CT scan - some thickening of proximal duodenum?

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Aw niks I'm so sorry, I hope she gets
The scope today.
As for the other doctor missing abnormalities in
Her small bowel that's truly makes me so mad
Good job you got a fresh pair of eyes that
Spotted it. Poor girl she been though to much.
Hugs to you and jaime x x x
 
Farmwife said:
Are they thinking it's scare tissue? Strictures would defiantly cause what she's having. I'm also wondering that for Grace. She also has constipation and has vomited. But not like your girl. Hugs.
Click to expand...

Not sure FW. I think she is too upset to take it all in. She had prepared for scopes today and now it may not happen!
 
Oh god, so sorry you have to wait even longer for scopes, so so frustrating for you both, will be thinking of you both over the next few days.

Regarding fibre, my son went on a low residue diet when he had his vomitting episodes before his surgery last year, and this included no fibre! It sounded strange to us, as he liked brown bread and all the other stuff full of fibre, so he changed over to white bread and cut the other fibre stuff, and he was much better for it, fibre is hard to digest, and tended to sit on him, these days he still has white bread and watches fibre intake.

Good luck and fingers crossed first on the list friday morning x
 
Niks, so sorry that Jamie has to wait longer to get the scopes done!!! OMG, it seems the poor girl has constant roadblocks in her way! Sending lots of hugs to you and Jamie.

By the way, Stephen was also on a low residue diet for a few days while waiting for his scopes.
 
UGGH! so sorry you guys have to wait even longer. I was hoping to pop on here this morning and see that scopes went well and you had some answers. Hang in there, tell Jamie we are all thinking of her and sending her lots of hugs :ghug:
 
I'm so sorry :( She (and you) must be so incredibly frustrated. Prayers that everything goes off without a hitch on Friday.
 
What a shame. Working herself up for scopes and not having it done. The more you tell us about the old GI the more I wonder how he manages to stay employed!
When Andrew was first diagnosed I remember the GI telling us to limit fibre as well. That's why we changed to white bread and pasta and I don't give him too much of bran cereals which he likes.
 
Tell her to hang in there Niks. Sounds like you are on the right track now.

Is she feeling any better? Are they able to control the vomiting or at least get her some nutrition?

((((((Hugs))))))
 
JohnnysMom - now that they have cleared her out with enemas she has stopped vomiting which is good, but the last 3 days the enemas haven't worked!! They think she has inflammation or a narrowing in small bowel that is stopping it moving down!!

Hopefully we will know soon. She is still in pain and feels really bloated.

One of the nurses told her if she didn't get scoped on Friday, because they are unsure if consultant available to do it, will be Monday!!! Really hope she doesn't have to wait that long :(
 
Oh my goodness Niks,
I can't believe this. How crazy. Keeping my fingers crossed they do it on Friday and don't have to wait until Monday. I can't believe they only had one machine and it was broken. That is so crazy. Sending hugs!
 
For what it's worth....
We've just been through a tough two month bout ourselves. My son was in pain, couldn't eat much and wouldn't stay hooked-up to his GJ-tube for his elemental feeds. The net result, was a huge drop in weight. We know he has a few very bad strictures, that's why he's doing the tube feeds as a supplement to eating normally. Anyway, I reached my limit, raised the white flag and surrendered to the fact that we needed to go a different route. He had a PICC line put into his arm and we started IV TPN feeds. The PICC line has been in for two weeks now. We went to the doctor today and he has already GAINED 10 pounds!! What a difference it has made bypass the digestive system and put nutrition straight into the veins. We are running it at home overnight. He is able to go to school and maintain his normal routine.

Niks...while they are trying to figure things out for Jamie, perhaps a PICC line is the way to go? Keep the idea in your back pocket anyway!
 
Niks and Jaime, I'm sorry you've come up against another obstacle. Prepping and then not being able to go through with it seems a terrible trick! Come on docs! One of you can do this girl's scopes! I thought they moved her up in line! Ugh! <<<HUGS>>> I hope they get it done Friday (which I think is today for you, but still tomorrow for me!)
 
Thinking of you <3...sorry for the path you've been on lately, but hoping for more answers shortly for you.
From what I remember low fiber is used when they suspect a stricture to avoid food getting stuck in a narrow passage.
Hoping she gets scoped today...and PUSH for it, mama...maybe being the squeaky wheel will get you somewhere! Poor girl needs some type of answer, and soon!!
 
Scopes done! Haven't seen dr but biopsies taken. Don't think anything obvious. Didn't think there would be!!

Just waiting to see next plan. Hoping to go home, she seems to think as long as we can do enemas at home she can come back for more tests! She has at least stopped vomiting!!
 
Understand her wanting to go home but I would be afraid. Glad scopes were done and she doesn't have to wait any longer for that. Glad MRE is being done fairly quickly as well, poor girl but I'm sure this will give her and you some answers soon.
 
I'm so happy the scopes are done and the MRE is booked!! I agree with Jacqui though, I would be so afraid to have her home until this is all sorted out. She's been so sick. I hope things turn around quickly and you have answers AND she starts feeling better! (((((hugs)))))
 
I am so happy to hear the Scopes were done and the MRE is booked.hopefully no more obstacle and finally some answers! hopefully a restful weekend for you both.I know being in the hospital stinks but at least she is finally bring cared for. tell Jaime we are thinking of her.
 
She's staying in, but allowed out for a few hours over the weekend!

The doctor said that her original CT scan shows a 'tethered' bowel! Her old GI didn't spot this. It is where she has all her pain!! Has anyone heard of this??

Hopefully MRE will show more..
 
Well I glad she's staying and I'm glad she'll set out for awhile.

Have you asked the Doctors about the tethered bowel and what could be causing it?
It's one of those things you need to ask the doc and NOT look it up on-line because you just don't know at this point.

I'm sure if someone on here has had it they'll let you know.

HUGS
 
Yes FW doctors are uncertain right now. They are pretty sure the motility in her bowel is very poor, but just wondering if this could be why. Doctors very vague! Don't think it's a normal straight forward problem!!
 
Well from what I've seen (someone on here correct me if I'm wrong) on the Internet it COULD be from liquid forming in the bowel that causes problems. AGAIN she has motility problems that would make sense. Keep in mind I'm just a farmwife not a doc.:smile:
 
Tethered means joined. I.can understand how that would cause pain as the bowel would not be able to move in the normal way.
 
I think Sascot daughter had kind of the same situation. I think it was her appendix the was adhered to her intestine. Was very painful and they removed it and now she's better, right Sascot?
 
Yay for scopes being done! Yes, Amy had to have her appendix detached from her bowel before they could remove it. I would imagine anything joined/tethered to something it's not supposed to would have the potential to cause pain, especially over a long period of time. Sounds like that GI missed alot of important stuff!
 
Her appendix got taken out a few years back when all this very first started!! At least we don't have to worry about that. She has resigned herself to staying for the weekend, but is clinging on to coming home on Monday after MRE.

My concern is her getting backed up again, at the moment she is having daily enemas, can we do that at home? Over the last week she has only vomited twice!! This is incredible, but don't want it all to go dreadfully wrong again.

If her bowel is tethered, can this be sorted out?? I have tried searching on the internet and I can't really work out anything, it seems really complicated.

:eek2:

They are really questioning Coeliac Diagnosis, but advised her for now to stay gluten free.
 
Niks,
Out of curiosity did she have her appendix out and then all this started up? I am wondering if it could be related to adhesions which can occur from surgery. Kind of like Rowan ( queen gothels daughter) had all that trouble from.
 
She had the abdo pain, but none of the other sypmtoms. They took out appendix and then investigated down the gynae route. Nothing ever came up, but on one laparoscopy looking for endometriosis, they found that she had an imflammed bowel.

So I guess that was the start of what is going on now!
 
Sounds like then part of the issue could be from adhesions. Hmm, curious and curiouser. Mention to the doctor on Monday if it could be from surgical adhesions.
 
I was thinking the exact same thing Kim... that if her problems started after having her appendix removed, it could be adhesions causing some of her current pain. Jamie may have had reason (pain) to remove her appendix but the issues that have followed may be related to adhesions.
 
Hi Niks,

I am glad that they are finding these things in all the previous tests and you are not being sent home with more anti-sickness meds. I'd want my daughter to stay and be thier top priority until you find answers. Going home means standing in line again to get their attention! Remind Jamie of that! I know the hospital isn't fun, but it is so important for her right now!
 
Niks, My first question was tethered to what? I tried to help do some searching for you too. Found something called Clinical Imaging of the Small Intestine. It's a PDF file. There is a good description of tethering of folds on page 542. It also talks about strictures and adhesions and has a few images too. Hope it is helpful: http://books.google.com/books?id=sO...CA#v=onepage&q=what is tethered bowel&f=false

Tell Jamie to try to be patient (While she's a patient...LOL). It's not fun to spend so much time in the hospital, however leaving and then bouncing back into the hospital right away isn't any fun either. It's much better to have your questions answered and allow the doctors to do a full investigation the first time.

Cheryl
 
She had her appendix removed through key hole, it was healthy and at the time didn't make any difference to the pain and sickness (although no where near as bad as she has recently had). It just seemed to disappear, and came back from time to time for a month or two each time. This time however it just hasn't gone!

I agree she needs to stay, and she is really happy that she is allowed out today for 5 whole hours!! We are going to go and spend some time at her aunt's house who lives locally.

Thank you all for the links, suggestions and support! :ghug: It is worth checking out whether her previous op has anything to do with all of this too!

vtfamily - I got the impression that her bowel is tethered to itself, but will certainly check that. It is just a shock when your GI tells you her CT scan is normal when someone else looks at it, it really isn't!
 
Enjoy the free time! The outside world seems so much better when you've been in hospital :smile:
 
Hey Niks...:hug:

My goodness, what a ride you have had! :yfaint:

I well understand Jamie's desire to be out of there, even a few hours will make the world of difference, believe you me! :)

Just putting it out there...inflammation of the bowel also has the potential to cause tethering of bowel loops either to each other and/or to surrounding structures. The inflammatory process literally causes them to stick together (tethering).

Good luck with the MRE! I hope you both get the answers you need...:heart:

Dusty. xxx
 
Glad she stayed in for the weekend! Enjoy your time out!! Even only a few hours will make a huge difference!

:ghug:
 
Jaime enjoyed going out today but was equally glad to get back for pain relief. She vomited once and had bad abdo pain! :frown:

She felf better when I left, but keeps feeling really hot, even when it is really not very warm!! She was stood by the window a lot to try and cool off. The nurse checked her temperature 35.2!! That seems really low? Looking at all of her recorded temperatures they are all really low. The highest is 36.4. It is odd that she feels so hot and odd that her body temperature is so low.
 
Hugs to Jaime. I'm glad she got out, but also glad she's back in good hands while this gets sorted out... Wierd about her temps.
 
Glad she got to go out for a little bit but sorry she started feeling poorly again. Low body temperature can be caused by hypothyroidism. Has she had her thyroid checked? It can also be caused by low blood sugar which may make sense if she is vomiting and not keeping any food down she certainly may have low blood sugars.
 
So good to hear that Jamie had a good time out. :)

Sorry I am out of sync with all this Niks but is Jamie still on Pred? If so it can mask a temperature and signs of infection.

Thinking of you, :heart:
Dusty. xxx
 
Dusty, they are reducing Pred. She is on 20mg at the moment. Nursing staff don't seem concerned about temperature though.. Maybe that's just her?

Kim, her vomiting is so much better, when she first was admitted her blood sugars were really low. 2.3.. I think they got that under control and not checking it now.

xx
 
Niks,

You've done an AMAZING job with all of this! Probably the best take away, is to know that when the doctors give you dumb answers in the future (and they will), trust your instincts and keep pushing for answers.

It seems like this disease always comes with news you never expected. This week we were informed that my son has bile reflux. Similar to acid reflux, but the bile isn't draining from the stomach or jejunum properly. So now we have to determine if the bile reflux is a symptom or a cause. Either way, it is not helping the Crohn's inflammation or ulcers at all!

We will continue to pray for you and Jamie...and the doctor's too.
Cheryl
 
Hi Niks -
Danny's temp is typically low and he is always hotter than others- even as an infant he always kicked off his blanket. And when he was at his sickest, he was the hottest. He went a few years with only wearing shorts. I have no idea what it means.
 
Just chiming in, trying to get caught up on this thread. Niks sounds obstructive yes. I see they scheduled her for a MRE. Has she had a fluoroscopy done for upper GI and small bowel follow through. This is usually the test that shows better that there is an obstruction and exactly where it is. I hope you get this figured out soon. I read the last portion of this. Rowan had a very large obstruction and unfortunately this test (she had 4, 2 barium swallow and 2 enemas) were all inconclusive for her and it wasn't until they went in and explored that they found 3 obstructions. Hopefully they can avoid this. Adhesions can really be a bugger to deal with. But I see she has had previous surgeries so I am thinking it could be very possible.

Hugs to you both.
 
Hmmmm - Good news is she is home!! Very happy about that! Has been discharged with a letter saying : Diagnosis probable small bowel dysmobility but further investigations pending.

He told her that her MRE results were pretty good. There are a couple of things but nothing to cause major concern! What does that even mean!!! :yrolleyes:

He thinks that the bowel tethering was probably down to her appendix being removed.

She needs to stay on daily enemas to keep her moving!

He will look thoroughly at MRE and wants to see her in clinic on 2nd April.. So I don't really know what to think!!! Not really any further forward, but he does sound like he wants to do further investigations. Can she stay on enemas indefintitely?
 
Niks
It took them number of opinions to work out what Sarah's MRE actually mean. MRE take carefully reading.

Sound like her MRE has been read to rule out the really bad things and now needs reading for the more subtle things.
 
Niks,
So glad she is home. Like Catherine said sometimes the MRE has to be reviewed carefully to look for more subtle things when the big bads have been ruled out. I am so glad it sounds like they will continue to investigate.
From what I have read I don't think it is healthy to be on enemas long term because it interferes with the ability of the gut to do what it is supposed to on its own:
http://drbenkim.com/articles-enema.htm
Remember though this is my opinion and i am not a GI doctor ( nor do I play one on TV, lol)
So of course it will depend on what your doctor says.
 
Am guessing biopsy results on 2nd!! Will get a whole list of questions for him on 2nd. Is only 2 weeks away..
 
She must be happy being home!! Hope she keeps well for the next couple of weeks and you get some more answers on the 2nd. Never dealt with enemas so not sure about that.
 
Do they think they need to correct the tethering or do they not think it has anything to do with her ongoing issues?
 
I am glad she is happy to be home. Is she still in pain? I really hope he has a plan ... after having trouble for years to think this will work itself out does not sound right to me.
 
Both of you are probably sooo glad to be home. I am happy for you as well.

I don't know if this helps you or if it will worry you more. (Hoping for helping you) In my experience with the "moment" they told me Rowan was having mobility issues. All results pointed to mobility issues but her surgeon was not convinced. All of Rowans tests we wrong and she in fact had large adhesions and that omentum was strangling her intestines like a giant spider weaving its way through different areas of her intestines. (In areas she shouldn't have had adhesions bc no surgery would have created them, like they magically appeared) 2 enema studies and 2 upper GIs with follow through were wrong. Of course what is the chances this is happen to your girl as well. I know it is slim... but I would like to remain optimistic that this is fixable. The big factor that left Rowans surgeon not happy with the mobility issue diagnosis was that it came out of no where. She was doing great then wham!... obstructions symptoms that seems like they lasted forever. Of course the only way to know is to go in and look and that never makes any of us more comfy bc the risk of more adhesions are so possible. BUT Rowans surgeon said that they cannot rule it a mobility issue without doing an exploratory laparotomy and taking tissue and muscle samples to prove it. Once they were inside and saw all of the adhesions and that crazy omentum and they never took the samples for testing. Do you know how do they plan to prove it is a mobility issue? Are they planning to send you to a mobility expert? The place we were going to go was in Columbus OH. Here is the link

http://www.nationwidechildrens.org/motility-center
 
Last edited:
Glad she is home!! :)

Hoping you get more answers and she continues to feel better/improve at home! :ghug:
 
QueenGothel - thank you for all if this. I am pretty sceptical too.. I guess when we go on 2nd we can raise concerns

Dannys Mom - agree.. Doesn't seem right does it!

I don't know what his plans are. Really hope he has some good ideas!!
 
I'm glad they will be following up. I agree with everyone else, sounds like they have ruled out big things and need to dig a little deeper. I hope she is not in any pain. ((((hugs)))) hoping for an uneventful two weeks!
 
Have just got home, she has vomited 3 times today and looks dreadful :eek:

Hopefully just a blip, but a bit of a shame considering she's not been sick for so long.. She said it isn't necessarily after food, she wonders if she's picked up a bit of a bug from hospital, I guess that is very possible!

She has been asked by Oxford to take part in an IBD study. So has signed up for that. I don't actually think that Motility problems are really IBD though?
 
Well at least if they have her in the study it will keep her "in their radar". Hope she hasn't picked a bug up!
 
Maybe it was just the drive. Jae was doing very well for 3-4 days then had to make the drive to Anchorage and stirred everything up again. Perhaps now that Jamie is home things can settle down again :)
 
No vomiting, a little shaky. She had pretty bad pain during night, but seems better this morning. Hopefully turned the corner!
 
Regarding the low temperature, this can be seen with low body weight /malnutrition. The body turns down the metabolism when it is starving, and pulse and temp are low.

Good luck to you! So hoping you get the answers you need!
 
xmdmom said:
Regarding the low temperature, this can be seen with low body weight /malnutrition. The body turns down the metabolism when it is starving, and pulse and temp are low.

Good luck to you! So hoping you get the answers you need!
Click to expand...

This seems to make sense! Her BP is low too xx
 
Yes bp can be quite low too with malnutrition. Do you know her current BMI or weight and height? What nutrition (calories) is she getting in currently.
Doctors sometimes focus on the problem but neglect nutrition while they are figuring it out. When the figuring it out takes a long time, it's essential to deal with the nutrition!
 
Her BMI at the moment is 16.9.. They are watching weight and topping up calories with Fortisip Compact, which she is tolerating at the moment!
 
She's in a fair bit of pain but coping pretty well. We are both just hanging on for 2nd to see what GI thinks and what he wants to do!! Xx
 

Similar threads

K
Possible Crohn’s disease
Replies
10
Views
1K
musicalwiz
M
C
Your thoughts, please. 10 yr old.
Replies
12
Views
794
wenkren21
W
M
7 year old in pain not diagnosed
Replies
4
Views
1K
my little penguin
my little penguin
A
No Diagnosis
Replies
18
Views
2K
my little penguin
my little penguin
R
(My Story) Looking for answers!
Replies
20
Views
3K
Aituk7
A

Latest posts

Back
Top