CT scan - some thickening of proximal duodenum?

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I hope she can hold some down. This is serious in my opinion. The ulcers show definate inflammtion and acid. I getthem too but they said I have too much bile acid. That is why I take the questran and for D. It works most of the time. But Jaime it would not help with her motility issues.I just wsih I could think of something that everyone is obviously missing. Does she have her gall bladder?
 
Hi Niks ... do not like the additional symptom of "She has been getting chest pain and is really out of breath even climbing the stairs". Has she seen the cardiologist yet? Do you have a heart rate and blood pressure cuff at home?
 
Niks,
I have to second Danny's mom on this. Chest pain together with her fainting issues points to a cardiac issue in my opinion. Call her GP and tell him about the chest pain. I know the pain could be related to the vomiting. (Acid reflux) but still until cardiac has been checked and ruled out it must be looked at and checked out now. Cardiac must always be looked at as it can be the most serious.
 
She has an appointment with Consultant tomorrow, will make sure he is fully aware of everything that is going on! I think it probably is heartburn, or reflux. It is just a new thing for Jaime :eek2:
 
Just thinking of you and Jamie. Hope all goes well tomorrow (today) at appt.
Sending lots of hugs and support your way. Glad you were able to get away for a little while and hope the next time you both are able to get away she has loads of energy and is feeling fantastic.
 
Thank you Jacqui.

MLP - No, but that's a good idea, will take some. She still has a fair few so can show GI today x
 
Good with the consult today Niks. :ghug:

I hope more than anything you are able to get some answers or at the very least direction today.

Just something to keep at the back of your mind hun. If they still can't find anything, and symptoms continue, for those that do end up with a diagnosis of IBD it is not uncommon to have EIM's well before the intestinal evidence shows up.

Good luck! :goodluck:

Dusty. xxx
 
We were in consultation for 2 hours. She IS having colonoscopy and endoscopy. If nothing shows on those she'll have pillcam.

He checked her thoroughly and does not think she has any worries about chest pains.

He also does not think she has coeliac disease!!!

They have a plan for if she needs admitting, which will be on her notes, and he's referred her to the pain team!!
 
Wow, that's sounds a much more positive appt. When is she going to have the tests? I hope this means you are on the road to solid answers. :hug:
 
I am soooooo happy to hear it sounds like they are finally taking things seriously. Will keep her in our thoughts and prayers that she finally gets some answers!
 
Wow. Here in the U.S. right away means today, tomorrow or in a few days. So I'm surprised that right away is in a few weeks.

Hope you get some answers very soon!
 
I hope you get some answers soon. I was thinking the same as xmdmom, in Canada right away means within days. Hopefully it will be quick and they will figure out what the hell is going on. (((hugs)))
 
I hope this heads everything in the right direction and they can get J to feeling tops real soon!!!
 
Well, it's about time someone started listening to that poor girl!! Though I'm not sure if I hope they find something or not...? I wouldn't wish this disease on my worst enemy, but she's been through so much. Some sort of dx would be kind of nice.

Good job hanging in there, Niks!
 
Niks, I am so glad for the good consultation, and glad for the plans being made. Let us know when it gets scheduled. I am afraid that she will get sicker between now and then and that a hospitalization will mess things up again. I will pray that it won't. I want to be praying for her prep - so let us know when that will be. Thinking of you both.
 
Thanks everyone.

Kim it was with Oxford Gastro.

She has just missed a call from them! (no message, why do they do that!?)She called them back but can't get hold of anyone. So waiting for another call. Maybe about bloods but hopefully about appointment for procedures.
 
Still no call back, so not sure what is going on there, but she has a letter from Oxford with date for Endoscopy and Colonoscopy!

Next Tuesday! I can't quite believe it!!!
 
Woohoo!! So glad to hear that the tests have been scheduled!! How is J doing day to day right now?
 
Was expecting to wait at least 2 weeks but he did say asap!

She's struggling with pain, and unfortunately started vomiting again! GRRR. Thought that was behind her. She can't walk any distance at all, is just too painful and just hard work, she is so slow!

But hey, at least she now has some proper tests in the pipeline, and very soon! :dance:
 
Is she eating much? With the clean out coming up and the doctors thinking she gets backed up have they discussed a diet up until clean out or possibly a longer clean out to ensure everything is evacuated? Of course, poor thing if she is vomiting again, she probably hasn't felt much like eating.
 
No diet discussed! I do think she'll need to double up on the citramag. She has plenty at home and they've sent her more.

She's going to love that bit!
 
So glad she is finally going to have the scopes! I pray they will give you some real answers! :ghug:
 
Niks said:
Still no call back, so not sure what is going on there, but she has a letter from Oxford with date for Endoscopy and Colonoscopy!

Next Tuesday! I can't quite believe it!!!
Click to expand...

Have you started prepping her? How's it going?
 
Thanks for asking Carol.

Well, instructions were for today no fibre and tomorrow clear fluids and then 10 senna at 2pm and citramag at 4pm and 7pm.

But because of her history, she started clear fluids only today and had a citramag this afternoon. Had a couple of pretty hard BM's but hopefully tomorrow things will start moving properly.

She has had an appointment through for bone density scan on 21st too! Seems like all happening together!
 
Thank you!

Her scopes are Tuesday Dex, we are just trying to make sure she really is cleared out!
 
Wow. I am new here and I started reading this thread over an hour ago and just could not stop.

My heart goes out to both you and your daughter. I truly cannot comprehend the lunacy of what she has been through, and the rotten medical care that has been given. SO GLAD that you are hopefully near finding out the real answers here so she can finally get on with being a 19yo and live a normal life again.

Praying that Tuesday brings answers. Hang in there.
 
Hi Sudsy. Thank you! I really hope so too.

You look like you've got it pretty hard with 3!

Glad you found us. As you can see there's so much great advice and support on here xx
 
Just wanted to pop in and wish a big good luck for tomorrow. Keeping my fingers triple crossed that they find some answers! Sending you both hugs!
 
Scopes went okay. She said it was really painful, but they said the clean out was good. They managed to get all the way to the terminal ileum. Nothing seen! Have taken biopsies.

I have been looking and can't work it out, so if anyone else can help that would be great! If they got to the terminal ileum did they see inside small bowel?

Hmmm.. Just worried that if really nothing showing that they'll go back to IBS diagnosis without pillcam test. Really hope not!
 
They can usually only go a little bit past the TI if they can get through so no wouldn't answer if there are problems in small bowel and would need a pill cam.
Hope biopsies come back quickly.
 
Thanks for the update Nik ... still push for the pillcam as there is still lots they have not seen in the small intestine.
 
I can't remember now, has Jamie had an MRE? An MRE will also provide an image of the small intestine. I believe a pillcam will provide clearer/more exact pictures of her small intestine, however, the concern with a pillcam is if she has any narrowing (which can be caused by inflammation or scarring), the pillcam could get stuck. There is a dummy pillcam available - from what I've read, it is slightly bigger than the real pillcam but will dissolve after a period of time if it gets stuck. The assumption being if the dummy can go through without a problem, the real pillcam should be fine. :ghug:
 
Glad to hear the colonoscopy has been done. I was wondering about the MRE as well. I think the pillcam would be great but if any of her issues deal with motility or stricturing then there is a chance the pill cam would get stuck due to that, hopefully a patency pill(dummy pill) will be offered first.
 
There is a downside to the pillcam in addition to the risk of retention.

It only records what it is pointed at and the speed with which it transits the small intestine cannot be controlled.

We did pillcam twice with Badger. The first time it went through the duodenum so fast they couldn't see anything. They did see some mild ulceration in a couple of frames farther along but nothing severe - nothing as severe as what was really happening.

The second time the capsule got stuck in the jejunum somewhere and sat there for 6 hours so they got very little. The one image they did get that was significant showed a small bleeding ulcer.

This was several years ago and the MRE was not available. The test that finally revealed the extent of his disease was a small bowel follow through.

If she has not had an MRE I strongly recommend that be done along with or instead of a pillcam. It is much more comprehensive and, in the hands of skilled and experienced staff/radiologist, is a very effective diagnostic tool.

the key is to get it done at a center that does them frequently so they have the experience necessary to conduct the test well and accurately read the images.

And reaching the terminal ileum implies that they were able to see a small section of the small intestine but probably only 10 - 14 cm. In order to see the TI they have to get the scope through the ileocecal valve (ICV) that controls the passage of food from the small intestine into the large intestine. Then they must make a sharp turn - sometimes so sharp a turn it is a u-turn and advance the scope as far as possible. If there is swelling in the ICV or TI they may not be able to get into the TI at all.
 
hi great the have done t scope this way , but I thought jaimes original thickening was in small bowel so see what endoscopy finds or better still a pill cam , if I am honest I didn't expect them to find anything , sound more like jaimes problems are higher up god bless her , 1 done now 1 to go , big hugs xx
 
I'm really hoping you get some answers with the biopsies! A's scopes looked great visually and her biopsies were rather confusing. The MRE was iffy but the pill cam basically solidified the diagnosis for her. Sometimes you need to use all of the possible resources to create the best picture of what is really going on.
 
Jaime did have MRE back in March but was after 6 months of solid steroids. It was clear!

I think they would do dummy run first as she does have exceptionally slow transit! i am guessing she would need to do clean out again? Appointment on 17th, don't think we'll know anything until then! :-/ xx
 
We did not do a clean out for the dummy pill. We weren't really worried about the pill getting stuck, just whether or not she could swallow such a large pill. For the actual procedure we did a modified clean out. The day before she was allowed only clear liquids after a light lunch and she was to take 1 dose of Miralax in the evening. But A has record fast transit time so your girl may require something a little different.
 
DS did a clean out but they just placed his during his scope so that made it easier. WE also did not do a dummy pill since DS had been passing clumps of ASACOL HD ( close to pill cam size).
He had no issues.
 
I would recommend a clean out. It is not always required. Danny was not instructed for a full clean out and in some pictures the dr could not distinguish debris from early Crohn's ulcers. I wished there wasn't so much debris.
 
J's scopes showed hardly anything. The MRE showed nothing. The pillcam was the one that showed ulcerations throughout. She had to do a full clean out for it too (9 days after the original cleanout - poor dear!). Don't lose heart. How's Jaime doing now? What about the proximal duodenum? Did they do an upper GI scope too or just the colonoscopy?
 
Hi Niks, So do you have to wait now for the results of the biopsies, have they indicated to you what will happen next. How has she been since the scopes? Thinking of you xx Steph
 
Yes waiting for biopsy results and I guess we don't really know what else is going to happen or when until 17th :ybatty:

It is a little reassuring to know that other people haven't got answers easily either.

Thank you for all your messages.

Carol - she's getting pretty fed up with the constant pain. Also she's been vomiting again :stinks:
 
Niks - I just read through this whole thread and cannot believe you and your poor daughter have been through! Like many others, my daughter's scopes looked ok (a little red in the TI but nothing too bad) but biopsies showed inflammation in her stomach, terminal ileum and colon, even though she had been on low dose prednisone for her joints for a month before the scopes. Don't give up hope!
Good luck!
Maya
 
If she does the pillcam definitely request the dummy pill first. I did the dummy pill and it got stuck in a stricture for about a week before it finally dissolved. It is much better to check first to make sure it will make it all the way through. Good Luck :)
 
Sending you all the luck in the world Niks that you and your lass get some solid answers!

Thinking of you both. :heart:

Dusty. xxx
 
Seems strange to me that it would hurt but they can't see anything. To me it hurting suggests she is really sore, which we would think so anyway with her being in so much constant pain.

I have heard before, on here I think, about how inflammation can be on the outside of the intestines so doesn't show as much in scopes/pill cams etc. But then you would think that would show up in a scan??

Hope the biopsy gives you a clue!
 
Holly, she had the CT Scan last year but no other scans.

It's funny you should say that though, because when she was younger and had laparoscopy for suspected endometriosis she had an inflamed bowel. Seen obviously from the outside. I have mentioned this at appointments but they don't think it's important!
 
Errrrggghhh - black vomit! That's new and not at all happy about that. She says she doesn't feel too bad.

I guess if it continues will call GI. Hopefully will stop!
 
Oh man Niks...:(:(:(...I hope it is a one off, poor love. :ghug:

Thinking of you both! :heart:

Dusty. xxx
 
No - her inflammatory markers are always normal.

The only bloods that are not normal are ferritin (9) and B12 dropping Last count was 153.

She is now vomiting pretty much everything again :eek2:

Good idea though Holly, will research

xx
 
Did you every find out if they will check the biopsy's for eosinophil's?
If they do, even if they say the numbers aren't high try to still get the numbers.
 
FW - I don't know, I did e-mail to ask but didn't get a reply. I hope that we'll get results of all the scopes and biopsies when we go on 17th
 
I can't believe they just blow you off like that Niks. Would they send the results directly to Jaime?
 
I am sorry this nightmare has not ended.....

Another vote for "wait for the biopsies". My dd's most recent scopes showed many problems and many sites that were okay. Until the biopsies came back, and then many places that we thought were okay were moved into the problem category.

Has her vomit been tested for blood? I would definitely have her throw up into a bucket and take it along to the doctor's office. These things must be documented.

May you soon have answers and a return to good health for your daughter. Hang in there.
 
I have to agree with Sudsy take a sample of the vomit to the doctor. Black vomit sounds like blood. It could just be her esophagus getting irritated but it needs to be checked out.
 
No her vomit hasn't been tested. If she vomits black again I will get her to get a sample.

To be honest I don't think anything will show on biopsies but will find out on 17th! I really don't think we'll get any results before that.
 
There is no point checking vomit for blood as most vomit contains small amounts, but the quantity cannot be determined. It is therefore not done (not in the UK anyway).

A good quality picture of any black vomit is however a good idea so that it can be shown to the GI and ask him what he thinks.
 

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