CT scan - some thickening of proximal duodenum?

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Niks said:
I have news!
Just had a call from Oxford. Jaime is having pillcam by endoscopy TOMORROW! :eek2:

I actually can't believe it!!! We need to be there at 8.00am.
Click to expand...

A-M-A-Z-I-N-G!

Does that mean that they are going to place it with the scope and then let it "flow" through?

I hope it gives you the answers you need!

Cheryl
 
Think everything went okay. 5 attempts to put cannula in for sedation, nearly was going to do it without! Luckily they got a vein.

We got back from Oxford about an hour ago, and she is experiencing sharp pain, which is not her normal pain :eek2:... Really really hope this is not going to be a complication! Urrrggghhhh. She wants to wait a while to see if it settles down.
 
OH! AND what is going on with the new look site? Thought i'd come to the wrong place to start with lol! xx##:eek:
 
Hope her pain is settling!! And that you finally get some answers!



(PS what new site look??? Looks the same to me??)
 
Thank you, she's asleep, so much better! Is the same on my phone but looks completely different on laptop!!! X
 
Hmmm, I can't remember where to find it but somewhere on the site, you have the option to change the format that you view. Perhaps it was somehow changed on your laptop??? If you ask on the Site Suggestions, etc. subforum, I'm sure someone (more techie than me! :eek:) can help you change it back. :)
 
Ha Tess, thank you! You were right, I must have changed it by accident. All back to normal now, really threw me! lol xx
 
Niks,
Glad all went well. Caitlyn also experienced some very severe pain when the camera was passing and it was very painful until it passed. I am unsure why. Maybe scar tissue? How soon until you get the results?
 
Did it make it through? Did she get the camera out the other end? It took us a couple weeks to get the results back... I'm so glad they did the test, but not happy that they didn't prep her first... really?!
 
She had sharp pains on and off, luckily not lasting too long.

Wonder how long it will take to go through her!!! Results will be 2-3 weeks.

The lady was adamant she didn't have to prep Carol.
 
Ours took a day to get results back
How are they going to see the colon if there is no prep,
It took DS three days to completely pass it.
 
Our only prep was no dinner the evening before the test and of course no breakfast the morning of. They were mostly interested in the small bowel and felt a prep wasn't necessary. Of course A tends to pass things super quick anyway. ....
 
She was only allowed a light lunch the day before and then only clear fluids. But that's all!! X
 
Prep is typically not required ... but I wish my son had prep'd. The results were ambiguous because they could not be sure they saw a Crohn's lesion or debris :( in one area. It sounds like Jaime fasted longer than Danny ... I think he was allowed dinner, but just no breakfast.
 
My dd was 9 when she had her pill cam. She couldn't (still can't!) swallow pills well, so got permission to have it in a spoonful of applesauce. It was the weirdest thing to see applesauce with a glowing, blinking light in it!

I was in the background singing the "Magic School Bus" theme song and saying, "seat belts everyone" (for those of you who know the show/books) and musing that this was the most expensive mouthful of anything that she would ever swallow!

Niks, hope your dd is making it through okay and you finally get some ANSWERS!!!!!
 
Sudsy said:
My dd was 9 when she had her pill cam. She couldn't (still can't!) swallow pills well, so got permission to have it in a spoonful of applesauce. It was the weirdest thing to see applesauce with a glowing, blinking light in it!

I was in the background singing the "Magic School Bus" theme song and saying, "seat belts everyone" (for those of you who know the show/books) and musing that this was the most expensive mouthful of anything that she would ever swallow!
Niks, hope your dd is making it through okay and you finally get some ANSWERS!!!!!
Click to expand...

:rof::rof::rof:
I so remember that show!
 
Mz. Frizzle Rocks! We have never done the pill cam but now if we ever have to I will be thinking on Magic School Bus.
Hope you get results quickly Niks. Sitting on pins and needles here waiting.
 
We even had magic school bus here! Lol.

No camera through yet! More sharp pains yesterday but ok today.

Xx
 
Niks just so you don't panic, I never saw mine pass and it's definitely not in there. So not seeing doesn't always mean it's stuck :)
 
The Gi would know if it was stuck once they review the photos .
The camera stops working after 6-8 hours.
The minute she took off the belt the data was sent to the docs file to review.
They can tell from the photos if it exited the small bowel because after that it is no longer an issue.
Hopefully they will review it soon even if you don't know the results.
DS has slow transit but from the pillcam we found out his small intestine has a normal transit time . His large intestine however is the slow area.
The pill can left DS 's small bowel in about 4-5 hours per the Gi but he didn't pass it for two to three days I think. ;)
 
Just catching up Niks. :ghug:

So hope the pill cam gives you guys some solid answers and direction! Good luck!

Dusty. xxx
 
Hoping all goes well...and normally for Jamie.

A note from one of us for whom it never goes normally...still no worries. The purpose of the pill cam is to obtain information. Valuable information can still be obtained if the camera does get stuck.

Gus has had the pill cam twice. Twice it was stuck...and we didn't know it at the time because it didn't alter his symptoms our cause extra pain.

The first time the doctors thought the 4 hrs of images were the camera making it's way through the small bowel and did not see signs of inflammation. Meanwhile it was stuck in the beginning of a 35 cm stricture section, and the images were mostly of the same section, over and over and over and over. Gus started to have pain about a month later and an x-ray revealed the camera was still inside. Still...VICTORY! We finally knew that there was a stricture and they removed it. That episode sent Gus into his first period of peace in five years.

The second time it got stuck in the duodenum. Again 4 hrs of images of the same section over, and over, and over... This time the images showed a huge amount of inflammation, so the doc decided to follow-up with a scope. It knocked the GI docs socks off when he found the camera lodged in the duodenum. He removed camera right then and there (without surgery this time) and found nasty stricture section in the duodenum. Result, surgeons created a bypass where the food could go directly from the stomach into the small bowel.

All of this to say that even in a worst case scenario, where the camera does get stuck, you will still get answers! :hug:
Cheryl
 
Jaedyn poo-ed into a hat until she found her camera, but it didn't take long. No slow transit here. She still poos 2-3 times a day...
 
CarolinAlaska said:
Jaedyn poo-ed into a hat until she found her camera, but it didn't take long. No slow transit here. She still poos 2-3 times a day...
Click to expand...

Maybe we should clear up for those that don't know, that a "hat" is a type of bowl that sits inside the toilet so the nurses can measure your output. Had I not had my surgery in September I would have been really alarmed by your statement!:rof::rof::rof:
 
Thanks everyone.

TBH Carol - I did wonder!!! lol. Made me chuckle.

She has no results, but wasn't expecting anything just yet. She hasn't seen camera, but maybe has passed it - who knows!

She does have a few new things. She has been complaining of a horrible taste in her mouth - she says it 'tastes like copper'.

Also her knees and wrists are really achey :eek2:

Hmm. Just hoping for something to come up so that we get to the bottom of all this!
 
Just to be safe...If she doesn't know for sure the camera has passed within a week, have an x-ray done to be sure. Quick. Simple. Efficient. It will either show-up on the x-ray or it won't. When Gus' camera was stuck, it looked like he swallowed a flash drive!

Actually, that is how we found out about the Kondremul oil. The docs thought it was in the colon and that the oil would "lube" everything and it would move. It didn't. The camera was actually stuck in a corner of the small bowel that butts up to the corner where the transverse and descending colon meet. Ah...memories! LOL

Take care.
Cheryl
 
:rof::poop:LOL, Jaedyn loves hats too much to poo in them! This hat was a special pan that fits under the toilet seat to catch poo and pee samples for the lab! LOL!:poo:
 
Omg... this is the longest post ever in this a forum. FYI I only know bits an pieces to date because I can by no means backtrack anymore. It is too hard to read through all of it. Niks do you think you can give me a refresher, I lurk and I do think I know where you guy are but I am not sure what they have ruled out verse what they think is going on exactly now. Verses what you think is going on.
 
Ok Mary. Lol, it is a mammoth thread!

Colonoscopy and Endoscopy clear. MRE clear (after 6 months of steroids). Endoscopy biopsies in Swindon showed characteristics of Coeliac Disease, but Oxford have never seen any of this. Completely gluten free, no difference in symptoms.

Vomiting lots. Abdo pain still bad. Constipation. Often vomits blood, pees blood and poos blood! Has recently had kidney stones. Weight has dropped 57kg to 47kg

GI's diagnosis IBS with Visceral Hypersensitivity.

Bone Density scan spine score -2.9 Osteopenia, diagnosed earlier this month, but this is actually Osteoporosis score.

So now after such a long time she now has had pillcam. Her GI is 'convinced' it will be normal.

Today her temperature is 39 degrees. Grrrr. She is feeling really rough. Probably a virus, but for goodness sake!!!! Just wish she could have a few days of feeling better!
 
Niks- Have you seen a Rheumatologist yet to rule out some sort of autoimmune condition? I know that many of them affect the kidneys. We are just beginning to look into this for A but it seems like your daughter may benefit from someone other than a GI's perspective. I think GI's tend to like it in the box and Rheumatologists/Immunologists think outside the box a little more. Our girls definitely don't fit in any box!!
 
DanceMom - she doesn't have a Rheumatologist, but she has started to complain about her wrists and knees aching. I do think this may be the way to go, especially if her pillcam does come back clear. xx
 
Hi there. No! Nothing, not at all surprised! Am a little concerned though, she has started peeing blood again and Urologist is adamant that she has no more stones! Hmmmm. What else could cause this?

:eek2:
 
So, what does the urologist say is the cause of the hematuria - that is his territory... How about a bleeding disorder?
 
Nothing from Urology or Gastro. She's called GI secretary today. She's feeling dreadful, lots of pain, vomiting and feels drained, but has been losing mucous and blood without BM.

Secretary said pillcam pictures not been reviewed yet but would talk to GI and call back. She didn't :ymad:

We are both running out of steam. It's her birthday on 21st. Wanted to take her to Winterwonderland in London, but she's too worried about booking anything in case she's not well enough. :(
 
Its my daughters birthday on the 21st as well, though she is a wee bit smaller!
I always tell her the most special people are born near christmas.

I hope you hear something soon.
 
oh niks I feel so ashamed of the NHS over this sad episode unbelivable you are still waiting for answers love to you both
Katie
 
It is truly shocking how they have treated her. Hope she phones tomorrow! Did you ever hear back about seeing a specialist in London?
 
niks I think pill cam stuck passing blood and mucus says to me empty gut from obstruction down, if her abdomen starts swelling get her to hospital and don't leave till they xray, she needs to ring again tomorrow.
 
Ok. Thanks everyone. She doesn't want to 'bother them'! But I sure as hell will if things aren't better tomorrow!!! Xx
 
I know it seems like, "ugh! another problem," but if the camera did get stuck, then that means she has a stricture (or something like it) that the doctors have missed all along...and finding it (even this way) is a GOOD thing. :)
 
GI finally called Jaime back today. Still no pillcam results but he thinks she is really backed up and the bloody mucous is overflow.

He has told her to do a citramag, which she has just done. Hopefully will get things moving, we were thinking it might be a plan!

I think her B12 levels may be getting low again as her fingers are going numb a lot. This is how it started last time. Her weight is dropping too, so she is going to start taking fortisip again.
 
Oh and she finally got an appointment at the pain management clinic on 25 February 2014!!! Great
 
Interesting..no x-ray, but treating for being backed-up, without really having any idea as to why she is backed-up. Hmmmm.
 
I agree with vtfamily... at least get an x-ray before pumping the poor girl with more meds that may or may not be helping her.

And still no sign of the pill cam coming out?
 
Have you thought of compiling all the history---lack of progress etc---and send it to the Minister of Health with a copy to Mr Cameron.
 
I don't think Mr Cameron or the health secretary Mr Hunt give a monkeys. They are wealthy men who would use private health care if there was a moments delay in their care.
Their main aim it seems, is to destroy the NHS and let their cronies who own massive private health companies take over the easy bits, leaving the more complex work to the NHS (with no money to do it with).
 
It did work thanks Carol. It certainly helped with moving everything, no camera seen, but she may have passed it already? But as Dr told her there was a fair amount of blood. She is still losing mucussy blood too :eek2: I really don't know! But at least if she was really backed up, things have now moved!

Writing to Mr Cameron! You guys are amazing! I do agree with Littlemissh that he wouldn't give a monkeys! Hopefully instead something will come from pillcam results (eventually)! The Dr who called Jaime back is just lovely and said that the results are still being read as they are not on the system. He will keep an eye on this for her. Her actual GI doesn't think that there will be anything to see! So we will truly be back at square one if there isn't. That is when we will get him to refer to London.

She was getting really bad back and abdo pain before the citramag. The back pain has now eased right off. The back pain is worrying me with her recent bone density results!

Some good things too. Her vomiting has eased right off! A couple of days with no vomiting! This is strange to me if she was really backed up? On the flip side of this her appetite (when vomiting she is normally really hungry) has almost disappeared! She just doesn't fancy anything much.
 
So, I haven't read every post, but I did have a thought and some questions. Did J have an upper endoscopy and if so, what did it show? Has she been on acid blockers prior to endoscopy or at other times?

Has anyone ever suspected Z-E? Zollinger -Ellison syndrome, it's very rare, but causes similar symptoms to what she's experienced.

Signs and symptoms of Zollinger-Ellison syndrome may include:

Abdominal pain
Diarrhea
Burning, aching, gnawing or discomfort in your upper abdomen
Acid reflux and heartburn
Nausea and vomiting
Weakness
Bleeding in your digestive tract
melena-tarry stools at times
Unintended weight loss
Decreased appetite
Anemia

It's also associated with B12 malabsorption

It can also be associated with other endocrine abnormalities that cause kidney stones. It usually occurs at an older age than J and ulcers are often seen in the stomach or duodenum but can be limited to the jejunum where scope can't see them.

A fasting gastrin (blood test) is a noninvasive test to begin to look for this.

Also-- is there any family history of any unusual medical conditions?

It is extremely rare but I thought given all that J's been through, worth considering.
 
Thanks for checkig in Pops, she's pretty fed up. Still suffering from back and abdo pain. Her vomiting is not too bad, which is good, but her appetite is poor.

Rectal bleeding has settled but she has been peeing pink on and off. Urrgghh, she is just fed up with Doctors and Hospitals so at the moment just trying to muddle through.
 
Oh poor lass, get back on to GI for results of pill cam, she must be getting so run down and as she is still getting blood in urine contact uro again don't let it rest. Is she having bowel movements now did laxative work, I think its time you got her to go to GP and get him to refer her to London, Prof Forbes at UCL sees my sister he I think was at St Marks he really is top Dog in UK gastro lovely man and has very good team.
 
Have called Urology, The Secretary has e-mailed the Doctor, who is surgery all today, but she said they will get back to Jaime as soon as possible.

Last week when Jaime called Oxford she was told they would contact her as soon as any results were through! Hmmm, how long does that take?

I agree though, if nothing shows on this she needs referring to London.

On a completely non medical note, Jaime has noticed the same car following her several times over the last few weeks, yesterday he followed her from work to home. She is so scared. She called the Police, who have given her a crime number and are going to come and see her today. This morning she had a note on her car saying 'Don't be scared, I'm friendly'.

Poor girl, she really doesn't need this. :yfrown:
 
Spelling.....I can't do it. :)

Ummmmmmm......................................................
Do stalkers ever think their unfriendly?

Can someone follow Jamie (other than the bad guy) and hopefully get the license plate number?
 
Last edited:
She has half the plate, so hopefully he can be found! She knows the make of the car too. I think this will be enough for the police to work it out, but scary huh! :(
 
Sorry about the stalker ... that is scarey. Is there a police station nearby that she could drive to if followed again? I wish he did not follow her home.
 
The nearest Police Station is a 20 min drive away. The Police have advised her to drive somewhere close, where she knows people are home. Also not to drive anywhere remote. If I'm at work she is going to go to her friends or Dad's house.

I am going to talk to my neighbours too, they are pretty nice, I am sure if she was scared, she could go into one of their houses until someone could pick her up.
 
Is it at certain times of the day? I mean if he lived in the area the note should have read, I'm not following you I live in the area.
Yes, the fact that he knows where she lives is scary.

HUGS
 
Last night it was around 8pm. He doesn't live around here, but Jaime has noticed his car before following her, but she just thought it was coincidence. Hopefully once the Police get to talk to him he will leave her alone!

It really isn't good that he knows where she lives :eek:
 
She has to go to the Police Station this afternoon at 4, we will see what they say!

She woke up this morning with much worse abdo pain. She told me she hasn't had a BM since she did Citramag last week!! Urghhh. She will have to do another one tonight, but have told her to call Oxford.

She doesn't think the camera could still be there as the citramag did work last week, however I think watering everything down could just get it passed the camera if it is lodged? What do you think? I really think she needs xraying to at the very least eliminate that possibility.
 
definitely x-ray its called overflow and you are right citramag will have softened it so it might pass by it, just had coffee with my sister who has adhesions causing stricture when she obstructs she feels as if the meal is still in stomach like she has eaten a brick at worse she vomits back meal like Jamie and has bad abdo pain. get her to call Oxford and have x-ray.
 
I second pops. Call and get her an X ray. she could be obstructed and overflow just passing around it. Good luck at the police station. Hope everything gets resolved quickly with that.
 
Good grief Niks! Just what Jaime doesn’t need on top of everything else! :( I hope the police can get it sorted.

I agree wholeheartedly, get an X-Ray done, you need to be sure that the camera is out.

Good luck!

Dusty. xxx
 
You'd be rich now if someone started with Jaime's story when it all started and followed her with a reality program. She'd probably have a lot better care too since the hospitals wouldn't want the world to know how much they put her off! Now with the stalker... sheesh - it's a soap opera!
 
Police have been great, as have neighbours. If she sees him she calls 999 and they have her on high alert so she only has to give her name, all details come straight up.

The police showed her a picture of him! So he must have form and they said they would pick him up. Not sure if they have or if she'll be told if they have.

Otherwise nothing! She has a new gastro appoint for MARCH! Really! Surely they can't leave her that long for results. She did have 1st BM without citramag today, so I guess that's good.

Just so frustrated with it all. God knows how she feels
 
Just keep ringing gastro secretary for results be a pain think NHS motto must be " He who shouts loud enough get the attention"
so pleased the police are being good must have form if they have his mug shot creepy.
 
I understand that it does take several hours to review all of the images from a pillcam. We got our results the very next day. This seems way too long.
 
Two weeks is plenty of time to review the images from the pill cam. I'd call every day until I got answers. That's ridiculous.
 
Niks,
I second the gang. They are taking way to long with those results. Please keep calling and bugging until they get them to you.
 
Will call tomorrow, and keep trying, but my guess is that they are clear, or they would have let us know!?
 
This just doesn't make sense! March! I thought you wouldn't get an apt. right away (because they've screwed you over so many times), but March? My mouth literally dropped open when I read that.

What about a sit-in at their office? Can you start paperwork for malpractice?


Kimberly
 
It's time to consider a move out of that blasted country to a place where your daughter won't be ignored. Do you have any relatives that live elsewhere who might help?
 
Hi niks,
What sort of Christmas did Jamie have did she keep anything down? last xmas Louis was on NG feeds so rough for him now eating for England as on infliximab . x
 

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