u/Cheburoll

21F, with Ehlers-Danlos syndrome. Spent 2 weeks in the hospital because i had critically low weight due to severe gastroparesis and intestinal dysmotility.

Had a very thick NJ tube inserted during a gastroscopy a bit more than a week ago (the tube also had a drain located in the stomach.). Long story short,feeding tube didn't work as intended,my pump would beep all the time indicating occlusion, the only way to stop it would to sit perfectly still,but i couldn't sit like that entire day,i have severe kyphoscoliosis and joint issues,and sitting like that even for 20 minutes is straight up torture. They also couldn't flush it properly,there was something "blocking" it. I talked to doctors about it a billion times, they told me they will try a different formula, but it ended up not happening. So they decided to eventually take out the tube and... it was the single most painful experience i've ever had in my life. The tube got stuck in my nose,and the pain was indescribable, it felt like my head will explode, my right eye hurt like it was going to pop out. I nearly fainted a couple of times when they tried tugging on it,i screamed a lot . They got mad at me,and called more doctors. They said it wasn't as painful as i make it out to be,and trued tugging again. IT. HURT.

Eventually they ended up calling an endoscopist,and he tugged so hard,pulling it out, and said that i am anorexic for whatever reason,and left,visibly annoyed. There was a lot of blood.

But what hurt even more than the tube removal was the way they treated me. Like i was insane,or was exaggerating. It hurts. It hurts so fucking much,when my entire life people just think i am insane. When i have real and diagnosed medical issues.

Did anyone else experienced such pain during tube removal? I couldn't find similar cases online.

Also,for some context,this happened in Germany.

Feeding tube pump keeps beeping,i'm so tired

I am 21F, with Ehlers-Danlos syndrome,and 20+ diagnoses. I ended up in a hospital recently due to being very underweight,and being unable to gain weight. I have severe constipation,to the point i can only go to the bathroom using a water enema,no other treatment doctors suggested worked for me at all,no laxatives,nothing. I have severe redundant colon, colon ptosis (visceroptosis) and slow motility. I probably have gastroparesis as well,since i feel full only after a few bites,but still feel hungry,and when i try to eat more i usually just end up throwing up everything. I have limited diet (gluten-lactose intolerant, mostly eat pureed or liquid foods,because i can't tolerate much,and will throw up).

So,to the issue. I am completely new to feeding tubes,and got one placed only around a week ago. It's a very thick NJ tube with drainage in the stomach,placed during a gastroscopy. And when they tried to feed me the pump kept beeping (indicating occlusion) ,and nurses couldn't flush it. They could only flush it after i sat up,and only in this position the pump wouldn't beep. At first i could at least lean on my bed without issues,but every other time they tried to feed me if i won't sit up perfectly the pump will still continue beeping. I am so exhausted,i have to sit like this the entire day,and i constantly need to pee,because i am always bloated and my colon presses on my bladder.

I wonder if those issues could be from the fact that i have EDS, and since my intestines are so droopy they just cause the tube to kink or compress it. I also have reflux,and the food i eat just sort of comes out my mouth (i still can eat by mouth) sometimes,and i can't swallow it down. I also deal with nausea and vomiting. I am scared that the tube might be displaced,or badly kinked,and would need changing beceause of all this. Can someone who's been in similar situation share their experiences, and what helped you? I keep telling nurses and doctors about this issue,but all they do is flush the tube sometimes,and it never really works,the pump will still beep.

I am 21F, with Ehlers-Danlos syndrome,and 20+ diagnoses. I ended up in a hospital recently due to being very underweight,and being unable to gain weight. I have severe constipation,to the point i can only go to the bathroom using a water enema,no other treatment doctors suggested worked for me at all,no laxatives,nothing. I have severe redundant colon, colon ptosis and slow motility. I probably have gastroparesis as well,since i feel full only after a few bites,but still feel hungry,and when i try to eat more i usually just end up throwing up everything. I have limited diet (gluten-lactose intolerant, mostly eat pureed or liquid foods,because i can't tolerate much,and will throw up).

So,to the issue. I am completely new to feeding tubes,and got one placed only 3 days ago. It's a very thick NJ tube placed during a agastroscopy (i believe it's also a drainage tube?). And when they tried to feed me the pump kept beeping (indicating occlusion) ,and nurses couldn't flush it. They could only flush it after i sat up,and only in this position the pump wouldn't beep. Yesterday i could at least lean on my bed,but today if i won't sit up perfectly still it will still continue beeping. I am so exhausted,i have to sit like this the entire day,and i constantly need to pee,because i am always bloated and my colon presses on my bladder. And i have to drag the stand with the pump and my PPN bag to the bathroom every time. I wonder if those issues could be from the fact that i had reflux yesterday,and the food i ate earlier just sort of came outta my mouth (i still can eat by mouth). I am scared that the tube is displaced,and would need changing. Can someone who's been in similar situation share their experiences,and what you think could be wrong? Also,i haven't been able to talk to my doctor,because yesterday there was a holiday in Germany,and the doctor wasn't in the hospital. And i haven't seen him today yet as well.

On top of that my nose and throat constantly hurt so much,it's almost unbearable. I keep telling the nurses it hurts,but they don't do anything. I am in agony.

TW unintentional weight loss

I'll try to go straight to the point,but i am so anxious i'll probably end up just rambling,so sorry in advance. I am 21F, with Ehlers-Danlos syndrome and many many comorbid conditions, the most serious of which right now are my GI issues, like severe redundant colon (dolichocolon), gastroparesis, severe slow motility. Just need to vent,because i am terrified, and can't calm down.

In the last 2 years i have lost a lot of weight,more than 10kg. I have always been very skinny,no matter how much i eat, but now my weight has dropped so much,to the point it's very dangerous. My weight is 38kg, and my height is 173cm. It's horrible. I hate being skinny,i want to gain weight so badly,but no matter how much i eat,and how much i take nutritional drinks (Fresubin) i can't gain anything. I am dependent on daily water enemas to have bowel movements, i tried all laxatives and methods recommended by my doctors,but literally nothing helped,so it is my last resort right now,and i am scared that it will stop working as well. So,i came to Germany from Ukraine because no one was able to help me in my country. I've been at Leipzig Universitätsklinikum where i talked to a geneticist and got a whole genome sequencing test.The geneticist told me i need to go to the hospital,to the nutritional department,but at the time i thought i could try to gain some weight myself,which of course was nof smart,but i was so scared. I have so much trauma from years of medical negligence and even abuse. I sometimes have panic attacks when i need to go to a hospital/doctor.

Even though i was treated very well at hospitals in Germany, much,much better than in my country, i was however treated HORRIBLY by doctors and nurses in the refugee camp i was in, and they accused me of having anorexia,bulimia and laxative abuse (which is a lie. I have all of my medical documents translated to German,describing all of my GI issuses,and they ignored everything.) So now i am terrified of the same treatment in the hospital. I am planning to go to my family doc to get referral to get admitted,because i realize how severe my situation got, and i want to survive so badly,i've fought my entire life. But man,i am scared and anxious.

There's a high possibility i will be put on TPN,because that's what doctors wanted to do when i was in a hospital previously,but i did not have insurance back then,and my geneticist suggested it would probably be the great if they do this. That's also causing me anxiety,because i don't know if my body will tolerate it.

Someone please just tell me everything will be alright. Please. Would also be interested to hear if someone had similar situation to mine,and how you coped with it

TW unintentional weight loss

I'll try to go straight to the point,but i am so anxious i'll probably end up just rambling,so sorry in advance. I am 21F, with Ehlers-Danlos syndrome and many many comorbid conditions, the most serious of which right now are my GI issues, like severe redundant colon,gastroparesis, severe slow motility. Just need to vent,because i am terrified, and can't calm down.

In the last 2 years i have lost a lot of weight,more than 10kg. I have always been very skinny,no matter how much i eat, but now my weight has dropped so much,to the point it's very dangerous. My weight is 38kg, and my height is 173cm. It's horrible. I hate being skinny,i want to gain weight so badly,but no matter how much i eat,and how much i take nutritional drinks (Fresubin) i can't gain anything. I am dependent on daily water enemas to have bowel movements, i tried all laxatives and methods recommended by my doctors,but literally nothing helped,so it is my last resort right now,and i am scared that it will stop working as well. So,i came to Germany from Ukraine because no one was able to help me in my country. I've been at Leipzig Universitätsklinikum where i talked to a geneticist and got a whole genome sequencing test.The geneticist told me i need to go to the hospital,to the nutritional department,but at the time i thought i could try to gain some weight myself,which of course was dumb,but i was so scared. I have so much trauma from years of medical negligence and even abuse. I sometimes have panic attacks when i need to go to a hospital/doctor.

Even though i was treated very well at hospitals in Germany, much,much better than in my country, i was however treated HORRIBLY by doctors and nurses in the refugee camp i was in, and they accused me of habing anorexia,bulimia amd laxative abuse (which is a lie. I have all of my medical documents translated to German,describing all of my GI issuses,and they ignored everything.) So now i am terrified of the same treatment in the hospital. I am planning to go to my family doc to get referral to get admitted,because i realize how severe my situation got, and i want to survive so badly,i've fought my entire life. But man,i am scared and anxious.

There's a high possibility i will be put on TPN,because that's what doctors wanted to do when i was in a hospital previously,but i did not have insurance back then,and my geneticist suggested it would probably be the great if they do this. That's also causing me anxiety,because i don't know if my body will tolerate it.

Someone please just tell me everything will be alright. Please. Would also be interested to hear if someone had similar situation to mine,and how you coped with it