CT scan - some thickening of proximal duodenum?

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They are redoing bloods today. J's potassium was 6.8 on Monday. I don't really know what they are supposed to be! Monitoring 24 hours to see if anything stays down. keeping an eye on blood sugars.

they want to stabilize her. Aiming to re do colonoscopy early next week.
 
Niks I think normal potassium levels are between 3.5 and 5.0 and as far as I know or have been told in the past by Docs its considered dangerous when levels are above 6.5

They will hopefully be giving her potassium through IV drip
 
I don't know!! Will check but would it be to counteract?? Am not at hospital yet, will find out
 
She has potassium chloride and sodium chloride IV. The nurse has assured me that is right for high potassium !!
 
Niks, just catching up now :cry: I can't believe what you and your baby have been through! :ghug: I'm so sorry that she's gotten to this point but am so glad that she is finally being looked after properly!

She is so lucky to have you - you have been incredible for her!

Lots, lots of hugs!!!! :ghug: :ghug:
 
Thanks Tess! You're very kind...

Hopefully we will finally work out what is going on!! One of the gastro team thinks her stomach may not be working at all and possibly food that is getting through is literally falling through!! :eek2:

That doesn't sound great. Not sure how they'd sort it out!! Hoping he's wrong on that!!
 
So glad they are keeping her in and helping her at last. I have been worrying about it all the way up in Scotland - was even ranting to my mom about the bad treatment your poor girl has had!
 
I'm so relieved that she is in good hands now. It makes me want to cry with relief! I'm sorry she isn't completely better yet, but so glad that she isn't being blown off anymore and she is in capable hands!
 
Thinking if you both Niks!
I'm so glad she's finally getting some help and paying attention !
That has to be hopefully helping her spirit a bit, now that they finally believe her!
:hug:
 
She had another really horrible turn this evening, where she felt she could breathe and had really tight chest. Lots of running around from nurses and doctors paged! Calmed down after 30 mins but pretty scary for her!

Her cortisol levels are 'really high' didn't give me numbers again!!

They are still putting IV potassium chloride through and have changed both her IV's. New ones seem more comfortable.

No food at all kept down. One Doctor told her earlier that it is possible her stomach isn't working at all and the only food that is going through her is 'dropping down'! This sounds difficult to treat!!!

The plan for tomorrow is to insert feeding tube and at the same time do a camera test into stomach.

Thank you all for your kind words, support and suggestions! And yes our local hospital are going to get another letter, to add the the previous one about her appauling (lack of) treatment!!
 
Awww...Niks I hope they can get to the bottom of everything quickly and get her to feeling better. I am so glad these docs are paying attention and on their toes to help your sweet baby!!! Hope feeding tube and stomach test goes well and a peaceful night, also!!
 
I hope you are all getting a good rest and that answers can be found soon. It sounds like Jaime's stomach works fine backwards (all the vomitting), perhaps it is just flipped upsidedown?! Just kidding. I hope she starts feeling better quickly.
 
Glad you will be writing another letter, I would go so far as to send a copy to the health board as well. That GI you saw could do with being told off properly as well.
Hope she doesn't have any more funny turns today. Glad the new IV's are working better.
 
I know it sound horrible Niks but Grace might get a g-tube in the stomach (I hope not) but once you see her start to put on weight and start to heal it will be worth it.
Have you asked what they can do to get the stomach "working" properly?
 
That's what they are trying to work out!! They've told her she needs to stay in at least two weeks, possibly longer because nothing is straight forward.. Just glad they're trying!!
 
It really sounds like they are working hard to figure out what's going on and what needs to be done! I hope the worst is absolutely behind you and J. It's taken her a while to get to this point, so might be a bit of time before she's well but, hopefully, she's very much on the road to recovery!!! :ghug: :ghug:
 
I've been following all your posts Nik and just want to say I'm glad your daughter is finally getting the help she needs I can't believe it had to get to this point for her to be seen as a priority! I really hope you get some answers soon, thinking of you both
 
No scope yet! They want top consultant to do it!! Looking like Monday now. She has had enemas day and night since being here and although not her favourite, seems to be getting her moving! She only ever had one at other hospital..

I got potassium wrong.. Her levels were low!! So not sure where she got 6.8 from!! Her vitamin levels were really low too, so having a neon green cocktail put through IV to supplement! She needs 10 days worth. So you were right Carol, think we had crossed wires with nurse.

She looks so much better!!! she even held down a little breakfast! It's a start!
 
I have also been following the posts Niks and this looks like the first bit of progress so far. Brilliant and may it continue until your daughter is fully fit again
 
Such a relief she is in the right place to get help. Glad she is looking a little better. After all the rubbish treatment before, getting the top guy sounds like a good idea!
 
Hi Niks,
I just had a chance to read through and catch up. I am so crazy busy lately that I barely have time to get on the computer. I am so glad she is finally being taken care of.
I thought about maybe her having gastroparesis. Whatever she has hopefully they can figure it out quick and get her on the road to recovery! I hope you send a very strong letter to that other hospital. It is unacceptable in this day and age that they would treat someone this badly.
 
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Things are sounding better! Hope she continues to improve and so glad they are doing their best to figure things out!
 
Hi Niks!

On your question regarding what if the stomach doesn't start working again, what do they do... I don't know that I've ever heard of a stomach completely stop working. I think there is a lot of testing that will take place in the next two weeks to figure out what is actually happening. Perhaps her stomach is just sick right now and has been sick and malnourished for so long that it needs a rest and medical attention, then will start working right again.

That said, there is something called a J-tube that is like a G-tube but it goes into the jejunum instead of the stomach. This would make more sense if the stomach isn't working right. There is also an NJ tube that goes down to the jejunum through the nose and stomach that is more temporary.

Have they ruled out small bowel obstruction? Don't believe everything that the residents and junior docs tell you, wait to hear it straight from the big guys. You might hear lots of theories before they get down to the real answers after they do the testing.

I'm so glad to hear she is improving a little. I hope breakfast went through...
 
Carol - I know. Think some doctors think out loud. Am more encouraged that she did hold down a few mouthfuls of breakfast yesterday, but that was all! She has held down the odd small thing over last few months. She didn't seem to feel so bad yesterday although her pain was worse.

She is being given the enemas as she was very backed up. She can't believe that she's going so much after nothing for so long!!

She's nil by mouth right now, just in case he can fit her in today. Let's hope so, but if not will be Monday
 
Who is Nike lol sorry ink

Hey Nik and Jamie , I so hope they scope he ASAP and then at least u can get some answers as to what's going g on I the I side , she will get get just stay positive it's horrible what I've had to go through a dim so glad the docs are taking note now as to how sick she has been ,Lordy doctors make me so mad sometimes . Sending hugs to u both and Lewis says hi Jamie lol think he has a little crush he's like that with my friend she's blonde and gorgeous to .xxxxx
 
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Jaime didn't have scope today! The consultant came to see her and is going to leave it 'til next Wednesday!!! Poor Jaime, not a happy bunny, she was not expecting to even be there next Wednesday. Had some truamatic moments, when she begged to go home, sobbing her heart out!!

He thinks where she has been so backed up it is going to take some time to clear her out and wants to do this before doing any procedure!

On the plus side she at a little lunch and kept it down, and a little dinner too!!

Not a huge amount but has not been sick at all today! I can't even remember when that happened! :dance:

I guess clearing out her bowels is really helping!! It could be that simple! I guess they have to work out why her bowels aren't moving properly though..

Feeling more positive that it is something that can be sorted fairly easily. She is still having enemas twice a day. She is having more abdo pain, maybe just things moving through??
 
How wonderful that she is keeping some food down. Hate to hear she has to wait until Wednesday for the scope, but hopefully she will be good and clear by then.
 
Glad she is keeping down food
Sounds like you have a good plan plus waiting on the scope will let her body be more stable during the scope.
 
I think that's good that they're waiting to do the scopes to make sure she's cleaned out.
But why are they letting her eat ?
They could get her cleaned out so much faster with no food of course.

Either way, so happy she's finally getting some help ! :hug:
 
Gee T! You gonna starve the poor girl til next Wednesday? :)

That's the most positive you've been in a while Niks! Good to read that. Hope it continues!
 
Jaime STILL hasn't been sick!! So wish she'd had these enemas for a period of time before!

She has kept down breakfast for the third day!! :dance:

I actually can't believe it :emot-waycool:

So probably not so much a problem with her stomach after all, it just didn't have anywhere to go because she's been so blocked up!

Anyone else have similar problems? Wonder how she's got so blocked up and what could cause this??
 
So pleased to hear sickness has stopped and managing to keep food down.

Cant really answer about being blocked up, i am sure somebody will be along and be able to answer.

My son does suffer with constipation and currently on 6 x movicol a day to keep things going, and currently this seems to be working.

Hope she has a comfortable weekend and carries on feeling better, and that he gets the answers you need.

Take care both of you x
 
Grace same problem but not like J.

Grace would get so back up she would vomit bile.

Grace is on miralax and senakot to keep things moving. That's even with EEN.

I wonder if J has a mobilities problem. A part of her track has stopped working.
I'm sure the docs are going to look into that.

HUGS, I'm glad she's doing better.
 
Ds was blocked up - had chronic vomiting etc due to crohn's
Daily miralax for two years.
Once on the right meds - no more constipation
 
Doctor today was so happy with Jaime's progress!! He has reduced enemas to once a day, and changed her to oral supplements (to trial), and trialling dropping IV glucose and saline.

The dietician has given her different build up drinks called fortisips. They are much smaller and she has managed to keep one down today. Think Ensures are just too much for her at the moment.

Has had a couple of wobbly moments when up on her feet, but generally seems to be doing well!
 
I'm glad things are moving and that she's keeping food down. I'm sorry she is so unhappy about being there longer than she wanted. Doesn't she see this as a way to get better so she can get beyond this point in her life? I hope that now she is starting to improve that her outlook on being there is improving... Hugs to you both.

PS I hope the food at this hospital is better than the one at the last hospital!
 
So happy to hear things are improving ! :)

I would think it makes sense now (looking back) that with her being so backed up with stool, that there was no where for the food that she tried to eat to go; hence the constant vomiting !
I'm just glad things are finally starting to get sorted and hopefully she will have some answers as to "why" very, very soon!
Hang in there momma Niks, you're doing an awesome job supporting her !
Hope you are getting some rest :hug:
 
Carol - she does realise now. After seeing doc yesterday, when he was so happy with her. He told her this was all really good, they now just need to work out why!! Jaime said to me that before, they would have just sent her home.. Well they did, without even getting this far!

And yes! She's actually enjoying food! No slop and no forgetting her. In fact the opposite - they are constantly coming round asking if she wants anything else!

Crohn's Mom - agree.. Finally starting to piece together. How could anything go through her! So glad I listened to everyone and changed hospitals. Hate to think what state they would have let her get in in ours!! :(

Thank you all for your good wishes xx. :ghug:
 
Yay for good news!!! I am so happy to hear this I have been so worried for her. So nice you are finally in a place that cares. Hopefully they will find some answers for her quickly!
 
So glad to hear the good news!!! It is so great that she is enjoying food! I hope the get to the bottom of everything real soon!!
 
I'm so happy to read your updates! I hope she continues to improve and you get answers soon. You both must be exhausted.
 
Thanks for the continued updated, loving reading these recent ones.
I'm glad Jamie seems to have come to accept that staying a little longer in hospital to allow them to really get on top of the issues is a good thing and she's enjoying the food! Fantastic.
 
I really feel your angst! I want to spit nails on your behalf!!!

First, I think the docs need to acknowledge that they may need to look further than Celiac's as a diagnosis. My son had all of the classic symptoms of Celiac's and endend up having Crohn's Disease. It took over a year for them to run all of tests to "rule things in/out" until they finally had the right dx and we could begin to move forward.

The vomiting blood is very concerning. I would expect the doctors to be more concerned about her symptoms than what you have shared. With Crohn's, the labs are nearly useless in determining/predicting flares or disease status. If your doctor is relying solely on labs, FIND A NEW DOCTOR and quickly.

In my sons case, the MRE is really the only test that ever gives the doctor a good/true picture of what is going on inside his ileum and colon. That said, I am a huge fan of the pill camera. Not because the camera ever gave us the data the doctors were looking for, but because both times he swallowed the pill camera it got stuck. When the camera is stuck, they HAVE TO go in to get it. When the surgeons go in to get the camera, it's like magic...suddenly everything makes sense and the GI doc sheepishly has to come to you and explain how messed-up your child's insides are. It's almost like an apology for not "getting it" sooner. Then the real magic happens...everyone (the GI doc, the surgeons, the pediatrician) understands the true severity and nature of your child's disease and the doors to better access to tests, meds, etc... open wide! I truly believe that we would still be searching for answers (and looking in all of the wrong places), if it were not for that first pill camera getting caught in a section of strictures in the middle of my son's intestinal tract.

I'll be praying for both of you. For peace, for health and for the doctors to have sensitivity and wisdom.

Best wishes for you and your daughter.
Cheryl
 
So glad she is starting to do a bit better - what a difference it makes having the doctors listen to her/you and actually doing something!
 
Hi Niks
Sorry for all the problems, delays and outright negligence that you have had to face with your poor daughter.
It is possible for her to have a motility problem, hard to say until the appropriate investigations are completed.
She is in a very good hospital and they will be the ones who will find the answers.
It may take a little while yet, the GI team know what they are doing.
These investigations take their toll, hence the appearance of slowness.
Take heart from the headway already made.
Feel better soon
Hugs and best wishes
Trysha
 
Hi everyone

Had a very long day! Poor Jaime been in agony today :(

Been in a ball, trying to ease it but nothing helping. Doctor has written her up 2 hourly oramorph on top of tramadol, buscapan and paracetamol.. But little relief poor thing. She hasn't had this level of pain for a long time. Maybe just things moving through her bowels and they're just not used to it anymore!!!

vtfamily - Thank you, I shall be praying for a MRE and Pillcam, they don't think that coeliacs is causing her symptoms, and not even sure if that diagnosis is solid! - She is now in a new hospital and yes her last GI was shocking!

Trysha - Thank you too, so glad she is in a hospital that know what they're doing!

Everyone else, thank you so much for your support xx

:hug:
 
Niks, I know that tramadol shares some opioid receptors and blocks some narcotics. I'm not sure that tramadol may not be blocking her oramorph. You may want to ask the doc about that...
 
hey niks i bet u feel like is one step forward nd 3 steps back . but keep stong they will find out whats causing this painand when they do at least they can start finding out whats wrong . ive been on oramorph amd tram and para it does cause constipation. ut if she was in pain before than thats not the cause as long as shes having something to help things move she.ll be fine i take tramadol everyday for athuritus in my spine and when u need it u need it . hope u get some answers todayxxx
 
Well another week to hopefully get answers. Always amazes me how hospitals virtually "shut down" at the weekend. Hope they get some of the tests organised asap now!
 
Is there a plan to ease off the food (solids) given her increase in pain? I am glad she is in there so they can see this all and so hope they can figure it out soon!
 
Niks,
What a journey! Once the new docs get to the bottom of the problem, I hope they take the time to counsel her old doctor about never allowing this to happen again!

Routing for both of you! I hope your daughter will learn from your example (and this experience) to keep fighting and pushing until someone will listen and will do something meaningful on her behalf!!!!

When she is headed into recovery, I hope someone goes back to the old doctor and "update" him on her status (pointing our his errors). He should not be allowed to do this to anyone else again!

Wishing you all the best,
Cheryl
 
Jeanne, her pain is apparently her bowel going into spasm! It has eased a few times today with continuous pain meds. Pretty much the same as yesterday. Potassium levels still really low so upping supplements.

The scopes she's having on Wednesday have already been done in Swindon, so not sure they'll find anything!! Think they will test until they do though.

Cheryl - her old doctor WILL be fully updated! Along with an update letter to go with our original complaint about him to PALS! I have even received an e-mail from them saying that he would like to meet with Jaime and me when she is out of hospital!! Grrrrr she never wants to see him again!
 
So glad to here you are making progress and that you have finally found some doctors that are taking some action.

I am also grateful you are making a complaint, you will hopefully save another family from dealing with that other Dr. !

I don't blame her for never wanting to see him again.:voodoo:
 
I know Jamie is far from well, but I hope she is at least feeling better because she has been heard, she is being taken seriously and real effort is being made to heal her body.
 
bloody docters they make you so mad dont they .lewis was given the wrong meds once god job i checked as the doc and pharmacy messed up i complained to the pct and my doc requested a meeting its to try and clear the watet so u dont make another complaint . he.ll just try and weedle his way out of it using big words and sayin she wasnt that sick at the time . x hope jamies feeling a bit better and shes not in as much pain big hugs .xx
 
Farmwife said:
I know it sound horrible Niks but Grace might get a g-tube in the stomach (I hope not) but once you see her start to put on weight and start to heal it will be worth it.
Have you asked what they can do to get the stomach "working" properly?
Click to expand...

Farmwife, My son had a GJ-tube put in last year. It has been WONDERFUL. He not only put on weight and got healthier, but it made it soooo much easier to administer contrast for CT/MRE scans and bowel cleanse prep for scopes. It doesn't interfere with any of his normal activities, including swimming or summer camp.
 
Thanks vtfamily,
I have to tell you this so please don't freak out but....
You look JUST like my older sister.
The first time I saw you avatar I almost screamed that my own sister wouldn't tell me what's going on with my nephew and when in sam hill did she move to California.:rof:

Good to know the g-tube is working so well. If you don't mind in the coming weeks I might e-mail you with some questions.:hug:
 
Jaime has scopes up and down tomorrow.

Consultant came to see her today, thinks she may have a narrowing somewhere as the last two days the enemas haven't produced anything!!

He wants to do an MRE as well and has put her as urgent on the list. He won't do another CT scan because of her age. I remember several of you saying this when her old GI said he couldn't do MRE and would only do another CT scan! He said he couldn't do the MRE because of her vomiting. The Consultant today said if she did vomit the contrast they would bypass stomach. (Oh - got an appointment for a CT scan in Swindon for this Friday!! lol, needless to say I have rang and cancelled!!)

The more that we hear in Oxford, the more we realise how bad her treatment and the GI there actually was!
 
This has been a long time coming.

I hope everyone that reads your and J's journey take too heart the fact that you don't give up. Keep pushing.

I'm so glad she's getting the care she needs.

HUGS
 
Thank you FW

When it comes to your kids health there is no other choice!! It is just so great to have the support and the odd little push from you guys :tongue:
 
Niks,
I am so sorry to hear she was feeling poorly again after that big improvement. But thank goodness you are in. Good place with her finally and they are listening and taking of her!!! Good luck with the scopes tomorrow. I will be checking for updates to hear how it went keep us posted when you can.
 
good luck today niks and jami be strong hopefully today i will have some answers and you can start to move forward . big hugs from up north .xx
 
Just wanted to wish Jaime luck for her scopes! Glad they are doing the MRE as well. Glad you got away from the other GI - wonder how many others are being treated as badly! He definitely needed complaining about.
 
Ahh love ur really going through it , let's hope t scopes show something ( that sounds bad doesn't it ) I mean hope they find something that can be easy fixed and ur daughter and u can enjoy her teen yrs x god bless u x
 
Poor Jaime, just rang me, the Consultant has just been to see her and one of the pieces of machine is not working properly!! She is nil by mouth, and now pretty unhappy.

He doesn't know when they can get it going, but he has found 'abnormalties' in her small bowel from the CT scan that the other hospital did. He has put her top of the list. Makes me so MAD!!!!!! Why didn't the other GI see this??? :mad2:

He wants her on a low fibre diet? Surely high fibre would get things moving more??

I really hope that they get the machines working as she is beginning to lose the plot! Poor thing
 
Hope today goes as well as it can.

We're in UK as well and have to travel just short of 2 hours for GI. After poor local treatment, i wouldn't want it any other way now. We understand the pressure it can put on other family members though.

You all have been so strong, hope diagnoses and treatment plan in place soon.

Xxx
 
Hi niks, I hope the scopes ok, and the find out
What has been causing all ur daughters health probs.
Please let us know how it goes.
Where all thinking of you both x x x
 
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.
 

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