Crohn's Disease Forum » Parents of Kids with IBD » CT scan - some thickening of proximal duodenum?


 
02-27-2013, 06:27 AM   #1
Niks
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CT scan - some thickening of proximal duodenum?

Have just received a copy of the letter from J's GI..

At last consultation he questioned her vomiting, and said there was no cause and her bloods have come back normal. (B12 was very low and she did have B12 loading dose)

She is still vomiting EVERY day, and vomited blood two days ago.

GI said all tests have been clear! This is what he put on letter to GP though.

Diagnosis:

Coeliac disease
Persistent vomiting ? cause
Barium follow through - vomited Barium: poor emptying
CT scan - some thickening of proximal duodenum!!!!


HOW can he say that her tests have come back NORMAL?? This isn't normal!

Does anyone know what thickening of proximal duodenum cause could be?

Thanks you
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Daughter 24, 1. Upper GI and colonic dysmotility with viscernal hypersensitivity.
2. Predominant Constipation with slow colonic transit and moderate gastroparesis,
3. Nephrolithiasis
4. Osteoporosis
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02-27-2013, 06:45 AM   #2
lukefarrell
 
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It sounds like it could possibly be a stricture , which in turn can cause obstruction of the small bowel or partial obstruction.

What other symptoms is your daughter experiencing?
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02-27-2013, 06:56 AM   #3
Niks
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She has been admitted 6 times to hospital since last October. Twice with partial or obstruction.

Vomiting is the worst symptom, she barely holds anything down. Has had two episodes with vomiting blood, 1st was clots, second dark red blood.
Weight loss of over 2 stone
Initial symptom was rectal bleeding - colonoscopy showed some inflammation.
(while on prednisolone she doesn't bleed but it comes back when tapering off)
Lower left abdo pain. This is constant, but varies in severity.
Uses lots of laxatives, but now bowels open very irregularly, 5-10 days apart.
Aches pretty much all over.
Had severe pins and needles, but this has gone after B12 loading dose.

Her bloods come back in the 'normal' range, except B12 which was really low.

Her GI asked me if I had 'seen' her being sick!!! He doesn't seem to take her seriously and basically told us that her tests had all came back normal, then I got this letter today!
02-27-2013, 07:24 AM   #4
dannysmom
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Wow .... when is her appointment with a new GI again?
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02-27-2013, 07:29 AM   #5
Niks
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Jeanne - she hasn't got one yet! Waiting on complaints procedure and possible MRE, but haven't heard whether that has got approved by funding panel.

She is so unhappy at the moment. I am very worried about her. She is tapering off all meds and has agreed if she gets any worse that she will go to another hospital.

02-27-2013, 07:55 AM   #6
lukefarrell
 
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From what you are describing it sounds like she has a stricture, this could be due to current inflation or scar tissue. You need to get to the bottom of this and get a solution it is possible, your daughter just needs the correct treatment. This could but finding which drugs are going to keep her in remission or possibly surgery to repair the stricture.

Also if you are not happy with your GI then make this known and most of all be persistent with the doctors until you get the results you need and answers you want for your daughter. It's their duty to answer every single question and query you have over and over again so don't leave the next appointment until every base is covered.
02-27-2013, 08:16 AM   #7
Niks
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Thank you Luke. She refuses to go back to her GI, as she was made to feel she was lying and it was all in her head.

We are pushing for a second opinion, it should never be this hard though or take so long!
02-27-2013, 08:27 AM   #8
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It's frustrating and she will probably be very angry (understandably) but the older I get the better I am getting at standing up for myself when not provided with what I feel is an unacceptable response from my GI. It took me 2 years of constant trips to the GI to convince them I had to see a surgeon as I thought I had a stricture. They kept saying I had constipation and sent me home with laxatives. But I persevered and got surgery last September on what turned out to be a 15cm stricture in my ileum.

Just keep at it and keep going and you will get there eventually! Good luck
02-27-2013, 08:52 AM   #9
Devynnsmom
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I don't have any advice on what that could mean. But I hope you get to the bottom of it soon. I think I would blast that doctor for telling you everything was normal!! Keep pushing for another doctor. ((((((hugs)))))) to both of you. I can't imagine how frustrated and exhausted you must be.
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Devynn (12 years old) was *unoficially* diagnosed with Crohn's disease in Dec 2009.
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02-27-2013, 01:58 PM   #10
upsetmom
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I don't blame your daughter for not wanting to see this GI again....i personally wouldn't take her back.....try find another DR .

I hope someone finally gets down to the bottom of this it's been going on for too long.
02-28-2013, 07:12 AM   #11
Niks
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UUUUURRRRGGGGHHH

J has woken up this morining and feels really poorly. Bad abdo pain, vomiting and dry retching. We don't have a BP machine but her pulse rate has varied between 104 and 136. She had a BM on Tuesday so don't think she's obstructed.

NO news from hospital about MRE. I am guessing that they don't want to fund it! Really beginning to loose the plot. Will keep ringing nurse.
02-28-2013, 08:57 AM   #12
Sascot
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Might be time to take that trip to the other A&E. Maybe a fresh set of eyes will help, at least another A&E trip might speed up other things like the second opinion. I truly wish they would do something else to help her - now!
02-28-2013, 08:59 AM   #13
Niks
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Yep, think that's where we are heading... Was so hoping on getting MRE done soon, but how long do you wait!
02-28-2013, 01:01 PM   #14
upsetmom
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How's J ?
Did you end up going to another A&E ?
02-28-2013, 01:43 PM   #15
Niks
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No! She doesn't feel that she is as poorly as the last times she was admitted, mainly because she knows that she has been to the toilet in the last few days and not obstructed.

She doesn't want to go and not be taken seriously.

I think bad experiences at hospitals have a long term affect.

She will go though, when she really can't stand it anymore.

STILL nothing from our hospital!
02-28-2013, 04:38 PM   #16
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Keep nagging them. When I was desperately waiting for an appointment for Amy last year, I phoned the MRI department and practically begged the appointment lady for any cancellations. If you can get a secretary on your side (with your mobile number next to her phone), they can sometimes push things on and also make you her first thought if a cancellation comes in.
03-01-2013, 12:09 PM   #17
Niks
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Finally heard from nurse. MRE not going to be done as they don't think she'll retain the fluid. Oh so NOW he believes she's vomiting everything!

He wants to re do CT scan and he has 'another' test which he's writing to me about!!! She couldn't tell me what. Very bizarre.
03-01-2013, 02:56 PM   #18
izzi'smom
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Two things...
First, thickening is often inflammation...
also, has he considered giving an anti-nausea med to help her keep the MRE contrast down? I don't understand why he'll do a CT but not an MRI (both require contrast for optimal visualization of the intestines(?))
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03-01-2013, 03:37 PM   #19
Niks
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Last time she had CT she didn't have contrast?
She takes ondansetron before eating. Not that it does anything and she's had it by IV too, still doesn't really help. My guess is she isn't having contrast?

We have no confidence in this doctor. If she gets any worse taking her to another hospital. Have asked for a second opinion, but still waiting.
03-01-2013, 04:09 PM   #20
izzi'smom
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I work in x-ray, and the best way to properly evaluate the colon is to fill it with contrast (it is similar to the surrounding soft tissues in density; being filled with contrast delineates the interior structure).
Air (obstruction, ileus), stool (impaction) show up without contrast...
If she truly can't keep ANY contrast down I can see why they wouldn't give it to her; but then again, I would question repeat scans in a young female when the quality isn't the best. If she can keep some contrast down (would drinking it more slowly help?) it would add to the diagnostic quality of the study.
I think you are on the right track with a second opinion...it never hurts!
03-01-2013, 04:10 PM   #21
Niks
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Izzi's Mom - your kids are adorable!! Georgeous pics x

She isn't holding down anything...
03-01-2013, 04:16 PM   #22
izzi'smom
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TY!
I don't understand why they aren't pushing to treat the vomiting. Her weight and nutrition will suffer until they do...??? Zofran worked quickly for Izz...hoping you get some better answers quickly. ((HUGS))
03-01-2013, 04:28 PM   #23
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Well at least they are doing something. Although if he is going to write to you about the test it could take up to a week (these things never seem to get done quickly). I believe they tend to just use contrast into the veins when doing a ct scan. Never known anyone to actually get oral contrast except with an MRI
03-01-2013, 04:54 PM   #24
Niks
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She has lost 35lb and still losing. Yes at least doing something. Wondering if other test might be stomach emptying? If it is will show very poor and hopefully get them to look seriously as to why!!

Will keep on their case until done and if any worse will take her to A&E, for dehydration if nothing else. She's been so tearful over last couple of weeks and it just isn't like her
03-01-2013, 05:03 PM   #25
Catherine
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Our gi will not do CT on female patients Sarah's age due to radiation to the ovaries.

Which I find interesting as MRI with contrast are not a approved test for crohns in Australia so are not covered by health insurance (medicare).
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Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
03-01-2013, 05:08 PM   #26
Niks
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What test would they do Catherine?? I don't know anymore what is best for her. We obviously need to know what's going on.

Pretty sure pillcam would not go anywhere as she is right now
03-01-2013, 05:19 PM   #27
Catherine
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Our does the mri we just have to pay for them.

But if the ct will give answers I go with. Your girl is so sick you need to think of the here and now.

I know ct would be done in a emergency situations so the gi think is not to use them for monitoring
03-02-2013, 05:48 AM   #28
DustyKat
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I'm so sorry to hear this is continuing for your girl Niks, bless her.

I hope she is able find peace and relief very soon.

Dusty. xxx
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03-02-2013, 06:18 AM   #29
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Niks, I hope these tests will bring answers for your sweet girl and will lead to relief for her. Hugs!
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03-02-2013, 06:45 PM   #30
Niks
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Thank you everyone, I really hope she gets sorted out soon too, have got home from work, and she looks and feels dreadful.

Her eyes are really bloodshot too, I guess just very tired and constant vomiting not helpful

Hope you are all having a better weekend!

x
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