to eat all the cake in the world (carbs) or tons of chips (sodium). It just depends on the day.

That's super interesting, it's cool to think that our brain can figure out what nutrients we're low on and then produce a hormone that makes us crave foods rich in those nutrients. Thanks for the answer!

It's very cool and very weird at the same time. And you're welcome!

What's even cooler is that our brains learn to do this. We eat something and our brain associates the sight, the sound in some cases, the taste, and the smell to what nutrients it gives you.

"Quite badass, the brain is"

-Yoda

The only sucky part about it is when your brain tells you to eat something that isn't meant for human consumption in order to gain whatever nutrient it is missing. Pica, what it's referred to, sounds scary.

This may be stupid but, with no stomach -- how do you eat?

By putting food in her mouth, chewing, and letting it slide down her throat.

How she digests it is a whole other question.

Edit: didn't realize she was a she. Sorry!

I'm not a he. But yes.

Exactly the same as everyone else, except my food goes down a partial esophagus into a tiny little pouch made from small intestines and from there proceeds to get digested in the rest of my small intestine.

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No need to apologize! I never feel hungry because that's something that happens in the stomach. I can still vomit but it's very painful and violent because my body has to work extra hard to push it back up and out. Often times, I feel as if I've been beaten with a heavy object after vomiting because it takes every muscle I've got to get the vomit out. Yes, I can feel full. It happens often and very quickly after eating.

First off, I'm so sorry you have to go through all this, and I wish you well. Where do you find your inner strength to get through this? Is there a specific religion, philosophy or hobby? Or it more of a survival mode that kicks in?

I don't have any sort of religion. I suppose what drives me is the fact that I have plans for myself and I want to see them through. I'm not going to let my body ruin that for me. If I could get through all I have and continue living then I can conquer anything if I set my mind to it. I want to see the world, make a difference in as many people's lives as possible, learn as much as I can about as many different things as I can, and be successful (in reference to my career and my goals).

Thanks for doing this AMA! What sort of problems come up if you have no stomach at all? How do you overcome them?

My body produces far too much bile sometimes which causes me to feel pain, vomit, and/or have it come out the bottom end in copious amounts. If I eat too quickly, drink too much liquid, or randomly happen to eat something that doesn't agree with me I can have something happen to me called "dumping syndrome" where my GI tract goes into super overdrive and moves much too quickly. This causes dizziness, breaking out into a clammy sweat, disorientation, pain, diarrhea, vomiting, and heart palpitations.

Do you have dental problems from all the vomit? I'm sure the acidity wreaks havoc on your enamel.

Also, are there certain foods you can't eat?

Thanks for the AMA. Very interesting.

Yes, I do. The enamel on my teeth has worn down to the point that you can see the really sensitive, bright white spots underneath. Sweet things make my teeth hurt, cold things, and hot things as well. I use enamel health toothpaste and mouth wash to try and help the sensitivity.

As for foods that I cannot eat, the celiac disease means no wheat, rye, or barley. If I eat any carbs at all, I have to match that intake with protein to keep my blood sugar from plummeting. All the fake sugars like high fructose corn syrup make me feel sick and make my blood sugar go low. Salad is borderline useless for me to consume. I'm lactose intolerant so no milk. I take pills so that I can eat things that have milk in them like cheese or chocolate.

I also cannot eat and drink at the same time unless I take tiny, tiny sips.

ouch, have they recommended removal and replacement with dentures?

Oh my, I hope it never comes to that! I really would like to keep my teeth, even if they ache when I eat.

So as a diabetic I have to object to the term fake sugar in combination with high fructose corn syrup. Nothing fake about it as far as I am concerned. So I'm wondering what is going on there with you. Do you know why this causes your blood sugar to drop? I would expect the opposite.

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Exactly.

Do you have a family history of these ailments or are you just incredibly unlucky?

There's a family history for every single ailment I face, but they are one to a person. I'm the individual who got it all at once.

When you wake up in the morning what do you look forward to most in the day?

When I wake up in the morning, I'm happy that I awoke. I'm thankful that it's a good health day or glad that it's not as bad as it could be. I look forward to getting what I had planned for that day done.

Wow! That is such an inspirational response. You make me feel like I should be doing more with the life that I was given.

You never know what is going to happen from one day to the next. It's definitely worth it to make sure that you never have to say, "Man, I wish I had done that."

That are a lot of things... I hope you get better soon.

Can I ask how it is eating for you? Or do you absorb nutrients intravenously?

Eating is somewhat complicated. A multitude of different issues converge to make the consumption of food and drink to be more of a chore than something that is enjoyed. I need to take lots of supplements, get vitamin shots, and possibly will need IV infusions at some point. I have to eat 6 or more times a day, but small portions. I can't have too many carbs or it'll set off my hypoglycemia. I also need to keep my diet high in protein, calories, and fat in order to keep my weight from plummeting. Eating a lot of protein makes my pancreas angry a lot of the time. Anything and everything can (and usually does) make me feel nauseated. Also, having no stomach means I never feel hunger, ever.

Thanks for the answer.

You're welcome.

I'm sorry if this seems stupid but... how do you eat without a stomach? Does it just pass straight from (what's left of) your esophagus into your small intestine without any processing from stomach acids etc? If so - how does that impact actual digestion?

The body is an amazing thing and it's especially apparent when a person has something happen to them like a total gastrectomy.

At first, the body freaks out because a very major and integral piece of itself is missing. But after a while, it starts to rewire itself into working without it. The small intestine replaces the stomach as the first point of digestion. It's a lot harder for the body to skip the stomach piece but it works. Absorption issues can manifest themselves, so can chronic constipation or chronic diarrhea. This all depends on the person and the type of foods they eat on a regular basis.

My body is esophagus > jejunal pouch > small intestine > large intestine.

Have your doctors put you on Creon or pancreatic enzyme meds?

Right now I'm just taking Cholestyramine with meals for the over production of bile in my body. My docs want to try and keep my body working on its own as long as possible before I replace its functions with medications. I watch what I eat to make the load on my pancreas lighter.

What do you do for a living?

Do you live with somebody whom takes care of you?

What inspired you to do what you do for a living?

I'm a graphic designer, writer, illustrator, and web developer. I, for the most part, take care of myself. I don't like to ask for help or rely on other people, it's because I'm stubborn. I wasn't really inspired to do what I do for a living, perse. I was born with a knack for it all and really, really enjoy it.

Wish you the best of luck and it's interesting how you say you just enjoy it. When I was about ten I decided to draw once without doing stick figures. Spent two hours and drew something really decent. Never really practice but am somehow good at it and it's fun, although I'm not patient. I understand the inspiration. I don't have any bright ideas or sudden concepts to draw, I just get paper, start drawing a few things until something comes up, and just draw. Funny how you make a living with something you aren't exactly inspired to, huh?

Got any drawings or something, I'd like to see if able? Kinda wanna see what you can do! Good luck with everything! Have a good day also!

I do have "Aha!" moments or get urges to create, but I wouldn't say that's what drives me to be an artist. I'd say it's probably better to make a career out of something you love doing and that comes naturally to you, because then you never have to call it a job or dread doing it every day.

I've got a portfolio website if you'd like to check it out, though I haven't posted anything new in a little while (I gotta get on that):

http://sarahgreenhill.com/

What is on your bucket list? and What on your bucket list (or cancer list if non-terminal) have you done?

Bucket list: travel the world, eat around the world, pet a panda, buy all the cute things in Japan, read all the things, play all the things, see Yellowstone before it explodes, own a pig, see an Imagine Dragons concert, work at Google, and go camping.

this is an appropriate list. i approve. Do you watch One Piece?

Not even the healthiest person can survive watching one piece from episode 1 to current.

Ill let you know I've had cancer twice, sepsis once and still have serious issues from both the cancer and the sepsis. I still watch One Piece and a load of other bad shows just to pass time. Theres only so much to do when your a prisoner in your own apartment. I'm up to current episodes of One piece, and I'm not dead, but I wish i was so there's that.

I'm VERY familiar with the term "prisoner in your own home". At least it can make getting out feel special.

I've never watched One Piece before, but it's been suggested to me. I do, however, go through entire shows while stuck at home. I'm currently finishing up Gilmore Girls.

I sometimes watch this Imagine Dragons concert because it almost feels like you're right there. I saw them in Germany (not in Sweden) but the show is the same – except for the warrior helmet.

Just to pass the time until they're on tour again! :) http://www.youtube.com/watch?v=rcTxGWIMNpc

Thank you for that. Aside from the fact that I love their music, they've always seemed to be a great bunch of people. I'd be confident in saying they're my favorite band. Lucky you got to see them! Whenever they're anywhere close to me, tickets sell out instantly.

google has offices in Japan. just saying.. best to you sista!

Hah! Now see, I don't know if I would want to necessarily LIVE in Japan. But I'd like to learn the language and visit often. Thank you!

Have you considered implanting your head on another body?

No, especially considering that some of my issues are inside my brain. Replacing my body or my brain isn't a thing yet, and I'm not too sure I would want to be the equivalent to a Cylon.

How long did it take for you to adapt to your current lifestyle, with not having a stomach and all?

I'm still having GI trouble and I had my stomach taken out in 2011. It got somewhat better about 6 months ago compared to before that. My small pouch needed to be fixed because it was flopped in on itself and I had to have my gallbladder removed. That helped me some. I'm not sure if it'll ever be 100% but I suppose we could say it took three and a half years.

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I included everything from A to Z.

Don't take this as an insult, but how in the hell do you have the will to keep living? I sometimes feel like I'd rather kill myself than get out of bed for work.

I don't take it as an insult. I'm still here and life may be tough, sickness may suck, and living life according to my limitations is irritating at times; but I still believe it's all worth it. For every negative thing in this world, there's something equally as beautiful and wondrous lingering out there. I have things to do, to see, people to meet, stuff to learn. I'm also a "rock head" and have never given up on anything, I don't plan to start now.

What do you enjoy learning about the most?

Gosh, that's an extremely hard question to answer. I love to read so I'm always going all over the internet getting lost in articles and subreddits. I also enjoy learning new things about web development, illustration, graphic design, writing, or anything else related to what I do for a living.

Can you do some type of sports?

I don't really think I have the stamina to play any sports. I used to play some when I was a lot younger.

I'm sorry for it but never say never, in golf you don't need stamina :)

EDIT: or target archery, don't you like Katniss?

I just told my father a couple days ago that I wanted my own compound bow, actually.

Do you know of an underlying cause for all of your issues? I'm wondering if it's in the same family as what I have, Ehlers-Danlos Syndrome, but it's easy for me to put things into that mold since I know it so well.

Also, what's the best thing you've read recently? Doesn't have to be a book :D

You know, I have really considered that that may be something going on with me. Auto immune diseases usually happen in tandem, many disorders and medical issues connect to one another. And it does seem awful odd that SO many things would go wrong with my body but be completely unrelated.

The best thing that I've read recently is probably Maus.

I don't even know where you'd start because I don't know the specifics of what's going on with you. Basically, EDS is a genetic defect in the way collagen is built in your body. Faulty collagen = a whole lot of messed up other things. But there are a million rare diseases and a lot of things about medicine that I don't quite understand. Coming from someone who is also chronically ill, I wish you many, many good days.

I read Maus in high school and loved it. Graphic novels never seemed like something I would enjoy and I've read several in recent years that have been great and way exceeded my expectations. Another one I read is "the road to god knows" about a girl who's mom has Schizophrenia. Pretty depressing but a good read I thought. Now I want to read Maus again...

I'm always looking for great reads suggestions. I'm going to have to pick up "The Road to God Knows". c:

The body is a strange and confusing thing. Its intricacies make it tough to pinpoint anything complexly wrong. Unfortunately, I'm one of those people where it's never readily apparent what's wrong. My pancreatitis took almost an entire year to SOMEWHAT figure out but the doctors still don't even really know why or what kicked it into faulty activities.

I hope that you get loads and loads of good days as well. They're a blessing.

Forgive me, I'm still having a little trouble understanding how the food gets processed through your system. Is there only certain foods you may eat? How exactly does the food get digested?

When the stomach is removed from the digestive tract, the body goes into a sort of crisis mode where it re-evaluates how to continue operating properly without the stomach anymore. So when food passes from my esophagus to my little pouch and into the small intestine, that's where what I eat and drink gets broken down and absorbed into my blood stream. Certain things like raw veggies (salads) end up being useless to eat because my body doesn't break that down or absorb much from it. Sometimes I crave them, so I will eat some salad anyway. But mostly, I just avoid whatever my body tends not to agree with. Each person who's had a total gastrectomy works differently too. My father can drink soda (that's all he drinks) and eat as much sweets and carbs as he wants without fail. I, however, cannot.

My grandpa had stomach cancer too and he had to get his esophagus connected to his intestines. Did they do this to you? Also don't get addicted to pain meds if you are taking any, he was a nice guy but put his pain pills as his top priority and it was ugly

I don't take narcotics unless absolutely necessary. I've been through withdrawal several times because of the pain meds they put me on to keep me comfortable. I'll tell you that withdrawal in and of itself is probably one of the worst things I've ever gone through in my life.

My esophagus is attached to a little pouch made from intestine, and then that pouch is attached to the rest of my small intestine.

If you could choose between Stannis or Daenerys which one and why?

Always the Khaleesi. She's powerful, caring, and awesome. Much like I'd like to see myself. And dragons!

Thank you for replying! (Though the Mannis is the one true king!) ;)

You're welcome :D

When did all of the symptoms for your various ailments begin to manifest themselves? Was there ever a time you considered yourself "healthy?"

I've had problems since birth, actually. But nothing ever clicked or made sense until I got older. I'd say that as a child I was in a limbo sort of state where I was mostly alright and no one suspected differently. The only things manifesting themselves as a young one was the lactose intolerance, autism, and GI upset (which when I think about it was probably the celiac disease).

When I turned 16 is when the shit started hitting the fan. It took doctors a long time to narrow down why I was having suffering but after many tests it came up as celiac disease. From then on I was on a gluten free diet and things seemed to be fine.

My family found out about the CDH1 gene being present in 2010 when my father, cousin, and uncle all suffered from gastric cancer at the same time. In testing them, they found it was genetic and proceeded to test everyone else in the family. I, however, had started with the same symptoms they were having before the cancer showed its ugly face. Severe heartburn, vomiting, pain when eating, diarrhea. Seemingly unrelated to anything but then the day came when my brother and I went for our genetic testing results. He did not have the gene, I did. From my total gastrectomy on, my health has fell down like dominoes.

How do you get nutrition if you have no stomach? Do you inject nutrients directly into your blood stream?

My intestines do the work where my stomach would have, and what I lack I get through supplements and shots.

I'm so sorry for all you've had to endure, but at the same time I'm amazed by your outlook on life and ability to cope with it all. Shine on.

I hope this brings you a smile. Tongue in cheek, of course.

And, since I must ask a question, did it bring you a smile?

HAHAHA, yes. This definitely made me smile, I laughed out loud. That's pretty much my life except I think Mr. Burns might be slightly better off since his issues are stuck in that doorway!

Is there no such thing as a stomach transplant? Or would that even help at all?

It wouldn't help me. The body labels its cells. The gene that I have that causes the different cancers see the cells labelled "stomach" and "breast" and mutates it. So it doesn't matter who's stomach or boobs I had, the gene's evil plan still fulfills itself.

Oh wow I did not know that. Thank you for the prompt answer! Sending healing energy your way!

Thank you muchly.

Thanks for doing an AMA What drives you to always be happy and have hope? I bet you must have a very supportive family, right? Last thing, what are your hobbies and dreams?

I don't really have a reason to be unhappy. My family is supportive-ish. They tend to get annoyed because it always seems like when one thing is okay, something else "breaks". They're always there though when something goes wonky. I have hope because if I dwell on the bad bits, I'd always be miserable and I really don't want to be that person.

Hobbies and dreams: I'm a HUGE video game fan. I'm always playing video games, own pretty much every single Nintendo system aside from the Virtual Boy and the original Gameboy. I love reading books, graphic novels, and comics. I also enjoy the occasional Netflix binge. My dreams are vast. But some of them include working at Google, visit every country on my "need to see" list, and hang out with some pandas.

In what state was your surgery performed?

It was performed at Smilow Cancer Hospital in New Haven, CT.

Do you have a S/O, and if so how are they handling all of this? I assume there is a shortened life expectancy associated with all you have been through, has this changed the way you do/would view relationships? Sorry if the question seems inappropriate... I just recently had a bone marrow biopsy along with a multitude of other tests. In a couple days I'll be going over the results with my oncologist and I'm terrified of how this will affect my fiancé/our relationship.

I have the chromosomal Jak2v617f mutation (found out via the online patient portal) and signs of one of the myeloid proliferative disorders.

First of all, I'm super sorry that you have to go through that. As you can see below, I'm married. But relationships/friendships have always been tough to hold onto. It's easy to question your own self worth when people don't want to have anything to do with you, just for being sick.

When I was waiting on my genetic testing, it felt like an eternity and the horror of it all was a heavy weight. Just keep reminding yourself that you're here now and that whatever happens, there's always something positive to be found in the mess. Like Dumbledore said, "Happiness can be found, even in the darkest of times, if one only remembers to turn on the light."

I'm curious as to your dating life, has it been affected?

Yes, it has. I actually just got married, but before I met my husband, dating was extremely difficult. I made it a point to start letting people know my issues before I got too attached because most people just turn tail and run when you show them a laundry list of medical issues.

Besides romantic relationships being a failure for a long time and even being broken up with by people that thought they'd "give it a try" and got too freaked out, friendships are rather hard to come by as well.

One of my closest and dearest friends decided it was too much for him and never spoke another word to me starting before my gastrectomy. He never visited me in the hospital, texted, or called. When I was released I went with my mother to Target for some supplies and saw him down the end of an isle, our eyes met and he turned around and ran away from me, literally.

I see it as most people feeling as if it's not worth getting to know or caring about someone who is sick enough to lose at any moment, but not sick enough so as to have certainty that it WILL happen sooner rather than later.

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Wasn't ever in that "emo" crowd. It's hard for me to narrow down to one band that is my ultimate favorite. Imagine Dragons, fun., Owl City, System of a Down, The Beatles, Steve Miller Band, Billy Joel, broadway musicals/Disney tunes. It's a long list. As for artsy, well yes. I am a graphic designer/illustrator/writer/web dev after all.

How do you find out about it? How does it all started? I hope you Get well soon!

Finding out about each thing was a slow and agonizing process. I'm one of those people where diagnosis takes forever because blood tests and other simple ways that work for most, don't work for me. It's a lot of trial and error. It started when I was born and it's never stopped since.

Have you ever tried smoking marijuana? Because the magical plant can help treat a number of different illnesses i saw you write down.

I'm extremely, violently allergic to marijuana. I'm not sure how my body would react if it was taken in in a different form. Smoking it, however, causes such pain and agony that I'm left worse-off than when I started.

Do you do medical research?

If you consider reading a lot about medicine in general medical research, then yes. If you are asking whether or not I'm a scientist conducting medical research for the betterment of mankind, then no. But I wish I was. I'm rather obsessive in my interests so when I like something, I read and read and read about it. I also love knowing how things work.

I have so many questions. But I want to know about your insomnia. Are you professionally diagnosed? How long do you stay awake? How long do you sleep? Do sleep aids work?

I ask because I have trouble. Calling it insomnia feels like overkill. But I cant sleep. I go 40 hrs without it before I get tired at all. I have to drink alcohol to sleep. I've tried vitamins. Ambien. Not even cold medications like nyquil make me tired. Even when all I want is sleep. But I'm wide awake. I dont know if this is insomnia and I dunno what to do. Knowing how another deals might help. I don't even know if it's insomnia I just know I can't sleep. It's been this way for 11 years, before I ever drank.

Well I'm no medical doctor, but I'd say that it sounds like you've got insomnia to me. Mine is professionally diagnosed, yes. I take prescription medications in order to sleep. I'm thinking that I get this from my father because he also has insomnia and takes prescription meds to get to sleep.

If I don't take my medicine, I will be awake for days. The only time this isn't true is if I've not slept for 1 - 2 days and do something extremely physically exhausting. Staying awake isn't something that is a choice, my body just refuses to sleep. Laying in the dark, earplugs, calming techniques, over-the-counter sleep aides...none of that works. When I was younger I used to get by switching back and forth from Benadryl to melatonin.

I can be awake for 3 or more days in a row. By day three I start hallucinating and run on a zombie-autopilot. When my body crashes (without any medical help) I will then proceed to sleep for 1 - 4 hours and then go another stint of no sleep. It's absolutely horrendous. I really hope you find a way to get around your sleep issues because I know just how terrible it feels.

First off, great job on keeping a positive attitude! I'm sure science will continue to strive to find cures for your problems. My question is do you have to eat frequently to maintain nutritional goals? Also, despite your situation you're quite an attractive geek!

Thank you muchly for the compliments. c:

And yes, I am basically eating 24/7 in order to maintain what weight I have left on me. Instead of three major meals, my day consists of many small "snacks" a day plus the larger sized "meals" in between. This is partly to keep weight up, partly to keep my sugar from bottoming out.

Hello,

Kinda of late to the party but I wanted to say my father just had a total gastrectomy for his stomach cancer treatment and is going through some of the same things you are going through with the adjustment to living without a stomach. He seems to have issues consuming sugars so far, I was curious if that was the same case for you?

Also I was wondering if you going through the chemo after the gastrectomy? If you have already gone through it, how much different was it from the first time (my father has done 3 cycles of chemo before the gastrectomy and is going to do another 3 sometime in the near future when he feels up to it).

If anything I know that you are in for a long fight, I send my love, strength, support and prayers to you.

Sugars are extremely rough on my system. Carbs and sugars can wreak havoc if consumed in excess or even just a little on a bad day. Dumping syndrome, diarrhea, vomiting, and low blood sugar all can/will happen as a result.

I was told that the reason this occurs is because the body sees the consumption of foods as an indication to produce insulin. But since there's no stomach there to break the food down, the intestines do it instead and malabsorbtion causes there to be too much insulin and not enough food to make up for it. The balance is off. This causes the blood sugar problems.

The dumping syndrome happens because someone who's had a total gastrectomy's GI tract is much much shorter than other people's. Eating and drinking (especially if you've just recently had it removed) causes it to flow through rapidly sometimes, which ends up making you feel extremely terrible until you either vomit or have diarrhea. It's essentially eating or drinking and then having it immediately exit your body without the digestion part coming into play.

How did you get so many genetic disorders? What is your ethnicity/heritage? Ashkenazi by any chance?

As far as the CDH1 gene, It comes from my father's side of the family. Besides myself, there are many others who have had this gene. My father, cousin, uncle, and two aunts all had it as well. Out of everyone, my father and I are the only two that are still alive.

Seeing as they had to genetically test me, my heritage was discovered to be Italian, Scottish, and "Not-Jewish" (exact wording, exact order). I don't know if my ethnic background plays a part in any of it. I could just be a very unlucky person.

Hello and thanks for doing this.

My mother in law is currently battling Stomach and liver cancer right now. We are trying to find a way to make her life a bit easier since shes in so much pain, and can not hold down anything at all. What did you do to help take away the pain?

I was put on narcotics. But even that doesn't fully stave off the pain. Unfortunately, there's only so much that medicine and doctors can do to help and beyond that, there's just having to go through it.

What is your diet like?

Everything is gluten free, lots of sources of protein like meat, tofu, peanut butter. I have to drink fluids all through the day to stay hydrated enough. Drinking and eating at the same time, though, is dangerous. And whether you're doing one or the other, it fills you up fast. Consuming something means that you're going to be occupied by eating and processing for at least an hour. If I eat anything carb-filled, I have to make sure that I've just eaten some sort of protein source and then combine my carb intake with another form of protein so that my blood sugar doesn't go low. Sometimes this doesn't work and my blood sugar goes low anyway. Then there's the fight to bring it back to a normal level.

Were you born with this or did it come by age?

Also, you got all of my respect.

Thank you. And some I was born with (like the CDH1 gene, celiac disease, autism etc) and others happened over time.

I didn't know having your stomach removed was a possible medical procedure. How do you digest your food? Or can you only have liquid food so that your small intestines can just absorb nutrients?

The small intestine pick up the slack. I do need to drink liquid supplements like muscle milk and glucerna.

I have Crohn's. Sometimes during a flare. They give me something called TPN. It goes straight into the views through an IV or long line. For Crohn's it's to the bowel a rest I was on it for a month and not eating. I'm not to sure if there are any alternatives. Maybe OP can elaborate if there is ?

I'm on anti-spasmatic medications to keep the abdominal pain to a minimum. Things like Levsin and Bentyl really help.

Could you post some more proof, please? There's no way to be sure that the person in the video and proof image is the same one as the one doing this AMA.

Just out of curiousity, what makes you say that?

I'm a mod here. I look for proof as a matter of course. Kind of a connect the dots game.

Here's more proof for you:

http://imgur.com/a/4GunA#1

http://imgur.com/a/4GunA#2

Thanks.

You're welcome.

Do you find it difficult to enjoy sriracha?

I LOVE sriracha. People call me the condiment queen because my fridge is filled with anything and everything you can put on food. Spicy food does make me feel sick every once in a while, but I eat it anyway because it's lovely.

I have a family member who has a high chance of not surviving cancer. What are kinds of things as a family member that I can do to help; what are things I can say, or should avoid saying?

Thanks for doing this AMA!

I'm not entirely sure what you should say or not say. But I do know something that you can do to help them. Don't ever put it on your family member that they should be trying to stave off death if you know it's inevitable. What I mean, as an example, someone in stage 4 cancer with no shot of beating the disease should never continue to be hacked apart and put through chemo just to maybe live a little bit longer. It's hard to lose a loved one, but there's no reason to prolong someone's suffering for the sake of the inability to let them go.

Thanks for your advice! It's important to support their decisions, no matter what, huh?

Always. It might be painful to accept that they're choosing to live out the last bit of their life comfortably rather than continue to fight a losing battle, but sometimes that's what they want and being angry or upset with them will only detract from their happiness.

It's not giving up, it's just accepting that life ends and they don't have to suffer just to extend it.

Hey there! I feel like learning about your condition really puts my own difficulties into perspective. Really admire your ability to continue fighting and living life!

My question is, is it possible to maintain a job and go to work? Or do you have flexible arrangements like working from home, etc?

Working is touch and go. I've got a job in a deli and it's extremely tough on me, but I keep going because I keep in mind that at SOME point, I'll be able to work in my actual career. Life revolves around money and if I didn't work, it'd be even harder on me, so I am forced to hold down a job even if it kills me (figuratively).

I also have POTS, which is exhausting enough on its own. I have found that laying off the gluten and dairy really help my symptoms, so maybe your celiac and lactose intolerance is your body's way of helping you out? Silver lining?

You sound like an incredible human. Mad props. Have you heard of the spoon theory?

I have never heard of the spoon theory before, to be honest. So when I saw this comment, I went searching because that's what I always do when I don't know something. I read it and cried. I've never been able to explain that to anyone, and I've never actually realized myself that that's what I have to do to get by. It's weird to think about every single thing I do in a day being carefully thought through and planned. I've had to deal with it so long that it feels like second nature.

Thank you for thinking I sound incredible. There are many days when I don't feel like I am incredible and it's lovely when you can see someone else acknowledge you in a positive way.

You're welcome! The spoon theory is an amazing way to explain to others how you have to ration out your day. I can tell my husband "I ran out of spoons today" and he knows I'll be laying on the couch useless for the rest of the day.

Good luck to you!

I'm going to be able to use that saying from this point forward and have someone be able to understand what I mean. Thank you so much for sharing that with me.

Do you feel normal walking? How do you eat? How do you excrete? Are you planning on having kids? Sorry but I didn't read the details of every single disease because there's so many of them.

Walking around gets really bad after a while. It's a combo of things but to start with, my muscles atrophied for a while so they're a weird consistency and not that tough anymore, though they're a lot better now as compared to a couple years ago. The longer time I spend walking/standing/physical activity, the more pain I'm in at the end of the day from the weak muscles and arthritic issues.

I eat just like everyone else. My meals are just drastically smaller and I can't really eat for the sake of "this is so tasty" anymore. The small intestine picks up the slack for the missing stomach and digests all the foodstuffs in there. I do excrete waste, but it's difficult. My body does not want to do this naturally/on its own. I take medication to keep it all moving properly, if I did not take it, nothing would happen and my body would just hold onto the waste. It's happened before to the point where my belly was swollen to the size of someone very pregnant.

Speaking of pregnancy, I do want to have a child one day. The problem there is that it's a hugely complicated and expensive process. Firstly, it's been debated upon whether or not I could actually sustain another life inside me for 9 straight months. Celiac disease has the tendency to produce miscarriages if you accidently get glutened at all.

Then there's the CDH1 gene. I have to get a total mastectomy when I'm 30 so there will be no babies before that time and then when I recover from that, if I want to have a child I have to jump through several hoops. The first step would be invitro fertilization to cultivate as many eggs as possible. Then they would take them all out of my body and test each one for the CDH1 gene. Any and all eggs that don't have the gene would then be placed back in order to keep from spreading it into further generations. Once the baby is growing, they will test the child's DNA one more time to fully make sure it does not have the gene (or does). In the horribly off chance that their genetic testing techniques failed and my baby did have the gene, he or she would be faced with some of my same challenges in life and I would forever feel responsible.

Do you have any problem eating specife food?

Raw veggies/salads/anything dense make me feel ill on and off.

Without a stomach, do you ever get gut feelings or the butterflies feeling?

I can still have pain in my abdomen, but I do not ever get hunger pains. The feeling of "butterflies in your stomach" is something I associate with feeling nervous or something like that. Stomach or not, I've never felt that before. I'm assuming it's because of being on the autism spectrum.

I have chronic pancreatitis too, unfortunately. Do you get attacks often? Other than that, you have it much worse than me though :( Is it all/mostly caused because of the mutated gene? Best of luck, keep ya head up!

I'm not too sure what's related to having no stomach anymore and what's just an unlucky, random circumstance. I do get attacks often but after spending an entire year in and out of the hospital, it settled a bit and now I just really have to be careful about what I eat. If I set it off, I have to cut my food to a minimum or just not at all to give it a rest. It's scary because I get dehydrated extremely quickly and can lose several pounds in a matter of days. Delicate balance. Good luck to you as well!

Have you considered implanting your head on another body?

I don't really enjoy the thought of becoming a Cylon.