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CT scan - some thickening of proximal duodenum?

Tesscorm

Tesscorm

Moderator
Staff member
Glad you sent off the test!!! And, as was said, no need to share with him if it doesn't add value to your argument!

Also agree with Clash's idea! He'll be forced to address each issue/symptom.

Like everyone else, I am just amazed at the runaround you and Jaime have had to endure! I hope that, somehow, the next apptmt brings about some change!!! :ghug:
 
ChampsMom

ChampsMom

Location
North East Coast - USA
I think Clash should go with you - that was awesome!

And I think you should picket the front doors of the building. Might not get you any answers, but could get you a lot of attention. Get the local CCFA involved to stand with you.

You'll need a good chant...

My top 3:

#3. Believe in, Dream of, Hope for a cure!
#2. I will stay strong, I will fight, I will win!

But my favorite....

#1. I don't look sick, but you don't look stupid. Looks can be deceiving.

I think you should make a T-shirt for Jaime and have her wear it to her next appointment. You could wear one that says, "Yeah, what she said..." ;)

HUGS!!!
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
I'd say something like... look doc, I don't care what you call it as long as my daughter stops throwing up 4,5,6 times/day, she's able to eat and maintain weight and her bowels work properly! So far, for nearing a year now, that's not happening! Do your damn job!!!!
 
723crossroads

723crossroads

Location
USA
Just wanted to say hello Niks and thinking of you. How was your day out with the girls? Hope you had fun! We all need a break sometimes from life....:hug:
 
kimmidwife

kimmidwife

ChampsMom said:
I think Clash should go with you - that was awesome!

And I think you should picket the front doors of the building. Might not get you any answers, but could get you a lot of attention. Get the local CCFA involved to stand with you.

You'll need a good chant...

My top 3:

#3. Believe in, Dream of, Hope for a cure!
#2. I will stay strong, I will fight, I will win!

But my favorite....

#1. I don't look sick, but you don't look stupid. Looks can be deceiving.

I need #1 on a T shirt that is awesome! You know how many times a day I hear but you don't look sick or your to young to need a cane to walk!
Click to expand...
 
vtfamily

vtfamily

Niks,
I reached out to someone who (successfully) navigated their Crohn's in the NHS for 20+ years for some advice on how to be taken seriously in your situation. Here's the advice:
In my experience, the only way forwards is to get the family doctor onside with the problem and get his/her help in seeking a second opionion. The medical profession is obsessed by tests over reported symptoms so finding a better listener of a GI would be top of my list.

Sounds pretty simple/basic, but I think it goes go to the heart of the matter for any family in our position. We need physicians who are good listeners and thoughtfully consider our symptoms and concerns.

You are correct that most of us have been through multiple doctors and facilities before finding a situation that works well. So, change as many times as you need to, until you find the right fit for Jamie (and you).

If you don't get anywhere with Dr. B next time you see him, and/or he makes no attempt at a genuine treatment plan, then I suggest you ask for another referral. If he hasn't been able to work out a good treatment plan for Jamie by now, perhaps even he is ready to admit she would be better served by another doctor???

I'll keep praying for you both!!
Cheryl
 
Jane and Nick

Jane and Nick

Dear Nicks, your patience must of been stretched beyond belief. You have been a supportive and pro active mum. I do hope you find the right doctor it's ridiculous that you have not yet got some body to help you.
 
Niks

Niks

Cheryl, thankyou for seeking advice on our behalf!! I know you, and everyone else is right. It is just so frustrating when we are at one of the best hospitals but she is still being fobbed off .

Loving some of your banner and t-shirt suggestions :D.

As always, I really appreciate all the support and advice I get on here. I really would have buckled under the strain without you all. You are all amazingly caring, knowledgeable, supportive and funny!! Especially when things aren't funny, but it does really help to laugh :D.

Thanks you guys :hug:
 
vtfamily

vtfamily

Niks said:
It is just so frustrating when we are at one of the best hospitals but she is still being fobbed off :
Click to expand...
Even at the best hospitals, you still need a doctor who actually listens to you and takes what you say seriously. If the doctor isn't the key, perhaps you need a nurse or assistant who will really listen to you and knows how to "work the system" on your behalf.

You are not being difficult. You've been strong through a very difficult time and been a good example for your daughter!

Any luck with the Mayo Clinic?

:hug:Cheryl
 
DustyKat

DustyKat

Super Moderator
Hey Niks...:hug::hug::hug:

Do you think it may be time to have an advocate?

It doesn't have to be a professional, it could be a very trusted family member or friend but the key is for them to know Jaime but not have the level of emotional attachment that both you and Jaime have and that they are confident in meeting type situations.

It is so difficult not get sidetracked during hospital admissions, you are both tired, scared, frustrated and just plain fed up. Then there are the consultations, again, it is not difficult to get off track and at times even zone out. I have BTDT many a time!

By taking someone else with else with you you not only have an extra set of eyes and ears but they can keep things on track and ensure that vital questions are asked and answered if you give them a list of what you want to know.

They are also very helpful when it comes to the post consult 'post mortem' whether that be in a hospital, clinic or private rooms. It gives you and Jaime that third person to toss information and views off. They may well hear things you don't and they can provide honest and open feedback about the consult as well as if what you may be feeling about a given health professional is valid.

Just something to think about hun. :)

Now if I lived closer I would happily go with you but since I don't how about Skype? :lol:

Thinking of you! :heart:

Dusty. xxx
 
Niks

Niks

Dusty - Would love for you to be able to come!! It is a really good idea. Will have to have a good think about who can come with us. Thank you for suggestions xx

Kimberley, it might be worth mailing them or calling to see if they have any suggestions! Thank you xx

It is just a nightmare.

She collapsed again at work. They called an ambulance once again. She refused to go to hospital, but promised paramedic to ring Oxford. (She hasn't)

Just reading Ambulance sheet. Vitals were out! BP 152/95. Her BP has always been low. What is that all about! Her pulse 115. Told him her pain was 7 (pretty sure she underestimated that). I guess pain could cause this but really unusual for her.

Just about to e-mail hospital about this latest episode but seems a total waste of time. Will send it from Jaime as he doesn't even respond to me!
 
vtfamily

vtfamily

Niks,
DO e-mail, e-mail, e-mail! Send a message each time Jamie has an "event" and (for the time being) with weekly status (weight, avg. vomiting, diarrhea, pain level, etc...). You'll be creating a record and the e-mails will most likely become part of her file. Since they want to hear from Jamie and she doesn't want to send them messages...can you create a second e-mail account under her name for this purpose?
:) cheryl
 
723crossroads

723crossroads

Location
USA
Saying hi and hope you can do what Dusty suggested. They may actually respond to you both better if someone else is there too, so as not to look like an inconsiderate ass!:)
 
kimmidwife

kimmidwife

Niks,
Just wanted to send hugs. I like Dustys idea about an advocate. If you have a friend with some medical knowledge that might be a good person.
 
Tesscorm

Tesscorm

Moderator
Staff member
Niks, I'm going to suggest you get the email address of the head of the IBD department AND the head of Patient Care AND the head of the hospital and copy them in all your emails (even the assistant's email address will do as the assistant won't want to just throw out an email addressed to the 'head').

I'm sure that information must be on the hospital's website. If not, I'm sure if you just call the main number and ask for the names/emails of the heads of the departments, they will give you, at least, the names. If they won't give the emails, google the name, you may find it somewhere else (on some bio or press release). Or, it's likely the email formats will the same as the one for Jaime's GI... ie first-lastname@hospital.com or whatever the format is.

I would copy them on each and every email, including responses to the GI's emails to you/Jaime until you begin to get some sort of response.

At some point, you will get a response to all the emails... they may be forced to take a closer look for fear that all those emails would point to neglect or they may ask to transfer Jaime??? :eek: Not sure if they can do that but, don't go ahead with this if you're not prepared for that response as well!

Other than going to the media, I don't know what else you can do to get their attention! :(
 
Niks

Niks

Tess, that's a great idea!

I need to look into finding e-mails and forwarding everything on. I e-mailed from Jaime's account yesterday about what happened.

The paramedic wanted her to call Oxford, when I asked her why she hadn't, she said she is just worried about getting admitted back to hospital.

I guess in the last 8-9 months she has been admitted to hospital 8 times plus at least 3 times where she has discharged herself or refused to stay. Even with all of this she hasn't really got very far.

I know we won't get a reply over the weekend, but as this mail has come from 'Jaime' he may get his Secretary to reply to her next week. I want to wait until 23rd and then see how that goes. Hopefully he will start to listen!
 
DustyKat

DustyKat

Super Moderator
Niks said:
Just reading Ambulance sheet. Vitals were out! BP 152/95. Her BP has always been low. What is that all about! Her pulse 115. Told him her pain was 7 (pretty sure she underestimated that). I guess pain could cause this but really unusual for her.
Click to expand...
An increase in BP and pulse is not unusual when someone is in pain and/or anxious and no doubt Jaime was both given the circumstances, bless her. :heart:

Actually when my kids are hooked up to a monitor it is another way I can tell what their pain/comfort level is without repeatedly asking and disturbing them. Particularly efficient at stopping eye rolls and groans of despair. :ybiggrin:

Oh Niks, I can well imagine how disillusioned Jaime is with the whole situation. To be repeatedly admitted with the same thing and still no answers it is little wonder she doesn't want to go back to hospital. Not to mention how difficult it makes it for you to now try and convince her when it is needed. :(

Thinking of you and hoping the answers come very soon! :ghug:

Dusty. xxx
 
Crohn's Mom

Crohn's Mom

Moderator
Goodness Niks - I've been so wrapped up in my own drama I've missed yours :(

I'm so sorry things are still going so badly! I agree with everyone else - do whatever it takes to get their attention !
I love the advocate idea :)
I wish sometimes I had some help with this stuff - especially now since I have 2 that are sick at the same time. Maybe I can be cloned ? LOL

I hope she gets some help and answers soon!
Big hugs n love n luck
Xoxoxoxox
 
kimmidwife

kimmidwife

Niks,
Tess's idea about contacting the media sounds like a good one! Maybe you can get them to do an exposé on how patients are not treated properly. How is she doing today?
 
Niks

Niks

Kim, she would be mortified! She Has rang the hospital today because she just can't get on top of pain. She's waiting for a call back, she doesn't want to go bank in, but is in so much pain :( x
 
DustyKat

DustyKat

Super Moderator
Oh Niks...:ghug:...poor Jaime and how heartbreaking for you to see her suffering. :ghug:

I hope they get back to her soon!

Dusty. xxx
 
vtfamily

vtfamily

Niks,

So sorry to read this today. Remind Jamie to tell the nurse or doctor who calls her back that she has ALREADY done a, b, c, d, e, f, g, etc.... before calling and the pain will not stop. Sometimes the docs presume patients are just whining and don't take the time to follow protocols first. Also, if she can video herself when a pain attack happens it would be VERY helpful.

Hugs. Cheryl
 
Trysha

Trysha

Moderator
Staff member
Try googling" University of Oxford Gastroenterology"
This will give the names and phone numbers etc of each GI specialist and their specific interests---as well as their qualifications.
Sorry to hear of all the terrible trials you have been through and hope you will eventually get somewhere with all of this.
Go to the TOP and get the Chairman of the Dept of Gastroenterology involved---this will get results.
Trysha
 
Sascot

Sascot

Sorry to hear things are still not going well, your poor girl (and you) deserve a break - and a definite diagnosis! Wish they could help her.
 
fosterschick

fosterschick

Location
Hull England
Any news on t calpro ? X how's jamie and u doing now ? , thinking of u and big hugs ! I know ur struggle , I have just been put on docusate soduim for diah !! Cos she now thinks I'm constipted !! ( 15 times a day mmmm I don't think so ) she had mentioned pentasa before so gunna push for that nxt time !! Getting diagnosed is a nitemare ! X
 
A

Angela and Rylee

Niks said:
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.
Click to expand...
Hi niks, I just read your dilemma with the MRE, is it the same as an MRI?? Because my daughter is similar has lost 19kgs and vomits everything she puts in her mouth and needed an MRI.. after I had a confrontation with the nurse(trying to tell me she couldnt have the MRI because it would be a waste of time).. Rylees GI rang me to get some anti nausea tablet, she just had to put under her tounge and it dissolved.. she drank all the liquid no problems.. I dont know if your girl is having the same treatment but I thought if u are this worked for my girl.. :) take care
 
Niks

Niks

They wanted her re admitted via A&E. She's not having any of that, she hasn't been to toilet for a few days so she took citrimag and doing enemas.

I am losing patience with hospitals!! Poor J! :(.

No news from FC test yet. Hoping to get results before appoint on Tues.

Angela, that post was before she got admitted to Oxford. They an do it, even if bypassing stomach. Her MRE was clear, but she'd been on steroids for a solid 6 months.

It is all so frustrating. I just wish they'd work out what is wrong, and how to treat !!
 
723crossroads

723crossroads

Location
USA
I don't know what to say except I am sorry you are still going through all this. Poor Jaime! I thought I had a rough life before all this. Nope! Praying for you!:hug:
 
vtfamily

vtfamily

My heart goes out to both of you.

It is good news that they (the doctors) recognize that they need to have J in the hospital...as long as they plan to really step up the testing and intend to keep her until they have a diagnosis AND a real treatment plan. I know it is miserable spending so much time in the hospital in order to reach a diagnosis. I'm sure she understands that this problem is interfering with enjoying and (getting on with) her life anyway. Ultimately, she is not going to find any answers/solutions or develop a treatment plan at work or hanging out with friends. Enduring the inconvenience of being in the hospital IS her best route to "normal."

Hugs to you both.
Cheryl
 
lsgs

lsgs

Niks said:
They wanted her re admitted via A&E. She's not having any of that, she hasn't been to toilet for a few days so she took citrimag and doing enemas.

I am losing patience with hospitals!! Poor J! :(.

No news from FC test yet. Hoping to get results before appoint on Tues.

Angela, that post was before she got admitted to Oxford. They an do it, even if bypassing stomach. Her MRE was clear, but she'd been on steroids for a solid 6 months.

It is all so frustrating. I just wish they'd work out what is wrong, and how to treat !!
Click to expand...
My calprotectins have all taken 2 weeks to come back.

My scopes were done on steroids too, doctor never told me it could cause a false negative until after I paid the £2500 bill. Classy.

Did she improve when she was on the steroids?
 
Catherine

Catherine

Moderator
Niks

I was watching "Home and Away" where Sally had just return home with her daughter who had been diagnosed with mitochondrial disease.

I had never heard of this condition before so I looked it up and it make me think of Jamie. Especially when I read the section: Where does mitochondrial disease hide when it is not diagnosed. And also looked at the graph below this section.

http://www.amdf.org.au/mito-info.htm
 
Niks

Niks

Isgs, she did initially improve on Pred. Once tapered to 20mg her symptoms always came back. However the last time she went up to 30mg (which initially worked a treat in 3-5 days), she didn't improve!

She went to A&E yesterday, her friend took her up. They wanted to put her on morphine to try and help with the pain. She has oral morphine so discharged herself! The morphine though isn't doing it and she has passed out twice in as many days.

We have just been to GP. He has suggested she tries Pethidine. He thinks that if she can she should wait to go to Oxford on Tuesday, so hopefully Pethidine will take the edge off over the weekend.

Blimey Catherine! I have just been reading about mitochondrial disease, there are some things that tie in but a lot that don't (or at least I don't think they do!) Is worth a mention though, it seems that it is very diverse and could affect a lot of areas. Thanks for this xx
 
Catherine

Catherine

Moderator
When I had doubts would mentioning this a very wise woman (Dusty). I told me there is always a range with any disease. She puts it so much better.

Did see on the chart where it said these patients could be found in that big list of clinics, one was GI.

I gather from your response you understand why reading about it made me think of Jamie. I think I read there are over 100 different conditions.
 
Niks

Niks

Catherine, I think we need to start thinking outside the box, so thank you! Will definitely look more in to this.

Jaime today actually looks far more comfortable. I am not happy about the whole pethidine thing, but she is not in agony, so for now it will have to do, at least until Tuesday. She has even got a bit of colour back! Hmm.. She says that the pain is still there but more niggly now than really painful.

I am sure that Oxford are not going to like this, but what is she supposed to do!
 
723crossroads

723crossroads

Location
USA
The only part of that disease that seems to fit is Jaime's motility problems and the throwing up. I didn't see any other symptoms that I have heard Niks talk about except maybe her being so tired too. This doesn't sound like something we would want her to have either. I know I keep saying it, but she needs a pillcam in my opinion. I am worried that if this isn't done soon, she may have some irreversible problems.
 
my little penguin

my little penguin

Moderator
Staff member
Mito typically hits little kids but mitochronidal symptoms can be secondary to other primary conditions since many diseases affect the mitochronidal .

Either way age needs a doc to sit listen and try to get to the bottom of it.

Has she been to any other specialist ?
Endocrinology ? ( they see cover alot of areas) rhuemo ?
Neuro since she vomits think cyclic vomiting syndrome
http://digestive.niddk.nih.gov/ddiseases/pubs/cvs/

And many many others
It may be more than one area or thing going on.
Is ther such a thing as a diagnostic md in the uk?
We have them here for those who are complicated but don't quite fit .

Good luck
 
vtfamily

vtfamily

Niks,

I keep forgetting to mention...when you do finally get someone to start developing a real plan for Jamie, don't forget to ask about a "B" plan too. If "A" doesn't work out as expected, what would follow and how long before you move on?

When we were going through the diagnosis phase with Gus, it was helpful to know what was next. We went through a period of about a year where all of the tests came back negative for what the docs were looking for and not conclusive for Crohn's. You may have to look at all 100 possibilities, before you find the one that explains everything.

:) Cheryl
 
vtfamily

vtfamily

Oh, and thumbs up for the pill camera too!!

Worst that can happen is it may get stuck and they will have to remove it. The upside to that, is that when they do that, they will have finally found "it" and be completely shocked at the same time.

Take care.
Cheryl
 
723crossroads

723crossroads

Location
USA
vtfamily said:
Oh, and thumbs up for the pill camera too!!

Worst that can happen is it may get stuck and they will have to remove it. The upside to that, is that when they do that, they will have finally found "it" and be completely shocked at the same time.

Take care.
Cheryl
Click to expand...
That was my thoughts exactly!:)
 
vtfamily

vtfamily

723crossroads said:
That was my thoughts exactly!:)
Click to expand...
We've done the pill camera twice...both times it was trapped by strictures that never showed-up on an MRI, MRE, x-ray, CT scan, endoscopy, colonoscopy, etc...

The first one had to be removed surgically (laproscopically) and was our doctors fist "shame on me" (him...not me) moment. The second one was found when the doctor decided to do a follow-up endoscope to the pill-cam and found a "blockage."

Okay, so picture it. Two pill-cam studies. Both cameras were stuck...for weeks/months AND didn't make any difference to Gus, because the strictures/blockages he was already experiencing were soooo bad. BUT without those events, Gus would likely still be in some sort of "treatment limbo" because the doctors couldn't "see" what we were really dealing with.

As they say...it's better to be lucky than good sometimes!
 
Niks

Niks

Thanks everyone. MLP, she hasn't been referred to any other specialist.

She has really been struggling with pain. We are now on gastro ward in Oxford. Waiting for doctor! Been in A&E all morning. She just wants them to get on top of pain and then go home, not sure that's going to happen!
 
723crossroads

723crossroads

Location
USA
Did you request a pillcam? Ask to speak to the person in charge and present your case as to all she has been through and why can this not be done as a precaution? Ask for it in writing why they will not do it because if something happens, you will present them with a lawsuit for negligence after all she has been through. Ever think about getting a legal advocate?
 
Niks

Niks

Interest not great here. Latest BP 78/42! Retook manually 80/45. Could be why she's been passing out! What causes low BP?
 
Last edited:
D

DanceMom

I've always had low BP too, even during times of stress and pregnancy. During my college years I was busy (and poor) and not eating properly and began to experience awful headaches and fainting episodes. After much testing it was determined that I had low sodium (not sure how accurate that diagnosis was). I was given a prescription medication and encouraged to eat more healthy foods with extra salt.

I'm not sure how healthy your daughter is eating, but if she is still vomiting there's a pretty good chance her body isn't absorbing what it needs. Ugh, I just feel so bad for her (and you!).
 
X

xmdmom

Malnourished people often have low blood pressure.

I'm assuming they've ruled out adrenal insufficiency which causes nausea, vomiting, fatigue and low blood pressure; also can cause darkening of the skin. Doesn't cause abdominal pain or bleeding. It would respond to prednisone.
 
Niks

Niks

Holly, Yes they've kept her in.

She had everyone running round when her BP was that low, they did ECG, which to start with really confused everyone because the lines were wired up wrong!!! lol.

Her pain is bad lowest 5 today, but upto 9 :-/. It is the only reason why she went in. Today she hasn't vomited at all! I don't remember when that last happened. Yesterday only twice and she has been opening bowels every 2 - 3 days. Her x-rays still show she is backed up. She didn't expect this, so they are doing citramag and enemas, which have got her going.

She thinks she saw undigested sweetcorn, and hasn't eaten that in around 4 weeks! Is that even possible?

Teresa, I will ask about pillcam, and will ask in writing for reason if not an option, I think that is a great idea!

DanceMom, she eats a really good diet, especially now she is gluten free. Pretty much all freshly cooked food, she loves fruit and veg. But maybe all the vomiting isn't helping, or maybe she isn't absorbing nutrients properly? I guess that needs to be looked at.

xmdmom, I have no idea!
 
fosterschick

fosterschick

Location
Hull England
Awww no niks just caught up with this , ur poor baby girl and poor mum ! Hope they can sort her pain at least , hope t calpro test comes in for u maybe shed some light , or promote more testing x big hugs x
 
Niks

Niks

Searching through a whole load of articles, Addison's Disease keeps cropping up.

I know that they did test J for this back in March, but everything seems to fit!
 
X

xmdmom

In Addisons, the skin typically gets darker especially over scars, in the underarms, creases of palms, and areas exposed to sun.
 
Catherine

Catherine

Moderator
Before Sarah was dx with Crohn's we saw a neuro due to fainting.

At that time her blood pressure was 80/45. His believe was the blood pressure was due to low body weight, salt and fluid intake. The fainting was caused by postural hypotension. She also had a EKG performed.
 
Niks

Niks

Maybe we need to get her referred to a neuro!

Her BP over night has been upto 84/51, so a little better! She has been craving salty things. She has never added salt to food, but has been doing this over last few weeks and wanting crisps (chips to most of you guys) much more, the saltier the better.

Maybe she does just have a salt deficiency.

Her weight is better, she is 5kg heavier than she was when she was admitted in March! This must be down to holding much more of her food down and fortisip compacts. So I don't think she is malnourished this time round. Last time definitely!
 
Sascot

Sascot

Sorry to hear she is back in hospital - hope they do something this time and not just let her out with pain relief and nausea tablets. Poor girl!
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
Niks said:
ing.

She thinks she saw undigested sweetcorn, and hasn't eaten that in around 4 weeks! Is that even possible?
Click to expand...
Niks, when my son eats raw apple it doesn't digest at all. Fortunately, he's never had motility issues so it doesn't stay long but I could see that scenario should he get backed up. We've never been able to pin corn down as a problem for him but for many on here, it's a no go. I can't imagine what kind of chemical changes corn could go through in the gut over 4 weeks...fermentation maybe? Could that and/or other food sensitivities be responsible for some of J's problem?
 
D

dannysmom

Location
NY
Hi Nik ... I do not even know what to say but wanted you to know I am thinking of you guys. If you do talk to doctors about Addison's, ask if she had the ACTH stimulation test? I had wanted this test for Danny, but the endo did not think it was needed.
 
Niks

Niks

Okay. She's back home! 2 X Citragmag and enemas seemed to do the trick with clearing her out (although without vomiting and actually having a BM every 2-3 days she didn't think that she was that bad!) Pain a little better and BP has gone up to 95/50 so a little better.

She has been told to stop all laxatives and is now going to take Pruclaopride 2mg once a day. Anyone with any knowledge of this? Just done a quick google, looks like it may do the trick!

She still has to go to see consultant on Tuesday, so have a lot of questions regarding all of this for him, including pillcam, pain, vomiting, bleeding and blood pressure!

They don't think Addison's as her Sodium levels are fine (141).

The only bloods that were only very slightly low was platelets (145 Normal range 150-400) but all other bloods good so not worried about this.

Diagnosis at discharge - Dysmotility (again!) and Constipation predominant IBS.

I guess if this new medication works then this is a pretty good outcome, but we'll have to wait and see! They don't have it in stock at the hospital, so pretty sure that the pharmacist won't have it either, she will have to get it ordered through GP tomorrow.
 
X

xmdmom

Pruclaopride is a potent stimulator of gut motility that is used with chronic constipation. From what I read it seems to work in women in whom laxatives didn't work.
Hope it works for her!
 
Niks

Niks

Sounds promising huh! :), hopefully it will at least sort that out, and then we can see where she stands. It may sort the whole problem. Just odd that this is not how it all started!
 
723crossroads

723crossroads

Location
USA
I sure hope this does the trick Niks, but I would still push for pillcam just to be safe. Ya know? She has gone through far too much to just be motility to me. At least there is some promising things happening. Why on earth didn't they try this med a long time ago? Dr.'s tick me off!!!:voodoo:
 
Niks

Niks

pTeresa - apparently People have to meet a certain criteria, with 6 months or more severe constipation or dysmotility! Plus some other criteria. Patients have to meet the 'NICE' criteria. I don't know whether this is just UK? Yes will ask about pillcam too!

Jaime passed out again when we got home. Was very brief, but she hit her head on the sink! Poor bugger. She said her pain was only about 4 or 5 so thinks it may be blood pressure. Do you know if slightly low platelets can cause low blood pressure? Have tried looking but a bit confusing!
 
littlemissh

littlemissh

Low platelets do not cause low blood pressure. At that level I wouldn't worry at all about her platelets. Its reassuring to a degree, because platelets tend to rise with inflammation so with hers being on the low side, that's good.
 
723crossroads

723crossroads

Location
USA
Niks said:
pTeresa - apparently People have to meet a certain criteria, with 6 months or more severe constipation or dysmotility! Plus some other criteria. Patients have to meet the 'NICE' criteria. I don't know whether this is just UK? Yes will ask about pillcam too!

Jaime passed out again when we got home. Was very brief, but she hit her head on the sink! Poor bugger. She said her pain was only about 4 or 5 so thinks it may be blood pressure. Do you know if slightly low platelets can cause low blood pressure? Have tried looking but a bit confusing!
Click to expand...
I will let you know.
 
723crossroads

723crossroads

Location
USA
I looked it up and low platelets don't seem to cause low blood pressure. Low weight does though. Low platelets cause passing out and can be caused by certain medications. If they drop ,then they suggest getting tested (bone marrow) for non hodgkins lymphoma. The passing out is worrisome. Keep getting her blood tested every 4-6 weeks and keep watch on her platelets as this can be a serious thing. Just my advice. When I had my son my placenta was leaking protein into the blood and all my platelets were gone from them trying to fight the protein in my blood. So if something is wrong, platelets seem to try and fight things off. I hope the Dr will keep monotering Jaime for all these symptoms. My sister is very thin for her height and weighs less than normal and she has low blood pressure. Always did. She used to faint a lot!
 
DustyKat

DustyKat

Super Moderator
Hey Niks,

Our guidelines for the approval of medication I think run pretty close to yours. This is lifted from an Australian Government publication regarding Prucalopride:

*Before prucalopride is considered patients must have tried at least two different types of laxatives from different classes (at the highest tolerated recommended doses) for at least 6 months, but have not had adequate relief from constipation.

*If treatment with prucalopride is not effective within 4 weeks, the benefit of continuing treatment should be reconsidered.

http://www.health.gov.au/internet/main/publishing.nsf/Content/pbac-psd-prucalopride-nov11
Click to expand...
The document is the results of the PABC consideration of the drug to be placed on the PBS. It does make for some interesting reading as it includes trial results.

Thinking of you both Niks! :heart:

Dusty. xxx
 
Niks

Niks

Thanks Dusty! I think found this article too. It seems it could be pretty positive! Fingers and everything else crossed!

Thanks too Theresa. Will definitely keep an eye on it!

xx
 
littlemissh

littlemissh

They are only just low and if her hb and white counts are normal then it is extremely unlikely to be anything worrying. Platelets at that level wouldn't cause passing out.
It is worth rechecking her fbc in a few weeks to check but I wouldn't worry.

What is her normal bp when not in pain ? It is not unusual for young women to have bp of 90-100/ 50-60. I would imagine it was lower when in hospital because she was dehydrated. Low bmi as crossroads said can cause bp to be lower as it doesn't need to be as high.
A bp if that level could certainly cause dizziness and if mildly dehydrated, fainting.

Make sure she doesn't jump out of bed, stand up quickly after a hot bath and is careful after a hit shower ...lots of fluids.
 
Niks

Niks

littlemissh, you're right. Her BP is normally pretty low. But it did drop right down and couldn't even be measured on the machine they had to do it manually. I am sure this is why she is passing out. I don't think she was dehydrated as she was on IV fluids and was drinking plenty.

Her BMI is much better now too, I am a little perplexed as to why her BP is dropping so low.

Her Platelets are only a little out so not really worried, just wondered if there was a connection, but as there isn't should all be fine. Thank you for your help! xx
 
Catherine

Catherine

Moderator
Niks

We only had one appointment with the neuro who dx Sarah with postural hypotension and send us on our way after a couple of heart tests to rule out some more serious things.

But he also told us if she faint more than 3 times in the next 12 months to come back and see him.

He also explained to Sarah the warning signs of a faint coming on which allowed to avoid some by getting her head lower.

Following is how he confirmed postural hypotension in his office.

1. Blood pressure taken while sitting on the couch (85/45).

2. Blood pressure taken after laying on the couch for 5 minutes (80/45)

3. Blood pressure taken after standing very quickly (60/40) (He led her arm to stop her falling while doing this one).

In Sarah's case she is prone to fainting/dizzy spells when her weight is under 56kg.

After this appointment she began to tell me all the times she become dizzy, it was like it was so normal that she didn't mention it.

Things like at swimming they would swim 25 metre, get out of the water and walk back. This would cause to become dizzy.

Good luck, getting that neuro appointment.
 
CarolinAlaska

CarolinAlaska

Holding It Together
Niks, I'm sorry I've not been around for a week or two. I'm sorry Jaime is still suffering and now having low BPs. I hope the GI doesn't blow her off on Tuesday, but has some solutions. I'm not sure of the med your do put her on. Is it similar to Amitiza? That is used in the US for chronic constipation and works really well for some people. Could the long-term pred be a cause of her low BP? I don't think you've ever said anything about her skin color... does she look dark/tanned more than you'd think she should?
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
I hope the new med does the trick Niks!! She's been going through this so long, you may as well give it every benefit of a doubt!
 
Niks

Niks

Carol - she generally looks really pale and pasty. Sometimes grey, with dark circles under eyes. So no, no darkening of skin xx

GP had never heard of meds! He had to look it up, but now ordered. Will be there tomorrow.
 
Niks

Niks

Jaime's appointment on Tuesday was pretty good, saw two GI's! they have not ruled out doing pillcam! They want to wait to see how this new medication pans out. She has been booked for bone density scan and they have checked a lot of her bloods, apparently her last Thyroid blood test was pretty low (don't know numbers) so checking that, B12, Vitamin D and a whole load of others. Not really sure what low thyroid really means, but maybe it was just a one off.

She took new medication for the first time this morning and after pretty bad pain managed to go to the toilet after just 2 hours of taking it! Better than Citramag! She has been again later, with a little blood, but she said wasn't too bad. So that in itself is really encouraging!

Jaime told them that her GP panics when she goes in as he doesn't really know what to do with her. One of them said they feel like that too as they are the end of the line! He said it light heartedly, though, he said that he doesn't think this is the end of things and things will probably change, but now feels that she is getting the best treatment for what is going on at the moment.

I actually feel happier that they are taking her seriously and hoping that this new medication really works for her!
 
QueenGothel

QueenGothel

Location
Michigan, USA
Low thyroid can actually cause an ileus or slowed bowels. I have Hashimotos Thyroidis and so I had mt DD tested for it when she had an Ileus. I know they don't think this anymore but wouldn't it be wonderful if it were just hormone replacment she needed.
 
Niks

Niks

QueenGothel said:
Low thyroid can actually cause an ileus or slowed bowels. I have Hashimotos Thyroidis and so I had mt DD tested for it when she had an Ileus. I know they don't think this anymore but wouldn't it be wonderful if it were just hormone replacment she needed.
Click to expand...
It would be incredible!!! Could it cause fainting too? x
 
my little penguin

my little penguin

Moderator
Staff member
Thyroid cause cause alot
Slurred speech
Coma
Not something to mess with
Make sure they tested
Tsh
T3
T4

Maybe an endocrinologist would be a good idea since they deal with alot of system
Which can meds with the Gi tract
 
Niks

Niks

They were all on the list MLP, she had to go to our local hospital to get them done, because we were too late in Oxford!!

xx
 
D

dannysmom

Location
NY
Is this the first time they tested her thyroid? Do you know the numbers? (just curious) I had RAI on my thyroid due to Graves, and the doctor waited too long to begin supplementation. I went SO low my TSH was 39 ... just awful. I could barely eat because my digestion backed up so much. It would be an easy fix :) Hope this new medicine helps!!
 
vtfamily

vtfamily

Don't know about the UK, but I have noticed that the doctors here approach IBS differently from IBD. It's almost like IBS is "just aches and pains" (like a cold) compared to IBD being a "serious disease" (like meningitis). Jamie has been feeling so awful for so long, I hate to see the doctors minimizing her condition.

Assuming she is passing food that is weeks old...that is much more than a motility issue. Ask yourself...how poorly does one's digestive system need to be working for weeks old food to be recognizable as it passes??? I'd bet that whatever she is passing in her bm every 2 to 3 days is actually "going around" some kind of blockage.

Oh, how I pray for answers for both of you.
Cheryl
 
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