Visceroptosis, Hypermobility of ligaments/joints

Thank you Looloo, that's lovely to 'see' you again!

The problem with enteroptosis or visceroptosis is, that docs nowadays do completely dismiss this anatomical speciality since it mostly seems to cause no problem.

But what fits for 'most', doesn't fit for all

and I really struggle being heard.

The articles (incl wikipedia source, most on ncbi) are all about 100 years old, because no one cares today, hence I was interested if someone had this condition personally or friends,

had problems due to it and some solution (like special muscle training excercises...one has to be careful due to not causing more damage, or corsetts), because since it is dismissed, there is no treatment to trial offered. One has to do all the digging themselves.

Or if anyone knows a doc, who actually cares about this anatomy.

I find it awfully logical, that a 'sinking' of guts can cause nerves or blood vessels being pressed on.

I found one recent case study and that young woman sounds exactly like my daughter (ascending colon constipation, gastroparesis, hypermobility, striae, abdominal pain, small intestine mainly in pelvis, transverse colon somewhere hanging down),

just this woman definitely had hypermobile joints, a form of Ehlers-Danlos (type III) sundrome.

Since my daughter can bend her thumb backwards, has pain in her hip and clicks in her hips, but is otherwise not hypermobile obviously, she is dismissed and not checked for Ehlers-Danlos (type III cannot be found genetically, but vascular type can).

Anyway it was speculated if that woman's visceroptosis (was more enteroptosis) was connected to her connective tissue disease since this anatomical speciality was not often seen in this often seen Ehlers-Danlos patients. Could be just a coincidence.

....

Unfortunately that woman got a quite radical operation (I don't understand why the splen flexure of colon is always taken out, why the transverse colon cannot just be shortened and both flexures kept in place? One risks permanent diarrhea if colon gets too shortened),

BUT it freed her from her pain instantly after operation!!!

Voila, all of a sudden, a physically fallen down gut was definitely reason for the pain!

(Patient was not healed from her gastroparesis, as connective tissue diseases do cause gastroparesis, too. This poor woman had to get iv food and tube. My daughter has it, but a mild version luckily, which makes sense since she has no full blown Ehlers-Danlos III, but mildly it seems).

I try to find someone, who has a transverse colon fallen down, small bowel loops that crunch in the pelvis

and has symptoms and if a solution, help was found.

The medical, east and west, are not doing anything.

We do our part with keeping stool soft, teas, transverse abdominal side muscle training (a form of pelvic floor training).

I probably should have titled this post differently because how the heck does a connective tissue problem (hypermobile joints) fit in?  Wrong post? Yes, it does, when it comes to gastroparesis and guts it seems.

Thank you so much Looloo!

I will print out following link and present to my GI on Wednesday.

I need to get things rolling, it has been a year intermittent, 7 months contiuously of pain, pain, pain. I need an MR venogram, I need them to let me finally see  a reknown colorectal surgeon who has maybe a bit more cases and experience than normal GIs.

I don't want my daughter to just get colon cut out, but if it helped, we would, but first need anything else checked (pelvic congestion syndrome), that no one has checked so far, she just wants to be painfree and go to school and meet friends again.

This is not neuropathic pain as they have put us into the 'visceral hypersensitivity' draw. Gastroparesis does not fit into her symptoms anyway. Also neuropathic meds for 3 months are not helping at all. Of course not. There is something physically wrong, I just know it. She coughs, it hurts, after a handstand the symptoms start....as soon as she was active last year, she would get sick....

Looloo, if you hear from anyone with 'elongated colon' or 'fallen down guts' and pain, please let me know.

I am a sponge trying to suck in any experience and information.

Take good care!!!!

If  i see any posts relating to elongated colon for prolapse guts i will let you know sanya(if you don't see it first).  xx

Dear Rebecca,

you are suffering a lot. Really hard to read.

We barely escaped the feeding tube by oral tube feeds, liquids, yes also the oh so bad cows' milk saved my girl from loosing more weight. Then cottage cheese and banana.

EDS is such a horrible issue as you can't do much about it than symptomatically try to relieve issues.

Some don't suffer with it, some due hugely.

EDS seems though to be prone to other issues as connective tissue sits inside us, too.

Have you been checked via ultrasound (eating something liquid, something solid), what your 3rd and 4th parts of duodenum are doing with feeds? (SMAS/Wilkie)

We had this examination done with Barium swallow

as a test for achalasia (swallowing) was done anyway (did you have achalasia test?),

which can only show really severe obvious cases of SMAS

(barium is liquid, so tends to go through at a point at least if some mm were open) and often happening reverse peristalsis being often overlooked, which is an indication for SMAS, too.

An odd peristalsis for solids was picked up in ultrasound view in my girl, mainly reverse, 20 efforts before a bite would make it through SMA/aorta clamp. It was not looking like SMAS as it did make it through swiftly once on its way.

We were told to test for Borna virus, positive, and trial Amandatine.

(Just because of having EDS, doesn't exclude other additional issues, often a combo making things even worse. Like virus infections causing slow peristalsis, or autoimmune issues like neuronal antibodies)

MALS is also possible to be seen and tested via ultrasound, you need to lie completely flat and exhale and hold, that's when the coeliac trunk (artery) would be the most compressed (compared with inhale and erect values) and show high velocity values.

Another one is CT or MRI in sagittal plane to see a cink in artery by ligament.

Is your feeding tube NG or NJ or not nasal but through skin directly into stomach/duodenum?

For people with SMAS it needs to work only with jejunal (J) version to get past that clamp.

Some say to get relief from a blown up stomach by a vent via such a tube, be it directly through skin at stomach or a broad NG tube.

So some have both, a small feeding tube and a thicker vent tube, either through nose or through skin.

TPN (solutions through vein, not into stomach/guts) is really hard, too. Locations get infected and sore, one is not free to move around or shower/bath easily, it's such a struggle just to get fed!

Wishing you all all the best.

My girl is 15 and through a lot and a huge vascular surgery looming as she (gastroparesis, slow colon transit, elongated transverse colon = constipation) has been diagnosed now with vascular compressions like MALS, nutcracker of left renal vein, massive pelvic congestions and May Turner syndrome....

all due to a combo of weak connective tissue (sits in veins, too), wide hips and a lumbar lordosis.

A bad combination, wide hips being a female thing, hence often hiting females.

It's a hard long road and one step at a time and hoping to manage the next thing thrown at one.

All the best to you and that you can get best nutrition, gain weight and maybe your stomach could bounce back up? Hopefully it will! Take good care!!!!!

how is your daughter?

I have enteroptosis (small intestine) as well I still don’t have any pain but its very uncomfortable and I’m afraid of that how bad can it be later. Have you some good idea to make it better or retain the condition? 

And do you know maybe, is there a team or somebody who is dealing with this disease and with its healing? I mean, is there somebody who is researching it or we are just waiting for nothing? 

I’m sorry for your daughter. I (still) can’t imagine to live constantly with pain... 

(Sorry for my English)

Hi ENiko,

my girl is still in agony and getting weaker.

We saw a colorectal surgeon for advice and experience.

Answer: if the peristalsis was working, it didn't matter where the gut loops were located.

Unfortunately: my daughter's peristalsis is not working (gastric emptying study, colon transit time study).

Yet we have MALS/Dunbar, SMAS/Wilkie, nutcracker diagnosis and a neuronal antibody positive.

I am currently fighting -as there is no way for surgery without testing, which one is the worst for pain- to get 2 therapies rolling, that are recommended for neuronal gangliosid (GM1) antibodies, also being positive for a virus called 'Borna', which effects peristalsis in horses and birds, so it is discussed if the infection could do the same in some humans (very early days, but nothing is excluded in medicine and still a lot to learn. I hate nothing more than docs closing their eyes and ears and just refusing to learn or try):

ivIG

Amantadine 

We have tried all kinds of diets, probiotics. We are trying EDS supplement protocol.....

so far to no avail, she is getting weaker and weaker which can be due to the gangliosid antibody, but no one is acting. I am going in circles.

That's horrible , iam so sorry for ur daughter,i'm not officialy diagnosed but iam suffering with GI issues past 3 years and this month it got to the point where i'm almost bedridden  and by doctors being told it's in my head....It's just so frustrating and silly ...

Visceroptosis is dismissed or "forgotten" by current medicine which could be devastating to those which suffer from it . I think most people which have it don't even know what's causing their constant tortue and are missdiagnosed or undiagnosed as myself...

My story:https://www.reddit.com/r/AskDocs/comments/9fslvi/visceroptosis_undiagnosedno_answersleft_almost/

My symptoms match perfectly with symptoms of visceroptosis even constantly distented and bloated lower abdomen as u can see here:https://ibb.co/n31h4p

I'm really desparate to at least got diagnosis and to be treated as i deserve and not being stupidly told it's in my head i would be actually happy if it would be just in my head then it could be treated and i could be pain free....

There seem's no treatment besides of getting out colon as relief for constipatio,n but if small intestine is lying deep into pelvis there seem's to be nothing which surgeon can do about it.....

I found that there have been  done some surgeries in 20th century for visceroptosis but results were often unsatisfatory .

Sadly at least  people suffering with this condition were treated .....

I'm fed up and it seem's that i can't do anything about it. It's really sad i wish ur daugther will get better ! 

Please let me know if u find something usefull we can maybe help somehow each other

I will let the you and the world know should we find anything helpful!

Of course!

It's horrible to be in so much pain and often I think, they let you go 'mad' on purpose so that then docs can get one on psychological treatment. ?

Really disgusted with the medical system and the attitude, this unhelpful, dismissive luhluh attitude be it due to ignorance, unwillingness to learn or the pressure government and insurances exercise on docs to minimise cost.

They don't think any further: anyone made unable to work is causing cost on the system and no tax in return except for our taxed goods. Well yes, docs get fees and pharma and supplement companies might thrive.

It is much more expensive for the social system though, for the state,

to cause disabled cases for decades due to ignorance and not acting, have them return and return instead of throwing in a huge amount once and get people fixed.

Like in every part in life, also for chronic pain sufferers the shortsightedness rules.

Best of luck! 

You have had all kinds of breath tests (sugars, SIBO, h.pyl), didn't you?

You have had tries of different motility drugs? (We had domperidone, metoclopramide. But we did not get prucalopride or erythromycin)

Are you taking Magnesium Citrate (Calm) each evening? (The only thing that helps my child a bit to 'go', no other Magnesium brand strangely does help)

I would have her removed a part of guts if there was a glimpse of hope, but as said, docs believe with peristalsis it should still work (hence my push again for Amantadine off label use try to get the neurological part functioning. It's for Parkingson, which is neurological disease and no one knows actually how Amantadine works, but know, that it does work).

I will push again for off label try, for 'research' as docs have to follow guidelines not to loose their jobs.

uagh, so tired of it all.

My girl does have SMAS, MALS and nutcracker and those conditions can slow down peristalsis.

Sometimes accelerate it, but also slow it down.

Maybe you can ask specifically, if MALS was excluded for sure (vascular ultrasound exhaling, inhaling. In vascular CT often overlooked as only arteries are checked, not the crura and ligament position itself onto coeliac ganglion. Reviewing existing imaging is often very beneficial.) or SMAS? Anatomical issues will never go away by 'talking about it', chemical misfunction (neurological) will never go away by talking about it, underlaying possible connective tissue weakness will never go away by talking about it. We need targeted help, precision medicine has still not made it through into main stream.

Yes please,

do not give up fighting!

We refuse to give up even accused of doc shopping! Rare diseases and their dismissal FORCE one to seek another and another advice. We patients wish too, that it was not needed.

I read you are 18 now. So you can go into the adult doc world, which is usually so much better than the paediatric luhluh 'do no harm by do nothing than talk' world.

Best of luck!

Hi Surviver85,

I have visceroptosis as well. I'm not diagnosed because I wanted to make a small bowel-barium test but the doctor made only a stomach-barium test because I'm still young and the examination goes with to much radiation. But it was a new information for me: my stomach is sunk a little bit as well... The doctors don't want to hear about visceroptosis, even if I mention it them... But one of them said that MR with contrast substance / agent can show visceroptosis as well (and there is no radiation) and that MR is more informative than barium test. I didn't make this examination yet because I'm afraid that it could make my condition worse. I still don't have pain but my situation is always worse a little...

Get better soon!

I had barium in standing position and i can see by myself that my stomach is a bit too low and extended and my colon and small bowel pretty deep in pelvis but radiologist said everything looks omfg does they even know that this condition exist bcs i think that they have no idea but i got copies of RTG on cd so iam gonnaa see GI or my lovely surgeon and send them images and will see how they gonna respond.....

It's so annoying that they are ignoring this condition... But write me please what do they say about your X-ray photograph, I'm curious...

When you show or talk about x-ray you should show these articles, too:

https://www.eventscribe.com/2018/ACG/ajaxcalls/PosterInfo.asp?efp=RFNSWFFHSFY2NDI0&PosterID=163022&rnd=0.898998

https://mobile.twitter.com/AliRezaieMD/status/1049685476624470017?s=20

http://www.amhsjournal.org/article.asp?issn=2321-4848;year=2016;volume=4;issue=1;spage=153;epage=154;aulast=Sarangapani;type=3

I talked to a doc who explained me a possible cause. It may be a defect in genome to detoxicate + heavy metal contamination (maybe + stress). Birth control pill may contribute to problems with GI tract (influence on intestinal flora) and cause bladder infection.... Connective tissue gets ruined and thats why guts are sinking.

Interesting would definitely check it out

I got more tests on EDS and with me it is a TNXB gen mutation that may cause my GI problems. There are 2 articles on PubMed concerning TNX Protein and GI function. They expect a new mutation, my parents get tested currently. Maybe it was en epigenetic thing that destroyed the sequence. We will see.