u/Cheburoll

I am 21F,i have EDS, and a lot of other conditions,of which my GI problems are the most severe. I have severe dysmotility in my colon,gastroparesis, visceroptosis (my colon fell into my pelvic area), and redundant colon. Because of these issues the only way i can go to the bathroom is by using a large volume water enema,no medications work for me. No prokinetics,no laxatives,i tried pretty much everything. And not only i am unable to have a BM i can't pass gas naturally AT ALL. The only way to pass gas for me is to massage my abdomen with my elbows and fists.

I will have a j tube surgery on 26th this month,because i am very underweight due to gastroparesis. At first i was quite excited,but now that i read about other people's experiences i am terrified. If it's going to be very painful,how am i ever going to pass gas? How will i guide water out when i do an enema? I am so scared. Does anyone else have a similar experience to mine? If so,how did you deal with it? And what is your experience with j tube in general?

This is more of a vent,i guess. Maybe someone will relate.

I have EDS, and have tons of bowel issues. Severe slow motility constipation, redundant colon, visceroptosis (my colon fell in my pelvis), gastroparesis,etc.

I've tried probably every non surgical option,i've taken so many different laxatives, prokinetics, and nothing helped me. My intestines just don't move at all. I was taking prucalopride recently,but it only caused severe bloating (and i am already ALWAYS bloated,but it still managed to make me feel even worse.) My doctor is refusing to even consider an ostomy,but she also doesn't understand much about my conditions,because she is not a motility specialist,and has seen only one person with EDS besides me. Instead she prescribed me the highest dose of Linzess,290 mcg. I took it today,and it was immediately a nightmare. I've always had very bad experiences with osmotic laxatives,i get so much water in my intestines, but no way to get rid of the water,i haven't had urges to go to the bathroom for many many years now. But this is somehow even worse, i'm sorry for the details,but the water just started leaking out of my ass,and i didn't even notice at first. I am now bound to the toilet,i am very dehydrated (i weight only 43 kg due to my gastroparesis),if i drink water it will immediately start pouring out of my ass,mixed with bile(i think?),because it is very acidic,and burns my ass. I was crying because it hurts so much,i can't even wipe.

I wish doctors would stop torturing me with meds. I want an ostomy,and yes,i understand that it comes with issues as well,i know there are many risks. But what's the other choice? Just continue being in sever epain and discomfort literally ALL of the time? Or at least have a chance for relief? I already was offered a stoma back in my home country,by 2 best colon surgeons in the country,but they decided not to do it due to not knowing what complications i can have due to my EDS. I don't know...i am so tired. I am still young but it feels like my life is over. I can't go out,do anything. Just suffer 24/7.

Hi, i am 21F, and i have a very strange situation,and i want to find people who have a similar situation

I was born very sick, and doctors couldn't understand what was wrong with me. I was diagnosed with kEDS based only on clinical criteria in 2017 (because back then there was no genetic testing available in my country,Ukraine.) Then in 2024 i did a genetic panel for EDS that did not show anything, hovewer based on my severe symptoms my geneticist suggested i should do a whole genome sequencing. Fast forward to 2026,i am now in Germany,and here i did Whole Genome Sequencing in Leipzig University Clinic. It did not show any mutations,but the committee of doctors in Leipzig University Clinic think that i have a possibly undiscovered connective tissue disorder/subtype of EDS extremely similar to kEDS, and that they just don't know the gene for it yet. They don't think it looks like hEDS (though i am not saying it can't be hEDS)

I will list my other conditions and symptoms below:

• joint hypermobility with subluxation, marfanoid habitus, congenital muscle hypotonia, congenital bilateral hips dislocation and bilateral hip dysplasia

• POTS

• severe dysmotility of entire GI tract (gastroparesis, slow motility constipation resistant to all medication, GERD)

• dolichocolon (redundant colon), visceroptosis

• neurogenic bladder

• high level myopia, astigmatism, lazy eye, strabismus, blue sclerae, retinal angiopathy

• B12-folic acid deficit anemia, hyperhomocysteinemia, folate cycle mutations (MTR 2756 A>G, MTHFR 677 C<T, MTRR 66 A>G)

• Osteoarthritis, Osteoporosis (mutation in COL1A1), planovalgus feet deformity, pectus excavatum, stage 3 early onset kyphoscoliosis

• MCAS, atopic dermatitis

• mitral valve prolapse, trombophilia

• chronic kidney disease stage 2

I am 21F, and i have a very strange situation,and i want to find people who have similar situation

I was born very sick, and doctors couldn't understand what was wrong with me. I was diagnosed with kEDS based only on clinical criteria in 2017 (because back then there was no genetic testing available in my country.) Then in 2024 i did a genetic panel for EDS that did not show anything,hovewer based on my severe symptoms my geneticist suggested i should do a whole genome sequencing. Fast forward to 2026,i am now in Germany,and here i did Whole Genome Sequencing in Leipzig University Clinic. It did not show any mutations,but the committee of doctors in Leipzig University Clinic think that i have a possibly undiscovered connective tissue disorder extremely similar to kEDS, and that they just don't know the gene for it yet. They don't think it looks like hEDS. I wonder rand there are any people who have similar situation as me

I will list my other conditions and symptoms below:

- joint hypermobility with subluxation, marfanoid habitus, congenital muscle hypotonia, congenital bilateral hips dislocation

-POTS

-severe dysmotility of entire GI tract (gastroparesis, slow motility constipation, GERD)

- dolichocolon (redundant colon), visceroptosis

- neurogenic bladder

- high level myopia, astigmatism, lazy eye, strabismus, blue sclerae

- B12-folic acid deficit anemia, hyperhomocysteinemia, folate cycle mutations (MTHFR 677 C<T, MTRR 66 A>G)

- Osteoarthritis, planovalgus feet deformity, pectus excavatum, stage 3 early onset kyphoscoliosis

- MCAS, atopic dermatitis

- mitral valve prolapse, trombophilia

- chronic kidney disease stage 2

I might be forgetting something, i might add something later EDIT: added more symptoms i have

Please,if you have EDS and have/had an ostomy, tell me honestly about your experience,especially if you are from Germany.

I am 21F, i have had problems since birth. I am diagnosed with hEDS,i have severe slow motility constipation, with colon ptosis (my colon fell into my pelvis area), and severe redundant colon, gastoparesis,pelvic floor dyssynergia, etc. Everything confirmed with tests (sitz marker test, irrigoscopy, defecography,etc.) I tried tons of medications and different treatments,but everything failed. I am now on my last resort–prucalopride. But it doesn't do anything for me,only causes horrible bloating. I am beyond tired,and i am in despair. The only thing somewhat helping now are big water enemas,but even they don't work as well,and cause me pain.

In Ukraine i was seeing 2 best colon surgeons in the entire country, and they wanted to do a total colectomy with ileostomy, but only refused because they have never had a patient with Ehlers-Danlos before. I want a stoma so badly,because my quality of life is horrible. I lost too much weight, i am constantly in pain,constantly bloated (can't pass gas at all), and it's getting only worse. When i had sitz marker test one half of markers was in my ascending colon,the other stuck in transverse. I am a ukrainian refugee,and now i am in Germany, and i get treated horribly,doctors all speak to me like i am making this all up and is completely insane,all because i previously was diagnosed with depression. Doctors say they can only give me meds,but won't do the surgery. I want to see a neurogastroenterologist,but it's insanely hard to find one here.

I can't live like this anymore. I understand that surgery comes with many risks, but i just want to have even a chance to get my life back. Not looking for medical advice. If there's anyone here with EDS please tell me about your experience with ostomy,both positive and negative sides,especially if you are in Germany.

Please,if you have EDS and have/had an ostomy, tell me honestly about your experience,especially if you are from Germany.

I am 21F, hEDS (had Whole Genome Sequencing that yielded no results.) with severe slow motility constipation, with colon ptosis (my colon fell into my pelvis area), and severe redundant colon, gastoparesis,etc. I tried tons of medications and different treatments,but everything failed. I am now on my last resort–prucalopride. But it doesn't do anything for me,only causes horrible bloating. I am beyond tired,and i am in despair.

I want a stoma so badly,because my quality of life is horrible. I lost too much weight, i am constantly in pain,constantly bloated (can't pass gas at all), and it's getting only worse. I am a ukrainian refugee,and now i am in Germany, and i get treated horribly,they all speak to me like i am making this all up and is completely insane,all because i previously was diagnosed with depression. Doctors say they can only give me meds,but won't do the surgery. I want to see a neurogastroenterologist,but it's insanely hard to find one here.

I can't live like this anymore. I understand that surgery comes with many risks,but i just want to have even a chance to get my life back. I am NOT looking for medical advice,i want to read other people's similar experiences with constipation,and experiences with an ostomy.

TW for weight mention and suicidal ideation.

21F. I have Ehlers-Danlos syndrome, dolichocolon (redundant colon), colon ptosis (my colon is lying entirely in my pelvis area), severe slow motility constipation, gastroparesis, neurogenic bladder, malnutrition and critically low weight (BMI 13) due to these issues.(+ 20 other diagnoses related to my EDS.) This will be a very long post,i have very complex issues, and i want to hear experiences of people with similarly complex issues.

My main symptoms are: severe bloating (with inability to pass gas), complete inability to have a bowel movement, mild abdominal pain, early satiety, nausea,vomiting, severe reflux, constant fatigue. My colon is pressing on my bladder, causing non stop urge to urinate 27/4.

All of the diagnostic tests, medications, and answers to the questions are at the bottom of this post.

I have had constipation issues my whole life,but they were mild until 2019 when i was no longer able to go naturally anymore at all, and had to manually evacuate stool myself every time. In 2024 i was no longer able to even do that. Was completely constipated for 9 days,the only thing that could help me was a big water enema.

Since then i am no longer able to have a bowel movement without big water enemas at all. I am ukrainian,but had to go to Germany due to the fact i exhausted all treatment options there (and other obvious thing). In November of 2024 i was at the main hospital specializing in colon issues in the country,and both of my doctors were the best colon surgeons in the entire country. They wanted to remove my colon,and put an ileostomy instead, hovewer they have never seen a patient with Ehlers-Danlos before,so they refused to perform the surgery out of fear.

Now in Germany i've already been in Leipzig University Clinic, where i've spent some time inpatient, had a NJ tube for gastroparesis that failed due to constant tube kinking and formula intolerance. Was prescribed metoclopramide, domperidone, mirtazapine and prucalopride. I take metoclopramide 10mg 3x a day, domperidone 10mg 2x a day, mirtazapine before bed 7.5mg and prucalopride 2 mg before bed. My doctors refuse to do a colectomy. They said prucalopride is the only thing they can offer,and if it doesn't work then it's basically over. But since i started taking it things have gotten worse. I usually have a water enema every night before sleep,because otherwise i will not be able to sleep due to severe bloating and colon pressing on my bladder, but i tried to stop doing them because i understand that prucalopride would not work on empty bowels,but of my god. The bloating doesn't stop. I massage my abdomen to let the gas out,but it doesn't stop. And now i have even more frequent urination. I can't sleep anymore. Even if i eat a tiny bite of anything the gas won't stop building up ever. What do i do? I tried pushing through it, but it gets way too uncomfortable and even painful. I still don't have bowel movements. And nothing helps. I am stuck in the cycle of doing enemas every day. I don't want to live like this,i am only 21 years old,those were supposed to be my best years. But instead i am rotting away slowly. I can't even go outside anymore. (I have tons of other issues due to EDS,which makes it worse.) I am so desperate,i want a surgery,but my doctors are against it. My life feels like it's over. I understand all the risks that come with surgery,but at this point it feels like there's no hope anyway.

Below are all of the diagnostic tests, medications, and answers to the questions (from ConatipationAdvice sub):

"Do you have the urge to go, but you cannot? Or do you have zero urge to go?" I haven't had ANY urge to go at all for 7 years.

"Do you have alternating diarrhea and constipation, or just constipation?"

I am completely unable to empty my bowels without a water enema. And even then it is very difficult. Before that i don't remember having anything other than just constipation.

"Do you have nausea, vomiting, acid reflux, difficulty swallowing, or early satiety (getting full really early into a meal)?" Yes. I am diagnosed with gastroparesis.

"Have you had this issue since childhood, or did it begin in teen years/adulthood/after a major life event (surgery? divorce? car accident? mauled by bears?)" Since childhood,but it has become more severe in 2019,and then in 2024 for no reason.

"Did you in the past or do you currently take any medications that could damage your intestines?" I did take antidepressants and antipsychotics,hovewer it was after my issues have already gotten worse. (I was taking buspirone,lamotrigine, pregabalin, quetiapine, zoloft. Currently taking mirtazapine for gastroparesis.)

What tests i did:

-irrigoscopy (showed severe dolichocolon and dolichosigma)

-defecography (pelvic floor dyssynergia)

-barium passage study (2024) and sitz marker test (2026) (Severe slow motility constipation, with no bowel movements during both tests, that being around 8 days. Half of sitz markers were in my ascending colon,the other were in transverse colon.)

-gastric emptying study (moderate severity of gastroparesis)

-endoscopy (GERD)

No colonoscopy because doctors say it's too risky to perform on me.

What i already tried:

-stimulant and osmotic laxatives (none of them have any effect on me. Those include: movicol, mag citrate, macrogol, lactulose, dulcolax, glycerin suppositories, glycerin enemas, psyllium husk, LegkoLax, EasyDo (herbal laxative that helped the longest,but it stopped too.)

-changing diet. Fiber kills me,it makes everything worse,and turns into cement in my colon. And my diet was already limited due to my many food allergies and intolerances. I can't have gluten,lactose,high FODMAP food,high fiber food. I tried fiber supplements like Loclo,no success either.

-prokinetics and similar (probiolog transit, Itopride hydrochloride, zafakol IQ, currently taking prucalopride, metoclopramide and domperidone without success.)

I may be forgetting something,since there's so many things. I might edit and add things later,if i remember.

TW for weight mention and suicidal ideation.

21F. I have hypermobile Ehlers-Danlos syndrome (whole genome sequencing test came back negative to everything), dolichocolon (redundant colon), colon ptosis (my colon is lying entirely in my pelvis area), severe slow motility constipation, gastroparesis, neurogenic bladder, malnutrition and critically low weight (BMI 13) due to these issues.(+ 20 other diagnoses related to my EDS.) This will be a very long post,i have very complex issues, and i want to hear experiences of people with similarly complex issues.

My main symptoms are: severe bloating (with inability to pass gas), complete inability to have a bowel movement, mild abdominal pain, early satiety, nausea,vomiting, severe reflux, constant fatigue. My colon is pressing on my bladder, causing non stop urge to urinate 27/4.

All of the diagnostic tests, medications, and answers to the questions are at the bottom of this post.

I have had constipation issues my whole life,but they were mild until 2019 when i was no longer able to go naturally anymore at all, and had to manually evacuate stool myself every time. In 2024 i was no longer able to even do that. Was completely constipated for 9 days,the only thing that could help me was a big water enema.

Since then i am no longer able to have a bowel movement without big water enemas at all. I am ukrainian,but had to go to Germany due to the fact i exhausted all treatment options there (and other obvious thing). In November of 2024 i was at the main hospital specializing in colon issues in the country,and both of my doctors were the best colon surgeons in the entire country. They wanted to remove my colon,and put an ileostomy instead, hovewer they have never seen a patient with Ehlers-Danlos before,so they refused to perform the surgery out of fear.

Now in Germany i've already been in Leipzig University Clinic, where i've spent some time inpatient, had a NJ tube for gastroparesis that failed due to constant tube kinking and formula intolerance. Was prescribed metoclopramide, domperidone, mirtazapine and prucalopride. I take metoclopramide 10mg 3x a day, domperidone 10mg 2x a day, mirtazapine before bed 7.5mg and prucalopride 2 mg before bed. My doctors refuse to do a colectomy. They said prucalopride is the only thing they can offer,and if it doesn't work then it's basically over. But since i started taking it things have gotten worse. I usually have a water enema every night before sleep,because otherwise i will not be able to sleep due to severe bloating and colon pressing on my bladder, but i tried to stop doing them because i understand that prucalopride would not work on empty bowels,but of my god. The bloating doesn't stop. I massage my abdomen to let the gas out,but it doesn't stop. And now i have even more frequent urination. I can't sleep anymore. Even if i eat a tiny bite of anything the gas won't stop building up ever. What do i do? I tried pushing through it, but it gets way too uncomfortable and even painful. I still don't have bowel movements. And nothing helps. I am stuck in the cycle of doing enemas every day. I don't want to live like this,i am only 21 years old,those were supposed to be my best years. But instead i am rotting away slowly. I can't even go outside anymore. (I have tons of other issues due to EDS,which makes it worse.) I am so desperate,i want a surgery,but my doctors are against it. My life feels like it's over. I understand all the risks that come with surgery,but at this point it feels like there's no hope anyway.

Below are all of the diagnostic tests, medications, and answers to the questions (from ConatipationAdvice sub):

"Do you have the urge to go, but you cannot? Or do you have zero urge to go?" I haven't had ANY urge to go at all for 7 years.

"Do you have alternating diarrhea and constipation, or just constipation?"

I am completely unable to empty my bowels without a water enema. And even then it is very difficult. Before that i don't remember having anything other than just constipation.

"Do you have nausea, vomiting, acid reflux, difficulty swallowing, or early satiety (getting full really early into a meal)?" Yes. I am diagnosed with gastroparesis.

"Have you had this issue since childhood, or did it begin in teen years/adulthood/after a major life event (surgery? divorce? car accident? mauled by bears?)" Since childhood,but it has become more severe in 2019,and then in 2024 for no reason.

"Did you in the past or do you currently take any medications that could damage your intestines?" I did take antidepressants and antipsychotics,hovewer it was after my issues have already gotten worse. (I was taking buspirone,lamotrigine, pregabalin, quetiapine, zoloft. Currently taking mirtazapine for gastroparesis.)

What tests i did:

\-irrigoscopy (showed severe dolichocolon and dolichosigma)

\-defecography (pelvic floor dyssynergia)

\-barium passage study (2024) and sitz marker test (2026) (Severe slow motility constipation, with no bowel movements during both tests, that being around 8 days. Half of sitz markers were in my ascending colon,the other were in transverse colon.)

\-gastric emptying study (moderate severity of gastroparesis)

\-endoscopy (GERD)

No colonoscopy because doctors say it's too risky to perform on me.

What i already tried:

\-stimulant and osmotic laxatives (none of them have any effect on me. Those include: movicol, mag citrate, macrogol, lactulose, dulcolax, glycerin suppositories, glycerin enemas, psyllium husk, LegkoLax, EasyDo (herbal laxative that helped the longest,but it stopped too.)

\-changing diet. Fiber kills me,it makes everything worse,and turns into cement in my colon. And my diet was already limited due to my many food allergies and intolerances. I can't have gluten,lactose,high FODMAP food,high fiber food. I tried fiber supplements like Loclo,no success either.

\-prokinetics and similar (probiolog transit, Itopride hydrochloride, zafakol IQ, currently taking prucalopride, metoclopramide and domperidone without success.)

I may be forgetting something,since there's so many things. I might edit and add things later,if i remember.

21F. I have Ehlers-Danlos syndrome, dolichocolon (redundant colon), colon ptosis (my colon is lying entirely in my pelvis area), severe slow motility constipation, gastroparesis, neurogenic bladder, malnutrition and critically low weight (BMI 13) due to these issues.(+ 20 other diagnoses related to my EDS.) This will be a very long post,i have very complex issues, and i want to hear experiences of people with similarly complex issues.

My main symptoms are: severe bloating (with inability to pass gas), complete inability to have a bowel movement, mild abdominal pain, early satiety, nausea,vomiting, severe reflux, constant fatigue. My colon is pressing on my bladder, causing non stop urge to urinate 27/4.

All of the diagnostic tests, medications, and answers to the questions are at the bottom of this post.

I have had constipation issues my whole life,but they were mild until 2019 when i was no longer able to go naturally anymore at all, and had to manually evacuate stool myself every time. In 2024 i was no longer able to even do that. Was completely constipated for 9 days,the only thing that could help me was a big water enema.

Since then i am no longer able to have a bowel movement without big water enemas at all. I am ukrainian,but had to go to Germany due to the fact i exhausted all treatment options there (and other obvious thing). In November of 2024 i was at the main hospital specializing in colon issues in the country,and both of my doctors were the best colon surgeons in the entire country. They wanted to remove my colon,and put an ileostomy instead, hovewer they have never seen a patient with Ehlers-Danlos before,so they refused to perform the surgery out of fear.

Now in Germany i've already been in Leipzig University Clinic, where i've spent some time inpatient, had a NJ tube for gastroparesis that failed due to constant tube kinking and formula intolerance. Was prescribed metoclopramide, domperidone, mirtazapine and prucalopride. I take metoclopramide 10mg 3x a day, domperidone 10mg 2x a day, mirtazapine before bed 7.5mg and prucalopride 2 mg before bed. My doctors refuse to do a colectomy. They said prucalopride is the only thing they can offer,and if it doesn't work then it's basically over. But since i started taking it things have gotten worse. I usually have a water enema every night before sleep,because otherwise i will not be able to sleep due to severe bloating and colon pressing on my bladder, but i tried to stop doing them because i understand that prucalopride would not work on empty bowels,but of my god. The bloating doesn't stop. I massage my abdomen to let the gas out,but it doesn't stop. And now i have even more frequent urination. I can't sleep anymore. Even if i eat a tiny bite of anything the gas won't stop building up ever. What do i do? I tried pushing through it, but it gets way too uncomfortable and even painful. I still don't have bowel movements. And nothing helps. I am stuck in the cycle of doing enemas every day. I don't want to live like this,i am only 21 years old,those were supposed to be my best years. But instead i am rotting away slowly. I can't even go outside anymore. (I have tons of other issues due to EDS,which makes it worse.) I am so desperate,i want a surgery,but my doctors are against it. My life feels like it's over. I understand all the risks that come with surgery,but at this point it feels like there's no hope anyway.

Below are all of the diagnostic tests, medications, and answers to the questions :

"Do you have the urge to go, but you cannot? Or do you have zero urge to go?" I haven't had ANY urge to go at all for 7 years.

"Do you have alternating diarrhea and constipation, or just constipation?"

I am completely unable to empty my bowels without a water enema. And even then it is very difficult. Before that i don't remember having anything other than just constipation.

"Do you have nausea, vomiting, acid reflux, difficulty swallowing, or early satiety (getting full really early into a meal)?" Yes. I am diagnosed with gastroparesis.

"Have you had this issue since childhood, or did it begin in teen years/adulthood/after a major life event (surgery? divorce? car accident? mauled by bears?)" Since childhood,but it has become more severe in 2019,and then in 2024 for no reason.

"Did you in the past or do you currently take any medications that could damage your intestines?" I did take antidepressants and antipsychotics,hovewer it was after my issues have already gotten worse. (I was taking buspirone,lamotrigine, pregabalin, quetiapine, zoloft. Currently taking mirtazapine for gastroparesis.)

"Did you suffer sexual abuse as a child?" No.

What tests i did:

-irrigoscopy (showed severe dolichocolon and dolichosigma)

-defecography (pelvic floor dyssynergia)

-barium passage study (2024) and sitz marker test (2026) (Severe slow motility constipation, with no bowel movements during both tests, that being around 8 days. Half of sitz markers were in my ascending colon,the other were in transverse colon.)

-gastric emptying study (moderate severity of gastroparesis)

-endoscopy (GERD)

No colonoscopy because doctors say it's too risky to perform on me.

What i already tried:

-stimulant and osmotic laxatives (none of them have any effect on me. Those include: movicol, mag citrate, macrogol, lactulose, dulcolax, glycerin suppositories, glycerin enemas, psyllium husk, LegkoLax, EasyDo (herbal laxative that helped the longest,but it stopped too.)

-changing diet. Fiber kills me,it makes everything worse,and turns into cement in my colon. And my diet was already limited due to my many food allergies and intolerances. I can't have gluten,lactose,high FODMAP food,high fiber food. I tried fiber supplements like Loclo,no success either.

-prokinetics and similar (probiolog transit, Itopride hydrochloride, zafakol IQ, currently taking prucalopride, metoclopramide and domperidone without success.)

I may be forgetting something,since there's so many things. I might edit and add things later,if i remember.

21F, i have EDS, POTS, and countless other conditions,of which the worst are gastrointestinal issues (severe constipation with slow motility, visceroptosis, redundant colon,and of course gastroparesis.) TW for mentions of suicidal ideation.

Recently i got prescribed Mirtazapine for weight gain and gastroparesis after staying in the hospital for some time,and it has been a nightmare. I know that Mirtazapine often actually helps people with gastroparesis,but it takes time. I started at 7.5mg, and after 5 days i switched to 15mg as recommended by my doctor,and the side effects are brutal,and they sucked out the last bits of joy i had in my life. I've been taking it for 12 days in total.

The sedating effects are HORRIBLE. I am extremely drowsy and fatigued 24/7, i can't even stand up,i am constantly in bed. I am feeling extremely weak,i can't even lift a cup of water. If i try to stand up i often start fainting. I used to at least draw,and it was the last thing genuinely bringing me joy,but now i am unable to do anything. I have brain zaps all the time, which means that despite being drowsy i often end up waking up due to them.

Mirtazapine doesn't seem to help me with gastroparesis so far,i know it usually takes a couple of weeks both for the side effects to subside,and for positive effects to appear,but i genuinely don't know if i can handle taking it for any longer. People online always say to just put up with it, but i genuinely feel like i just can't anymore. I've been through so much in my life already. I've suffered my entire life,i've been practically living in the hospitals my whole life since i was born. I am already in constant pain and discomfort. I could put up with all the suffering,all the surgeries, all the painful medical procedures, medical neglect, etc.

But there comes a time when it becomes too much.

Of course i know i must talk to my doctors about it. But my appointment is a week away,i genuinely am insure if i can wait this long before i just collapse and die. I have had horrible experiences with similar sedating antidepressants before. I used to take Olanzapine and Quetiapine before and those meds almost made me kill myself,i was hallucinating and having panic attacks,and i was similarly extremely drowsy and fatigued.

Has anyone had similar experiences with Mirtazapine? If so,what you ended up doing about it?

Hi, i am 21F, diagnosed with Ehlers-Danlos syndrome, dolichocolon (redundant colon), visceroptosis, chronic constipation, and many many other things like B12 folic acid deficit anemia,POTS, neurogenic bladder,etc. + suspected gastroparesis with frequent vomiting,weight loss, GERD. Sometimes i throw up food at night that i ate in the morning.

I was in the hospital for 2 weeks,and got discharged today, but i have to do sitz marker test for a week. But there is a big issue,i am afraid to throw up the markers. Yesterday doctor gave me the capsules with markers way too late,i was supposed to take them in the morning,but took one at 2 pm. I threw up at 6pm unfortunately,and while i did not see any markers,i am so scared i threw up some,if not all of them. Today i took the capsule at 8 am,and threw up a little at 13:30. I write down the time every time it happens,to show the radiologists,but i am so scared that because of this the test will fail. I have to stop all of my constipation remedies for a week,and without them i will not have a bowel movement, like, EVER. Without them even after a month i will not have a bowel movement. So i am afraid that i'd have to go through this suffering for nothing. This test is so incredibly important for me,i suffer from constipation so much,and nothing helps. So the test failing would be devastating.

What do i even do in this situation? My doctor knows everything about my symptoms,and she was the one suspecting gastroparesis, but it all feels really not thought out well? Also,thought i should add that am in Germany.

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.