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Collapsed duodenum – what does it mean?

25 replies

BlackInk · 27/04/2022 14:19

Does anyone know what a collapsed duodenum is, or whether it matters?

I had a CT scan a few weeks ago and have just received a letter from the consultant saying everything looked 'reassuringly normal' but the scan report noted a collapsed duodenum (and multiple liver cysts).

I've done some thorough googling, but can't really find anything about this online. Lots about obstructed/inflamed duodenums but the word collapsed doesn't seem to come up.

I have ongoing pretty miserable stomach symptoms so was referred initially for an endoscopy. The endoscopist failed to complete the examination because they couldn't get the scope through my duodenum – they suspected because of a technical issue with the scope, and referred me on for the CT scan to check it out. Could it be that the collapsed duodenum stopped the scope passing through, and could also be the cause of my issues? I guess the consultant doesn't think so...

So I thought maybe it's normal for the duodenum to be collapsed during a CT scan, but again I can't find anything about this online.

It will be weeks/months before I can see the consultant to ask these questions.

Thanks for reading!

OP posts:
Birdy78 · 27/04/2022 14:24

I’m no help where medical issues are concerned but I’m sure someone wise will come along soon and help you. Just wanted to say try not to worry and hope you feel better soon.

BlackInk · 27/04/2022 14:53

Thanks @Birdy78 that's really kind!

OP posts:
BlackInk · 28/04/2022 10:59

Shameless bump :)

OP posts:
MissWired · 28/04/2022 11:41

I don't have a medical background but if you do a google search for "compression of the duodenum", a few things come up as a possibility.

BlackInk · 28/04/2022 12:11

Thanks @MissWired I've just checked that out and it sounds pretty serious... my consultant hasn't flagged it up as an issue so I guess it can't be that.

Perhaps I should just assume it's normal for the duodenum to be collapsed on a CT scan, but it's strange that I can't find any reference to it online. I just feel like I'm being constantly dismissed when something definitely isn't right with me....

OP posts:
Kat1953 · 28/04/2022 12:46

Disclaimer: not a medical professional nor have I heard of a collapsed duodenum.

I do have significant bowel issues though and from my own experience, I would guess that your collapsed duodenum is the cause of your symptoms (although you don't explain what these are), or at least part of them. Especially given that you've not said they found any evidence of disease.

As to the seriousness of it, I think how critical it is depends on how severe the collapse is. I'm assuming, like you, the collapse refers to a physical collapse of the bowel.

Depending on the severity and its impact on your life, it could require surgery to fix or you might be able to manage it conservatively going forward. And in your shoes, I would have assumed it was the reason why the scope couldn't pass through the duodenum.

Really, you should have an appointment with your consultant so that they can explain exactly what the results mean for you and what your options are.

Has an appointment not been made? If not then don't hesitate to chase it up and your gp might be helpful for this but given that your scan was a few weeks ago, I'd go straight to your consultant and their secretary and insist upon a face to face follow up with them. I would absolutely expect to have this appointment within 4-6 weeks depending on severity (although pre covid I'd have said 2 weeks).

Take a list of all questions and concerns you have, take your time in the appointment and make notes when you're there or take someone with you.

As a minimum, I'd imagine your questions to include:

What is a collapsed duodenum exactly?
Is there another term for it? (If so will help you research)
What caused it?
How serious is it?
How does it relate to your symptoms?
What are treatment options? ...Surgery, liklihood of and risks/benefits?
Can it be managed conservatively? How?
...through diet or medication?
Do you need to avoid certain food and medication as a result?
Long term prognosis for impact on your life, severity, chance of reoccurrence and how it wl be dealt with.
Is it always collapsed or the collapse happening intermittently? If so, why?
Has it been pushed by something outside to collapse? (Although you'd think this would have been spotted on ct)

To me, a collapsed duodenum suggests part of the bowel or bowel wall is collapsing inwards, causing an obstruction. Bowel obstructions are nasty. There's a risk of infection, damage to the tissue (which in very severe cases can lead to tissue death) through obstructing the blood supply etc. Obstructions are also painful.

There's a difference,however, between acute obstructions which are liable to be excruciating and are medical emergency and living with something like a stricture or narrowing of the bowel down to something like adhesions.

Living with a compromised bowel (eg stricture or narrowing) can also be miserable and can also need conservatively management. Eg diet and medication.

You might find it useful to ask about this on the Crohns and Colitis charity forums where there might be others able to advise either from personal experience of a collapsed duodenum, or, like me, those with otherwise compromised bowel function.

Don't be content to let this rest with your scan results though. While it doesnt sound like the results youve received are worrying, you should have had a follow up to discuss AND given that they're investigating symptoms and nothing else has been found, they ought to be looking into this further.

To me it sounds like no one is taking actual responsibility for organising your follow up which absolutely should have happened.

You might need to kick up a fuss to get the cogs of the nhs appointment system turning, op, but do so.

Kat1953 · 28/04/2022 12:48

P.s. add to your list of questions how they will monitor the collapse going forward. Eg annual scopes or CT scans?

QuebecBagnet · 28/04/2022 12:57

I have no idea but Dd had a testyears ago where this was picked up but we were never told. I can’t remember if it was during an mri or an endoscopy. A year later she needed a repeat endoscopy and we were sent to the wrong hospital. The hospital told us to go to their sister hospital an hour away and btw could we take DD’s huge set of hospital notes with us as they were also in the wrong place.

during the drive Dd was reading her notes and this was definitely written in a report, Dd was crying asking what it meant (she has a lot of gastro issues). I definitely saw it when we were stopped at traffic lights.

we ran into the correct hospital and she had her scan. At the following consultant appt we asked about her collapsed duodenum and he told us not to be daft and she didn’t have one. We said we’d both seen it in her notes but he totally dismissed us.

so never had an answer. She still has terrible gastro issues. Bad constipation, nausea, vomiting, can’t eat much.

Kat1953 · 28/04/2022 13:17

That's appalling @QuebecBagnet

Has she ever gone to a new gp with her symptoms for investigation?

@BlackInk I found these links:

www.reddit.com/r/AskDocs/comments/68bkoo/collapsed_duodenum_crohns_disease_or_celiac_can/

pubs.rsna.org/doi/full/10.1148/radiographics.21.suppl_1.g01oc01s147

www.phaa.com/duodenum-pain-problems-causes-and-treatment.htm

I've sent you a private message too

QuebecBagnet · 28/04/2022 14:03

@Kat1953 yes, she was back at the gp only last week. Got prescribed fibrogel. This has been going on for over a decade. No answers, no help. Must admit I didn’t mention the collapsed duodenum to the gp. Might pull that out the bag next time. I did ask about gastroparesis and gp fobbed that off and said Dd would feel bloated all the time if it was that. Dd piped up that she does feel bloated all the time and dr just changed the subject. I’m beginning to worry they think I’ve got munchassen by proxy.

QuebecBagnet · 28/04/2022 14:11

Those links are interesting. Dd is a diagnosed coeliac and I suppose the test where her collapsed duodenum was found would have been done when she was diagnosed. She collapsed and was rushed to hospital unconscious due to chronic malnutrition and was admitted for a week.

She’d still been eating gluten at this point as we were waiting for an endoscopy to confirm. So maybe the duodenum problem was related to coeliac disease. She’s been explicitly told she does not have IBD or Crohn’s disease.

Kat1953 · 28/04/2022 14:14

How old is your daughter @QuebecBagnet ?

Do you keep a symptom diary?

I wonder if it would help making a factual list of all her symptoms and average frequency and present in conjunction with a symptom diary maintained over a few weeks?

Sometimes it's easier to get the message across when the gp has something physical in front them that is emotionless, to the point and demonstrates the reality.

Terrible to say, but if your dd breaks down and cries during the appointment,it can help too. :/

Symptom diaries can include...
Time of bowel movements, description of what is passed with pain rating
Time and occurances of nausea, vomiting, pain, dizziness etc
Energy levels - by day or how they're varying during the day
What is eaten, how much and when
Impact of any physical activity

Etc

Kat1953 · 28/04/2022 14:19

Good news that she doesn't have IBD (crohns is a type of IBD), although coeliac disease is bad enough.

Is her coeliac disease not managed by a gastroenterlogy consultant? I would have thought it would be!

BlackInk · 28/04/2022 14:44

Thanks @Kat1953 for your detailed reply, and for the PM, which I'll respond to when I've had time to digest it all... no pun intended ;)

This is a screen shot of the letter from my gastroenterologist – it's definitely phrased to make the collapsed duodenum sound incidental/insignificant, but I've emailed his secretary and she's requested an appointment, so will have to wait for that to turn up in the post....

Collapsed duodenum – what does it mean?
OP posts:
Ladyglittersparkleseriously · 28/04/2022 14:49

Not a medic here either (sorry) and glad you are following this up, but my Dad had a 'collapsed' bladder on a scan last year and we were told that it just meant that it was empty at the time of the scan, so nothing to worry about. Hopefully this is all it means for your DD as well!

Kat1953 · 28/04/2022 15:02

Oh OK, his does read much more reassuringly!

As I said, I don't know anything about a collapsed duodenum so hopefully this means it really is nothing to be concerned about. Maybe a doctor on here will see this and be able to reassure you as well.

I'm really glad you're going ahead with the appointment he's offered to discuss your ongoing symptoms. I'd prepare as much as possible for it, but objectively so - consultants are usually v to the point and they might be conscious of a long list on the day you see him.

I think a symptom diary would be useful and you might like to take along copies of previous test results just in case (make sure you keep copies for yourself). I'm guessing he specialises in bowels, so I'd open with your digestive symptoms first.

If you find you're being treated as a hyperchondriac by doctors then it's important to be deliver the facts coherently. I'm not saying you can't let your emotion show if it hits you while you're there, but try and give them the pertinent information first.

I don't know if you've had an offer of symptom mangement from a consultant before but this looks like good news, once you're through the door with a good consultant it can be easier to get joined-up care.

I hope he'll agree to continue seeing you and not discharge you back to your gp after this next appointment. 🤞🏻

Wishing you so much luck!

QuebecBagnet · 28/04/2022 15:14

She’s 21yo. I have nagged her about a symptom diary but she doesn’t bother. She’s been discharged by her gastro consultant as they said she just needs to be gluten free and then she’ll be ok.

QuebecBagnet · 28/04/2022 15:15

Ladyglittersparkleseriously · 28/04/2022 14:49

Not a medic here either (sorry) and glad you are following this up, but my Dad had a 'collapsed' bladder on a scan last year and we were told that it just meant that it was empty at the time of the scan, so nothing to worry about. Hopefully this is all it means for your DD as well!

Oh that could make sense. And far less worrying.

Kat1953 · 28/04/2022 16:07

Is she a bit hit & miss at keeping gluten free then? I know its really difficult but even a tiny amount of gluten will damage her bowel.

Rodion · 28/04/2022 16:14

I think it just means that it isn't being filled out at that moment (either by food matter or gas) so the appearance on the CT is flattened. Rather like a sock that has just come out the washing machine is has the sides touching together as opposed to separated out when your foot is in it.

Octopuscrazy · 28/04/2022 16:42

Rodion · 28/04/2022 16:14

I think it just means that it isn't being filled out at that moment (either by food matter or gas) so the appearance on the CT is flattened. Rather like a sock that has just come out the washing machine is has the sides touching together as opposed to separated out when your foot is in it.

This is what it means.
It also suggests that they can't be 100% certain that there is nothing because the walls are flattened not stretched but most likely is fine.

*I am a doctor

Octopuscrazy · 28/04/2022 16:42

Was supposed to quote rodions post.
Which is an excellent explanation but the app is not letting me

thesootherfairy · 28/04/2022 19:56

It's a bowel obstruction

BlackInk · 29/04/2022 10:15

Thanks @Octopuscrazy I did wonder whether that might be the case, but then wondered why it was noted in the letter. Surely everybody's intestines would be empty for an abdominal CT scan as you're not allowed to eat for hours beforehand, so seems strange that it's mentioned. Also bothered me that the endoscopist was unable to get the scope through my duodenum, which is why I had the CT scan in the first place. I guess I'll just have to wait for a follow-up appointment to ask questions.
@thesootherfairy That's what Google comes up with if you search for collapsed duodenum, but presumably the consultant would have thought it significant if that was the case...

OP posts:
Moreguac · 01/05/2022 03:16

As others have said, a collapsed duodenum generally means that it wasn’t filled with gas or digested food.
is there a reason why you’re focussing on that aspect of a report ?
It is reported because that is what was seen rather that not mentioning the duodenum at all.

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