IAMA 21 year old girl who has a feeding tube to her stomach and small intestine.

From one girl to another, and sorry if this is out of bounds or rude, how does it affect your sex life?

So sex just didn't happen for the first weeks while the stoma (the wound around the tube) was healing, and now it's pretty normal, except he cant lay on top of me anymore :(

Now I lay on top of him :)

Do you ever get freaky with the stoma?

Considering I've got granulation tissue right now, I'd say it's freaky enough on it's own.

Hey my girlfriend has Ehler-Danlos! She also has occasional gastroparesis, though not as badly as you (no GJ tube). I think it's really cool that someone with E-D is doing an AMA.

Do you tend to have a lot of joint pain and issues with dislocation? My girlfriend has some issues with that, and I'm curious if that's typical.

the inital are EDS, its an easy mix up. I dislocate my hips on the daily, and shoulders less regularly. I have a lot of jaw issues. My pain on the EDS front is currently decently well managed, though someday i have day where I can't really function at all.

Both of those are classic symptoms of EDS is she aware of /r/ehlersdanlos ? they are super helpful over there.

She's not a redditor, actually. But I'll point her to /r/ehlersdanlos - she likes to at least browse it sometimes.

She's pretty informed about EDS, and she probably could have answered that question herself - I was more just curious from my own perspective. She's actually applying for graduate programs in genetic counselling!

What do you do to manage the pain, if you don't mind me asking? My girlfriend has a lot of trouble with pain management.

I have a NSAID cream for my muscle pulls and dislocations, Percocet for when pain gets really bad, and lots of heat packs. Also Tiger Balm for my fingers.

My POTS and Myasthenia have gotten so bad that I haven't really been able to do much, I imagine if I could walk or stand my joint pain would be a lot worse.

Favorite show to watch on netflix?

Right now Bojack Horseman. They got me in good.

How long have you been an android? Is it a "for the rest of your life" thing? Or is someone on the brink of some medical breakthrough that'll allow you to not be hooked up to that stuff?

The question I really want answered: Do you eat food? Can you eat food? How long have you not been able to eat? Do you miss food?

I fucking love androids. Sometimes I feel cute as hell in my electric wheelchair. It's more of a until an effective treatment comes along that allows me to get all my nutrition orally. I'd give it a 50/50 shot. Gastroparesis is usually progressive though.

I used to, now it mostly comes back up, I'm able to drink things though, though generally I drain anyway. I haven't been able to eat for a month, but even then I threw most of it back up and it hurt like hell. Eating just a bite hurt very bad.

I miss food a ton. every food looks like the best food I've ever seen. Even food that i've never tried or previously hated. Sometimes I mess up and eat something and it hurts very bad and I have to drain and I end up throwing up for a while.

Hey, there! I have one two! How long have you had your tubing?

Hey, a fellow Tubie! Not very long on this, stoma is still healing. How long have you had yours?

Since I was a year old and now I'm 18. Quite a long time.

Wow. what kind of feed do you do?

Despite having this for 17 years, I don't really remember the name but I think it's a gtube. We also have the same pumps.

yeah we do it's the joey! do you have a backpack?

also what I meant was are you doing bolus or continuous?

Continuous and no, I don't think I have a backpack for this, never heard or seen one before.

Here is my backpack! it's pretty lame since it's the one they gave me with the pump, but it works. a lot of people have cooler ones like this, this or to be honest any of these .

Is it a steady feed rate throughout the day or do you have "mealtimes"?

55ml/hr starting with 700 mL of formula. I wish sometime I could bolus feed (which is mealtimes) but my body can barely stand continuous feeds.

How's it going?

I'm going okay, just switched to a new formula and feed rate so my body is getting used to that, which is always a pain in the ass.

How are you?

Well when you put it like that; I guess I'm doing pretty good.

What happens if you try to eat food orally?

I throw up and/or I'm in a very large amount of pain for hours because it stays in my stomach for so long. Also I tend to bloat up until it leaves my stomach, either by throwing up or draining the stomach.

Fuck.

When did this develop or has it always been a factor in your life? Have you ever been able to eat food "normally"/live without a feeding tube?

Also, you mentioned bendy finger tricks..

This developed 6 months ago, though I've have had GERD and heartburn since I was a kid and remember having stomachaches so bad I had to leave places and lay in the car, this happened frequently.

I had a really good relationship with food. I loved to cook and eat. and discover new foods. I hope someday I'll get back to that. right now I'm too sick to cook so I don't feel that bad not doing it.

Here's the bendy tricks I feel comfortable doing (aka so I don't pop anything out)

I've been diagnosed as hyper-mobile and have the bendy fingers too(well bendy lots of things). I also have been diagnosed with GERD and struggled with it as a child, I missed a lot of middle school. You are a champ and I feel like a wuss complaining about my ankles rolling out on me. I know there are a lot of different types of EDS, my friend has the vascular type 4 and recently had a scare with his renal artery dissecting. I always wondered if I might have a mild form of the hyper-mobile type 3. Anyways my question if you don't mind me asking, which type of EDS do you have? And does anyone in your family have it too?

Vascular with Hypermobile crossover. My mother has it and so does her brother and her uncle. That uncle died of an aortic dissection.

I'm sorry you have to go through that. I hope someone makes an effective treatment soon. I only have one question do you get outside a lot or are you stuck in doors? (I'm sorry you have to do that but you are so brave)

I'm home bound a lot of the time, though I do go to rehab and am in a Rocky cast. I have a weird story of how those last two intersected.

I love the outdoors though, and amusement parks. I'm kind of a dork.

Are you able to go swimming? How does it affect daily hygiene ( shower/ bath) routines?

swimming no, But i'm able to shower, though some say I should cover it in plastic and tape it up. or wrap my torso in seran wrap. The internet and doctor jury is out.

How do people tend to react when they first find out that you use a feeding tube?

They get uncomfortable and then I make a joke and then they get used to it. It's a process. People don't really understand feeding tubes, or how they work.

I know I'm late :/ but if you see this or anyone else, could you explain me how it works ? Thanks :)

like how I get nutrition?

In high school I knew someone with gastroparesis as well, and she was able to drink water. I know not every case is the same, but are you able to drink liquids or do you get fluids through the tube as well?

I put 150 ml through the tube every6 hrs. I can drink water, ginger ale, Apple juice, Apple cider, powerade,and seltzer water. Sometimes my symptoms get bad and I can't stomachs any of them.

What do you do to suppress your cluster headaches? I recently saw a victim of one and holy shit, just watching makes me feel terrible that someone has to go through that much pain multiple times a day.

I use high flow oxygen. Cluster headaches are the worst in the world. When I first got them I would punch myself in the face and bang my head against the wall. It's miserable. I know someday I'll have another cluster and that will start again.

How did you find the transition from NG/NJ to GJ? (Correct me if I'm wrongfully assuming that you initially had a naso~ tube... I know it's not always the case!) I've only ever had naso~ tubes, so I'm wondering what sort of challenges a GJ poses that an NG/NJ might not.

I'm one of those strange people that did not! I wanted to but the people at the hospital were too worried about getting food into me and the risk of aspiration and infection. We went straight to the big guns, as it were.

What's it like on the nose side of the spectrum?

I'm not an outgoing person, and when I had a naso~ tube I was frankly embarrassed. Apart from the stares, it was pretty bothersome in terms of nasal irritation and I have trouble with adhesive allergies... even tegaderm! And with NJ tubes it's a pain having it placed. NJ placement requires a trip to interventional radiology. (edit: grammar)

I feel that. if anything goes wrong with a GJ it's a big hassle too.

I just want to tell you that I think you are incredibly brave and resilient and that you should be SO proud of yourself. People don't realize how tough a feeding tube can be. I have Crohn's Disease and I recently had to use an NG tube (not the same as yours, I know) that goes through the nose and into the stomach. Having to learn how to insert it was hell and it was really hard to maintain the will power to insert it each night—especially since I am alone in college and feeding tubes aren't exactly "cool" (although they should be!). Each time I used the tube, I was frighteningly aware of my own fragility—I was relying on a TUBE to keep myself fed and that felt very demoralizing. Luckily I was able to push past all of that, recover, and eventually stop using the tube after a little over a year of use.

In any case, I have three questions for you if they are not too personal:

1. What is what kind of formula you have and how much you ingest each day?

2. Does it go 24/7? Or do you only activate it at certain times of day? I used mine only during the nighttime.

3. Has using the tube affected the way you go to the bathroom? I found that it relieved a lot of pain but resulted in very loose stools.

I now use 3 can of 2cal (700ml) at 55ml/hr for 18hrs

I do it during the day and as long as I can.

YES oh my god I used to be the most constipated motherfucker because of my dysmotility and now I guess I poop almost normally. Like a little looser than normal.

Yay for regular pooping! People don't realize how much of a blessing it is to poop regularly without pain or discomfort.

seriously I use a chronic pain tracker that has an AMAZING poop scale and tracker, and to not check the "blood in stool" mark felt really good. It's the little things.

My sister has a G/J tube, but she has the combination low profile "button" port. I'm on mobile but I'll see if I can find a picture... Do you know what I'm talking about?

Anyway, do you feel your tubes at all? Have you had any clogs or difficulties? Best of luck to you!

I like it but I can't wait until I get that Mickey button port.

I clog a lot, that J tube is unmanageable sometimes :(

My sister is currently in the process of trying to be tested for EDS. The scary part is my mom and I both exhibit symptoms as well. I've had digestive issues since birth and was diagnosed with mild gastroparesis. They put me on a medication to move things along and it made me hallucinate and lose sleep. Now it's hit or miss if food is going to be an issue for me, but there are a ton of foods I can't eat now because they cause some sort of reaction one way or another. The most recent is tomato. It makes my throat tense up and my GERD to flare up to the extreme. I have such a terrible relationship with food now. It sucks. Still, I can't imagine having to deal with a feeding tube like that.

On terms of having vascular EDS, have you had any issues with that? What is it capable of causing? I've done research but couldn't find as much information on vascular as classic and hypermobility types. Is muscle weakness and unexplained pain a normal part of EDS?

Vascular EDS has caused aortic dissections in my family, very fragile skin and out of nowhere bruising. And a larger aorta in me. It's not huge or anything, but we are monitoring it. The muscle weakness is more the myasthenia gravis.

OK, I'll ask...What kind of bendy finger tricks can you do?

For your Cake Day here is what i feel comfortable doing

Do the whites of your eyes have a blue tint?

eh, some say yes some say no. you decide.

In the end I think that diagnostic criteria isn't that large. I've got a skinny tall marfaniod body. I was an easy diagnosis once we saw the right people.

I guess a positive to be taken from feeding via a tube is seeing as you're not going to be exercising your taste buds, you might as well ingest healthy foods only. More fruit/veg than average etc. Would this be correct?

I only put formula into my tube though I've heard of people taking Powerade and blended food in their tubes.

Have you tried mushrooms (the kind with psilocybin) for your cluster headaches?

nope, though the idea of it is very curious to me. I probably would if it was my only issue, y'know?

Strange question : Have you had any changes in entertainment tastes? I went through an experience that was similar in the emotional catagory and my taste in music went from classical and soft rock to heavy metal and war music. Have you had anything similar?

huh, well i have to be still for these LONG ass feedings so I ended up watching Celebrity Big Brother, just for the fact that there was a new episode every day . If it was a week day there is an analysis episode and a live from the house episode. Both of those are an hour long as well. One of my favourite people was on it. it's something I'd never watch normally but i did while feeding.

My wife has gastroparesis as a result of type 1 diabetes. She dreads the thought of going onto tube feeding. She feels ill 24/7 but still copes with medication.

What lead you to make the jump to tube feeding?

Not being able to hold food or water down for weeks and a week in the hospital, if I'm going to be totally honest.

Other pros include- Much higher quality of life in terms of not throwing up all the time. Whenever I feel sick I can just drain or vent. I am not always nauseated or in pain. Also they will soon replace the tube with a low profile button.

I have a friend literally sitting next to me he also has a feeding tube since birth I believe I was just wondering if you you had this since birth if it developed later on? If he has the same thing it's not that major because he doesn't need a wheelchair and he doesn't have a pump it just uses gravity to flow the liquid into him

Later on, though people use feeding tubes for literally hundreds of different conditions.

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Underweight and it's difficult for me. :(

What is ehrlos danlos, and what exactly is myasthenia gravis? Im to lazy to look them up right now

ehlers-danlos syndrome is a connective tissue disorder that effects collagen and myasthenia gravis is a autoimmune neuromuscular disease that attacks the junction between the muscle and the nerve. I have a very generalized form causing intense muscle weakness. I also have very poor breathing because my diaphragm is weak.

I guess you just get used to things like that, but I personally would be very afraid of movement at all times if i had that in me. Do you feel it move inside of you if you move the wrong way?

Nope. Not at all.

I learned about a boy that had something similar to you in a psychology class once... i think he didn't have a stomach or something like that and had to be fed nutrients directly into his blood stream, but the catch was that he still felt hungry because he never ate anything.

In order to keep him from dying from "starvation" he had to simulate eating by chewing food in his mouth so he could get the taste but then had to spit it out.

Do you have to do something similar to that or is your situation completely different? What does paralyzation of the stomach mean (can't digest food? can't tell if there is food in the stomach? can't produce acid?) Thanks and sorry for all of the questions!

I think the kind of tube feeding that boy was doing is called TPN, it goes directly into the blood stream.

So here's the thing with me, I'm still losing weight so we are worried about malnutrition, but we won't worry about starvation. All that is psychological.

I've definitely done the chewing and then spitting out before, especially since I crave food all the time. I really have to make sure I drain my stomach afterward because it's really easy to mess up

In Gastroparesis food wont move through the digestive track and will sit there for hours and hours or even days. It's extremely painful and more than not ends up in cyclic vomiting too.

how do you bacon?

Didn't bacon to begin with. Sorry :/

Robots trying to tell me what to do!! Can you provide proof that you can perform bendy finger tricks?

here you go.