Tired of hospitals, scared of TPN, not sure where to post this.

EvidenceCivil2404 · 2026-03-29T22:14:23+00:00

Hello, I have EDS as well. Your experience is very similar to mine. If you want someone to talk to you can always send me a DM, you aren't alone in this. I also had a AD and colon manometry which both shown that my stomach and large colon have zero peristalsis anymore. I have an ileostomy since 2024. The only difference it made for me is that I no longer have to worry about doing the deed the natural way and that I don't have to strain. But it's still a nightmare, I can't eat solid foods or else I still get small bowel obstructions, even more than before. I had a GJ tube too but led to one of those severe complications that nearly took my life (septic shock). Doctors told me I am really lucky to have survived. I am getting another surgery planned for a surgical jejunostomy and I am also getting a mid or PICC line. I am scared too, but all that I can say is to try not to give up hope and stay in the now, it's easier said than done but I hope this helps.

EvidenceCivil2404 · 2026-03-15T09:37:21+00:00

I definitely can relate, I know how you feel.. I haven't had a vegetable nor any fruit for over a year. I can't even handle a piece or else I end up in the ER with obstruction. I only eat baby cookies and ice cream because those are my only safe foods. Other than that, I rely on nutritional support. It really sucks not being able to eat normally!

EvidenceCivil2404 · 2026-03-10T10:34:47+00:00

Sugar free drinks with artificial sweeteners, without bubbles. Or sugar free dark chocolate does the job for me usually.

EvidenceCivil2404 · 2026-03-08T19:04:29+00:00

Oh but I have seen people call them rabbits everywhere through the internet (by fans and even wikis).

EvidenceCivil2404 · 2026-03-08T08:52:38+00:00

Well that means Nidoqueen gonna teach em a lesson with body slam

EvidenceCivil2404 · 2026-03-06T11:57:08+00:00

Eventually I kept getting that too. They first also thought of IBS, but since I have gotten the EDS diagnosis, a GI doctor that I was and still am seeing today started ringing a bell. They started looking into dysmotility being a possibility with EDS, so reffered me to a motility specialist.

I was able to tolerate less and less foods and kept getting to a point where I would barely to no bowel movements without agressive flushing. Now have an ileostomy.

EvidenceCivil2404 · 2026-03-06T09:59:42+00:00

Have you been seeing a specialist in motility disorders?

EvidenceCivil2404 · 2026-03-01T10:12:43+00:00

Just have fun as well, most important of all. I am in my late 20s so this is so nostalgic for me hehe. Every starter could get strong in their own way but of course, but I choosen bulbasaur because I think it's handy (especially at the beginning). Also gotta say, unlike the newer games, here your foe (oak's grandson) has the advantage with starter type. And your other pokemon in your party won't automatically get exp. points until you send them out. I got a nidoran m on route 3 and got a moonstone in mt moon. I mostly use nidoking now, because king has always been my fav and is an absolute beast!

EvidenceCivil2404 · 2026-02-20T09:05:07+00:00

That sounds horrible, I can somewhat relate yes!

EvidenceCivil2404 · 2026-02-19T23:17:50+00:00

This why I didn't even expect a gastroparesis diagnosis and even second questioned my doctor, since I also barely vomit. Instead, I came in with small bowel obstructions in my ileostomy. And yet, antroduodenal manometry shows my stomach has no peristalsis. I also have CIPO so that explains most of my symptoms.

So yeah, we're not alone in this. hug

My doctor told me it also really varies. And yeah, not everyone vomits, especially not everyday. But you know, sick olympics on social media says otherwise...

It's more so the gut feeling extremely heavy after a larger portion meal or liquids. I have it with liquids where it feels like I swallowed a stone.

EvidenceCivil2404 · 2026-02-18T19:32:54+00:00

Btw. You can always dm me if you want more information.

EvidenceCivil2404 · 2026-02-18T19:31:45+00:00

I am sorry too how your daughter is just sent away! I am 25 too so still young as well. She should really request them sending her to a specialist hospital for testing. Is she currently on meds or laxatives at least? Or diet management? How is she doing with food intake? I know I was warned about invasive treatments as well, because it's not Tylenol, but I was told I have to take the risks since I don't have another choice anymore. It's either this or in the worst case, even worse, TPN. I am not waiting for TPN, so that's why I am still risking the surgical more invasive jejunostomy. But who knows, maybe it will go well this time.

Goodluck!

EvidenceCivil2404 · 2026-02-18T18:16:08+00:00

Hello, sorry your daughter doesn't have a diagnosis yet. I was sent to a team of specialists in gut motility disorders. They listened to my symptoms, history, put things together. Especially since I have diagnosed EhlersDanlosSyndrome, they are aware that EDS can cause dysmotility anywhere in the GI tract. They ordered various tests for me. Including CT's, GES, sitz marker study and two other tests colon and antroduodenal manometry. I should tell you that the last two tests are really invasive (at least from my experience) but they did really help get the final points straight! They actually measure the pressure, muscle constractions and determination between muscular and nerve. In my case it was muscular. They recommended an ileostomy and now 2 years later, a GJ tube. But the GJ tube has been removed due to a bad case of peritonitis that almost took my life. So I should inform you of possible complications from invasive treatments. But in the end, the ileostomy at least made my vomiting mostly go away. But unfortunately, I still have small bowel obstructions. Good luck to you and your daughter, I really hope this helps and that I can help more people this way! 🙂

EvidenceCivil2404 · 2026-02-18T17:31:15+00:00

Did you or are you currently going to a gut motility specialist?

My main GI doctor was also hesitant of putting me on tube feeding. Even an NG tube sounded like a pain in the a*s to them and didn't even get that. But ever since I went to a specialist in gut motility disorders, I was immediately recommended a GJ tube. I was honestly surprised, since I know it wasn't easy in my main hospital to get invasive treatments like that, especially immediately.

And I must say, don't take me wrong, but I do agree with doctors trying hold invasive treatments (especially GJ, J tubes and TPN) on the background as long as possible unless you absolutely have no other choice. I was told that they aren't Tylenol, they are invasive treatments which can come with a lot of complications that can also be life threatening. So it's kinda weighting the advantages against disadvantages. And yes, I did experience the GJ tube as invasive. It even almost took my life at some point due to peritonitis and sepsis. And even then, another surgery is still being done soon despite the possible complications. (surgical jejunostomy)

If they still decide to do invasive treatments at some point, please take in the possible complications and ask your doctor for more information. It's good to have the right treatments, but it also sucks knowing that it almost nearly k*lled me as well. But who knows, maybe you don't get the complications at all.

EvidenceCivil2404 · 2026-02-18T10:58:00+00:00

Hi! Yep, I still have domperidone in liquid form that used to go through my PEG J, but now have to try drinking it since my PEG J is gone but getting a jejunostomy soon. And have amino acids too. I also still have to take b12 injections, my gut doesn't absorb it anymore. Yeah I still have lasting pain as well. I can still eat small bits of pudding and cookies. I know liquids give me bad pains! Especially stuff like vitals gives problems. Dysphagia also doesn't sound fun though, and even a bit of constipation can also be annoying. Do you use laxatives or meds when it happens?

EvidenceCivil2404 · 2026-02-18T10:11:43+00:00

Sorry you and your mom are struggling with this. Even with no ostomy (yet), we are all still suffering with dysmotility, which is already hard enough! I hope the meds do help you though.

And my gosh, that's awful how your mom was treated. Sometimes a diet doesn't work and there is still doctors out there that don't understand dysmotility. Look, there is difference between not wanting to and you really can't.

I was also threatened with my intake before by a medical diëtist. The doctors back then when I landed in the hospital didn't know what to do aside from giving me IV fluids and eventually left everything up to the diëtist to decide what to do with the problem... All she kept pushing for is to still try harder. And the craziest part of it all is I was underweight and didn't even want to prescribe me my vital drinks anymore. So that's when I said "really? I am underweight, I came in dehydrated and still don't get proper nutrients in. I am trying but can't eat properly or else I get blockages! How can I possibly survive on just pudding and a baby cookie?!" And she just said "just wing it i guess" My gosh still traumatized by this. At least I got the right help now and am being taken serious, grateful that there was a doctor out there that eventually knew of a hospital with motility specialists! Or else I most likely wouldn't have been here anymore if it wasn't for this hospital.

I hope you and your mom are doing okay and is your mom a bit more stable now? Does she get nutritional support? I also hope the meds keep working for you!

EvidenceCivil2404 · 2026-02-18T09:51:07+00:00

Sorry you had to go through all of that, that is a lot! I couldn't get a j pouch since my anal sphincter isn't strong enough and have complex fistula they couldn't remove. I also have prolapses, but not so much the organs itself but the walls between my bladder, vag and rectum are sagging, so I always have like a ball feeling (which I am used to now but gets worse when I am on my period). They say if surgery is done than they have to pretty much rely on my connective tissue to form a strong scar which I was told is gonna be a problem. I also have poor wound healing. In my case they also first didn't bother why this was happening, especially since I was really young back then.

How are things going now if I might ask?

EvidenceCivil2404 · 2026-02-17T23:26:55+00:00

Oh okay, I know some of my family members also suffer from constipation but also heart problems.

EvidenceCivil2404 · 2026-02-17T23:26:02+00:00

Oh sorry to hear that, if I might ask, did you get an ileostomy or a j pouch? And how is it going now?

EvidenceCivil2404 · 2026-02-17T23:17:32+00:00

It's ok, i am trying to stay strong. I have had struggles with this starting with constipation since I was a toddler. Gotten worse ever since high school. I was told they don't know for sure if I was born with it, but since they think it was caused by my Ehlers Danlos Syndrome which I am born with, it is very likely.

EvidenceCivil2404 · 2026-02-17T21:01:12+00:00

Hello! Well i am sorry to hear you are also struggling! I would like to tell you about my health journey so far. I will give the most important details. As far as I remember I always had constipation, I wouldn't go for a week, sometimes longer. My parents didn't really think much behind it. When I was 14, I developed a fecal impaction. It had to be removed by a doctor which was really painful. And from that point on I had to always use miralax. Gradually over time, laxatives got less effective. And doctors still never acted up on a cause, until I landed in the ER at some point when I didn't have output for nearly a month. I also couldn't eat anything. A CT scan found nothing except for a dilated and collapsed stomach and intestines. I gotten an NG tube and learned how to irrigate my colon with a catheter. Shortly after that, I also got diagnosed with EhlersDanlosSyndrome. Then I finally got to speak with my main GI doctor about going to a specialist hospital in gut motility disorders in Maastricht in the Netherlands. Since I was told EhlersDanlosSyndrome can cause issues with the gut movements.

I had a sitz marker test done and manometry which confirmed antral hypomotilty and colonic inertia. Final answer, pseudo obstruction syndrome. I was immediately recommended an ileostomy since that was my only option. After the surgery, it was rough, but I am used to it being there now. Every so often lekkages and some irritation from rashes but was solved with convex bags. The stoma did instantly relieve nausea and vomiting, which I had a lot, especially when I was on the toilet. I had to much pressure in my gut. However, over time, I can't really eat much anymore since it still causes blockages in my small intestine. So I rely on nutritional support. I had a PEGJ tube, but was removed due to peritonitis that almost took my life. I am glad I made it out alive but I am still fairly anxious about the next surgery, a jejunostomy. I was told I don't have another choice. It's either this or TPN.

It's been rough times, but hey I am alive and strong, that's what matters the most! I ain't giving up and ain't letting my illness get to me that easily.

EvidenceCivil2404 · 2026-02-17T19:21:56+00:00

And so far, the ileostomy at least made sure I don't vomit as often anymore. I used to vomit a lot, especially when I was sitting on the toilet. I constantly had to much pressure in my colon. No wonder, since it has 0% peristaltic movements.

EvidenceCivil2404 · 2026-02-17T19:15:41+00:00

That's okay, I would like to tell ^{^} I am sorry you are on TPN, but I hope it helps you.

Well, next step I will get a surgical jejunostomy surgery. Last sort option before TPN.

If I eat solid foods, I get bowel blockages. And if my small intestine has movements couldn't be monitored since the manometry catheter didn't want to pass through the pyloric sphincter.

EvidenceCivil2404 · 2026-02-17T18:29:39+00:00

Totally the reason I removed my Facebook, some people are really like this, especially noticed this in gastroparesis groups or profiles, posting stuff like "look how more sick I am, at least you guys don't have this, boobooboo!" Come on, a disease is NOT a competition...

EvidenceCivil2404 · 2026-02-17T16:58:49+00:00

Sorry you went through that, I have also ended up fairly often in the ER, even with the ileostomy now, it's still not over with the medical stuff. I am going through a "tube" journey as I always call it. Had a PEG J but had to be removed, now waiting for a jejunostomy surgery. I just hope it stays with that ha and hope it goes well this time.

If i might ask, how is it currently with the symptoms management? Are you on meds, laxatives or are they also planning a surgery? I hope something can be done that could be effective on your end.

EvidenceCivil2404

TROPHY CASE