• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

CT scan - some thickening of proximal duodenum?

CarolinAlaska

CarolinAlaska

Holding It Together
Niks, I was at a CCFA (Crohn's and Colitis Foundation of America) conference today on IBD. I took one big thing home from it, and I thought of your daughter (and my nephew)... One of the GI docs said that if there is any possibility of stricture in the bowels, it is malpractice for a doctor to prescribe pain meds as they will make the problem worse, increase the nause, slow the transit, and ultimately could lead to bowel rupture! Your daughter has got to talk to a doctor and get weaned off that stuff. No one ever died of too much pain, but MANY young people die of opioid complications every year (even when given in right doses). Opioid related deaths are now #1 cause of death in people between the ages of 18-40! PLEASE talk to your doctor and your daughter about this.
 
Sascot

Sascot

Hope the bowel prep works again. Is she trying anything else along with it? I don't mean over the counter meds, but some of the old fashioned things like prune juice (lovely) - I know prunes are not great, but if she is allowed custard - prunes and custard are nice together. I agree with Crossroads - is she trying suppositories as well - you can get glycerine suppositories over the counter and I don't think there is anything in them that would be harmful or interfere with what Jaime is already taking.
 
Niks

Niks

She has been told NOT to take prune juice as it is really high in fibre and she is supposed to be low fibre?? I absolutely agree with you, she has tried in the passed though and didn't made any difference. She actually doesn't mind drinking it!!

Suppositories don't work,(although she hasn't tried them for a few months) as she doesn't seem to block up in the lower half of her bowels, which I think is why the enemas don't work now. Whenever she has been examined she is completely clear in lower half. Surely this does suggest some sort of blockage??

Maybe we should ask her GP if she could try with suppositories again though.

Carol - I agree about the opiods. It is so hard though, because she is literally in a ball in agony :confused2: They are the only thing that seems to help at all. I really think she needs some proper pain management. Need to go with her to GP and see if he can refer her to a pain management clinic urgently.
 
Niks

Niks

J says that when she has gone, just a tiny rabbit dropping it is white! She has had some odd colours but white!!

Googled And suggests liver but all her bloods for liver have come back good. Weird? Probably digestive issues, anyone else had this??
 
D

dannysmom

Location
NY
Not sure what the white means .. but if it happens again, perhaps you can save it in the refridgerator so it can be tested?

Have you considered going to St. Marks Hospital for a 3rd opinion? I read they are UK's leading bowel disorder hospital.
 
723crossroads

723crossroads

Location
USA
Niks said:
She has been told NOT to take prune juice as it is really high in fibre and she is supposed to be low fibre?? I absolutely agree with you, she has tried in the passed though and didn't made any difference. She actually doesn't mind drinking it!!

Suppositories don't work,(although she hasn't tried them for a few months) as she doesn't seem to block up in the lower half of her bowels, which I think is why the enemas don't work now. Whenever she has been examined she is completely clear in lower half. Surely this does suggest some sort of blockage??

Maybe we should ask her GP if she could try with suppositories again though.

Carol - I agree about the opiods. It is so hard though, because she is literally in a ball in agony :confused2: They are the only thing that seems to help at all. I really think she needs some proper pain management. Need to go with her to GP and see if he can refer her to a pain management clinic urgently.
Click to expand...
I still think she needs a pillcam soon!
 
Maree.

Maree.

Don't want to sound like a pessimist here Niks, but will also add just because her liver tests we're normal in the past doesn't mean that they'd be normal if those tests we're done now, so if I was in your position I think I'd be wanting them re-run to reassure me that's nothings changed on that front.
 
Niks

Niks

Maree. said:
I don't know what it means either and did a web search too. The mayoclinic had a Q&A page on white stool: http://www.mayoclinic.com/health/white-stool/AN01724

Thought I'd point out the first line of what they had to say:
"White stool is not normal and should be evaluated promptly by a doctor."
Click to expand...
I found that too Maree, but I am guessing as she has ongoing digestion and gastro problems that they will just put it down to this! Her GP has asked her to go in this week, I told her she needs to mention it.

Jeanne, apparently it has been white for a while! She said she told me, but I am pretty sure I would have remembered this! I guess because I always ask her if she's managed to go at all that is what she thinks is most important. I am off to work in a bit, will get a sample pot for her. Hopefully she will go again in the next few days, only if it is only a tiny amount.

Teresa - I only wish they would agree to do this! Although I doubt it would go through her at the minute, they need to do a proper clear out first! xx
 
Niks

Niks

Maree. said:
Don't want to sound like a pessimist here Niks, but will also add just because her liver tests we're normal in the past doesn't mean that they'd be normal if those tests we're done now, so if I was in your position I think I'd be wanting them re-run to reassure me that's nothings changed on that front.
Click to expand...
Hopefully her GP will think they need re-doing too. It's bank holiday here tomorrow, so she's going on Tuesday to see him. Hopefully she can take sample with her and he can get bloods re-done.
 
fosterschick

fosterschick

Location
Hull England
Is she on any maintance laxitive ? Totally no where as bad as ur girl but wen I went in obstructed and they thought narrowings were t cause they gave me 8 to 10 movicols perday ( taken over the day ) for 1 mnth then down to 6 a day for further two months , now I just have them when my poop is thin and I feel like I need them , just an idea to throw in , senna and colon preps are agressive and movicol is more gentle by absorbing water from t body for sloppy poop !! So I'm told ?? Xx hugs and stuff x
 
Niks

Niks

She doesn't tolerate movicol or any thing similar. We have tried so many times. She instantly vomits! After several attempts and medical staff witnessing this they have put on her notes that she is allergic to it!
 
Kimberly27

Kimberly27

Location
Mendocino County, Northern California
Have you considered calling Oxford and update them about the color of Jaime's stool, just to make sure it's not a crisis situation? I wonder if Jaime's "back up" it blocking the bile duct tube. It may not be the liver functioning (normal tests), but rather a physical obstruction.

Hugs. I know this is tough.

Kimberly
 
Niks

Niks

I will call Oxford, they must have someone on call tomorrow. They do seem to want to pass back to GP and Swindon, but you're right, as it's potentially liver related, they need to know!!
 
CarolinAlaska

CarolinAlaska

Holding It Together
Niks said:
I will call Oxford, they must have someone on call tomorrow. They do seem to want to pass back to GP and Swindon, but you're right, as it's potentially liver related, they need to know!!
Click to expand...
Grrr! :ymad: We thought we finally had you in good hands, now they want to punt back to Swindon? :eek2::ybatty::eek: Go to St Mark's. You need someone to start fresh with her and follow-through until this gets resolved!:confused2:
 
Kimberly27

Kimberly27

Location
Mendocino County, Northern California
Can you just show up at the Saint Mark's A and E (ER room) and get help that way? If Jaime states her level of pain (imagining she's not on meds.) then don't they have to admit her?

You're country's health care system is confusing to me. But on the other hand, I spent $13,000 on medical last year WITH insurance! So it's bad everywhere!

Don't you have legal rights to protect Jaime and get her care?

Kimberly
 
kimmidwife

kimmidwife

Niks,
I have to agree with the others. She needs to be seen ASAP about this white stool. Like Kimberly27 said can't you just say you were passing through and St. Marks was the closest hospital to where you were? I know negotiating these health care systems is not fun but she needs to be seen by the best GI available at this point. She is not a normal case and needs to be seen by the top guy.
 
kimmidwife

kimmidwife

Niks,
I tried to google top GI docs for GI motlility disorders in the UK and this is what I found:
This is the website:
http://www.cuh.org.uk/addenbrookes/services/clinical/gastroenterology/services/motility.html
This is about them:

Corporate informationAddenbrooke's HospitalResearch and DevelopmentThe Rosie Hospital
For patientsFinding usServicesInfection controlNewsFor health professionalsHave your sayContact usWorking for us
Gastroenterology
About us
Our services
Barrett's oesophagus and oesophago-gastric cancer
Coeliac disease
Dyspepsia and other upper gastrointestinal disorders
Endoscopy
General gastroenterology
Inflammatory bowel disease (IBD)
Intestinal transplantation
Iron deficiency anaemia
Irritable bowel syndrome (IBS)
Motility disorders
Nutrition and intestinal failure
Patient information
GP information
Meet the team
Research
Education
Useful links

For NHS staff on NHS computers

Gastroenterology and endoscopy information on Connect - the hospital intranet



> Website accessibility help
Motility disorders
Gastroenterology services

The gastrointestinal motility service undertakes studies to determine if the bowel movements are normal. We can determine if the swallowing mechanism of the oesophagus is normal, and if there is a problem with the valves (sphincters) which may allow acid reflux. With the help of our colleagues in nuclear medicine we can also measure the rate at which food travels through the entire gastrointestinal tract including the stomach. The non-invasive urea breath test allows diagnosis of helicobacter pylori infection of the stomach, this bacteria can cause ulcers. Sometimes too many bacteria grow in the small intestine and can interfere with digestion. We call this bacterial overgrowth. This can be diagnosed with another type of breath test, called a hydrogen breath test.

We also offer a service called biofeedback which is useful for severe constipation, evacuatory disorders and bowel incontinence. This is a rather new specialised service which is based on non-invasive methods to treat these conditions. We have recently added sacral nerve stimulation to our service which has been producing very good results for treating bowel incontinence. Many patients with the irritable bowel syndrome have associated motility disorders such as evacuatory disorders and gastro-oesophageal reflux. The Addenbrooke’s IBS service works closely with the motility department to provide comprehensive investigation and treatment.

The GI Motility Service at Addenbrooke’s Hospital was established in 2002. It is managed and run by Dr. Stephen J Middleton MA, MD, FRCP (Motility Unit Director, consultant gastroenterologist), Dr. Xiaomei Ouyang MB BS, PhD (clinical scientist and lead GI physiologist), Sister. Lynette Byatt (specialist nurse), Sister Catherine Price (specialist nurse), Ms. Dianne Cinque (assistant physician), Mrs. Bridget Chukualim (data manager) and Ms. Paula Block (clinical coordinator). The following services are provided by the GI Motility Unit:
Oesophageal motility testing
(Dr. Xiaomei Ouyang, from Monday to Friday throughout the year)
Ambulatory pH studies
(Dr. Xiaomei Ouyang, from Monday to Friday throughout the year)
Biofeedback/bowel retraining for fecal incontinence or constipation
(Sister. Lynette Byatt, once a week throughout the year)
Hydrogen breath tests for small bowel bacterial overgrowth and carbohydrate malabsorption
(Ms. Dianne Cinque, every Thursday throughout the year)
Breath tests for h. pylori infection
(Sister. Catherine Price, first and third Thursday of the month)
Patients with GI motility disorders may be seen initially in Clinic 12, Gastroenterology outpatient, or they may be referred directly to the GI Motility Unit if referring physicians anticipate that diagnostic motility testing or biofeedback training will be needed. Diagnostic motility tests may be requested directly by outside physicians, but a medical consultation with one of the clinicians affiliated with the GI Motility Service is recommended.





Print this page
NHS Direct | NHS Choices | Give blood | Be an organ donor
Staff zone | School of Clinical Medicine | GP Website
© Cambridge University Hospitals 2013. All rights reserved. Privacy statement
 
Niks

Niks

Carol - I think they want her to be able to manage on the whole locally! They want her to be able to go to Swindon, but under their guidance I think!

Kim and Kimberly, we did literally just turn up at Oxford A&E. I am really still holding out for them as they have a really good gastro team. We just seem to have hit a brick wall right now. She really isn't a typical case!!

Also Kim thank you so much for finding the hospital in Cambridge! That is a fair distance for us, but not impossible. I need to talk to Oxford and see what they are really thinking and then her GP.
 
Niks

Niks

Finally got hold of on call Gastro today. Not concerned about white stool, as she is not yellow! He told me that they have a new medication that they want to start Jaime on at her next clinic appointment but have to apply for a license to give her this?? This sounds very odd to me! Surely things should already be licensed?? Very confused. Was at work when I talked to him and he didn't personally know Jaime. So he had to look up her notes.

Hmmm, maybe will have to wait until 21st to understand! xx
 
Niks

Niks

Honestly I don't remember!! It began with P, but was so surprised I really didn't take it in!! :ybatty:

Why would they have to apply for a license to give it to her though??
 
723crossroads

723crossroads

Location
USA
Niks said:
Finally got hold of on call Gastro today. Not concerned about white stool, as she is not yellow! He told me that they have a new medication that they want to start Jaime on at her next clinic appointment but have to apply for a license to give her this?? This sounds very odd to me! Surely things should already be licensed?? Very confused. Was at work when I talked to him and he didn't personally know Jaime. So he had to look up her notes.

Hmmm, maybe will have to wait until 21st to understand! xx
Click to expand...
It must be something powerful and that would be a cause for licensing??? Maybe?
 
my little penguin

my little penguin

Moderator
Staff member
Phenothiazines are dopamine receptor antagonists that act at the level of the chemoreceptor trigger zone in the medulla oblongata and include prochlorperazine and promethazine. These agents may be administered in a variety of ways including tablet, liquid suspension, suppository, or injection. Unfortunately, side effects in this class are relatively common and include sedation and as well as extrapyramidal effects (3). Parenteral prochlorperazine has undergone increased scrutiny recently by the FDA, cautioning its use due to several reports of associated tissue necrosis.
Click to expand...
From :
http://www.practicalgastro.com/pdf/June07/June07BoninoArticle.pdf

Hope that helps
 
Maree.

Maree.

Interesting that this is a gastroparesis medication. One question I'd ask the GI is whether success on this medication would result in a confirmed diagnosis?

I have neuropathic issues and in that space response to particular medications is one of the ways that Neurologist finalise diagnosis, because some of the drugs have very narrow set of things they are effectively treat.

If it is the case that success or failure of this med would show whether or not this is gastroparesis that might be another reason to consider giving this a try, even if the side effect profile means it's not something your comfortable with as a long term solution.
 
Niks

Niks

Maree I think you're right. She can't continue like she is, it has got to be worth a go!! Trying to find out how long it should take to work! X
 
lsgs

lsgs

Niks I've not posted in here because I've had little to offer but if it's helpful I've been on that medication since about the same age as your daughter and have had no side effects. When I saw the list of side effects it freaked me out too but I honestly have not had one.

It's been quite helpful in controlling my nausea.
 
Niks

Niks

lsgs said:
Niks I've not posted in here because I've had little to offer but if it's helpful I've been on that medication since about the same age as your daughter and have had no side effects. When I saw the list of side effects it freaked me out too but I honestly have not had one.

It's been quite helpful in controlling my nausea.
Click to expand...
Thank you! That is really good to hear x
 
Niks

Niks

Thanks Carol, she's pretty much the same. No BM's and a fair amount of pain.

She's going to work though!! I think she's better doing things than staying in. She's falling asleep a lot when not working, but at least that means she's coping with the pain!!
 
Sascot

Sascot

Glad to hear she is managing to go to work, even if it is a struggle. Hope the new meds help - I agree, anything is worth a try after all this!
 
Niks

Niks

Kimberly, that's her next appointment!! Have tried to get it brought forward but they won't!

:ymad:
 
Niks

Niks

Have just read more about Faecal calprotectin.. Do you think I should push for Jaime to have this test? She had a stool test once when her stool was bright green which came back normal. (It didn't look normal!), but I don't think this is the same thing?

Just worried about putting her on medication for bowel dysmotility if she really does have an obstruction and inflammation that hasn't been picked up :confused2:
 
Mehita

Mehita

Sounds like a good idea to me, especially if you can't get in to see the GI sooner. At least you'll have something. I thought I read in a post recently that it can take up to 6 weeks to get a result in the UK?
 
Maree.

Maree.

Lots of people seem to get elevated Fecal Calprotectin results who get normal results on other tests, so it is definitly an interesting one to pursue.

Has Jaime had any scans that look at her small bowel? Has she had stomach emptying tests and if so did they give any indication as to where in the digestive system the transit times slow down?

Although Liam's case is much milder and we are looking at much simpler treatments at present I have a similar concern with him. If stuff is getting stuck in the small bowel for way too long could this be due to obstruction or inflammation in there?
 
Niks

Niks

MLP - I really didn't understand that this test showed inflammation! I really wish I'd realised earlier and asked about it!

Mehita, I don't know how long it takes, for tests to come back! 6 weeks sounds like a long time!

Maree - she has had a CT scan but that is all. They tried a barium meal once, but it didn't go passed her stomach and after a long time of it just sitting there, she vomited. The rest solidified in her stomach. No other stomach emptying tests done! They really are diagnosing on her symptoms and MRE.

Okay so this sounds like a good way to go, can her GP order it? Or does it need to come from GI?
 
Maree.

Maree.

Thanks momoftwinboys, that sounds really interesting. Liam's GI has said he will give us a diet for motility issues, he said timing of eating different foods, not just what you eat matters. Will be interesting to compare what he recommends to this.
 
Niks

Niks

URRRRRGGGGHHHH, J is convinced she's vomited faeces a couple of times today :( this is NOT good. Just wonder how long she has to go on like this before anyone really listens! :ymad:
 
X

xmdmom

Vomiting feces can be a sign of a large bowel obstruction (usually mechanical but sometimes "functional"/paralytic ileus) or fistula with the stomach. Please call the doctor now.
 
723crossroads

723crossroads

Location
USA
Niks,
WHEN MY BROTHERS BOWEL BLEW OPEN HE HAD IT COMING UP TOO. THEY HAD A TUBE DOWN HIS THROAT INTO HIS STOMACH FOR 9 DAYS TILL IT ALL FINALLY CAME OUT. PLZ CALL A dR. AND GET HER TO ER!
 
Maree.

Maree.

:ghug:
My thoughts and prayers are with you & Jaime.
Hoping that you've made it safely to hospital by now & that she's getting the help that she needs.
 
Niks

Niks

She didn't tell me yesterday until really late, as I was doing an 8 hour round trip to pick up my son from Uni for the Sumner.

The same happened this morning, with blood!!! :frown:

Off to hospital now
 
Niks

Niks

No Carol. Called Oxford, they told her to call out of hours in Swindon, because it's quicker to get there. We're just waiting! He said to get doctor at Swindon to call them. Very nervous about this!!!
 
Sascot

Sascot

So sorry to hear this! Hope they manage to find out why it's happening. Why is it these things always need us going to hospital at the weekend when half the staff aren't there!
 
DustyKat

DustyKat

Super Moderator
Good lord Niks! What a nightmare you and your girl living! :ghug:

I hope Jaime is doing okay, bless her heart.

In regard to her white stool, make sure they also bring her pancreas into the equation, not just the liver.

Good luck! You are both in my thoughts.

Dusty. xxx
 
Niks

Niks

OMG I remember why the hell we didn't like going to Swindon! We were at hospital by 8.00am. She was referred pretty quickly to Surgeons. We then waited a while. A very lovely nurse after very patiently spending a good half an hour trying finally got bloods taken. About an hour later was seen by surgeons who wanted to do x-ray (ordered straight away 10.00ish), and admit her. 'probably nothing much will happen over the weekend, but she needs to be nil by mouth and have IV fluids'

Jaime burst into tears (she hates staying in especially Swindon) I asked them to call Oxford as Oxford had asked. They didn't!

We waited until about 2pm. No x-ray. I chased up until about 2.45. Still nothing. Jaime went to the desk and said she wanted to discharge herself. Suddenly a Senior Surgeon appeared, said he would chase x-ray. Advised against leaving. I asked what her bloods were and if I could have a copy. After an awkward silence, THEY HAVE LOST THEM!!! GRRRR..

Jaime, once again burst into tears and said she wanted to leave! Signed a form and we are now at home, so have no idea what is going on. She wants to take colon prep, and extra senna, hoping this will get things moving and go and see GP on Monday!! She has only vomited 3 times so far today, but hasn't eaten since yesterday evening at 6pm. I am completely at my wits end. :ack:

I know you are all going to say, take her to Oxford, call them, but we called this morning and they wanted her to go to Swindon. She refuses to go up there, so seems pointless calling them to update, when she wouldn't go even if they wanted her to..
 
Devynnsmom

Devynnsmom

Niks, I am SO Sorry. I can't believe the way they are treating Jaime! It's too bad you can't sue them. What would happen if you just went to OXford and told them about what happened at Swindon? Tell them you are NOT going back and maybe threaten to get the media involved if nothing is done? You must be so frustrated and poor Jaime must have lost all her faith in the doctors. ((((((hugs))))))
 
Ands

Ands

Location
Somerset, UK
Niks, my thoughts are with you and Jamie. This is truly the NHS at its worst; it just shouldn't be like this. I can understand Jamie's wanting to come home and what a difficult position this puts you in. As always you are there and supporting her and must be made of some pretty strong stuff yourself. In your shoes I think I would just watch and monitor and if things get worse head straight to Oxford.

Look after yourself too, it must be draining on everyone.

Xxx
 
Niks

Niks

I agree MLP, but you don't know how stubborn my daughter is! She has had enough of hospitals to last her a life time.

Devynnsmom and Ands thank you both, am going to leave it for now, but we will not be going to Swindon again. I can't WAIT until her appointment on 21st and really explain what the hell has been going on. Her GP very well might call Oxford for us on Monday. He actually seems to be the only medical person who seems to care, or want to do anything right now!!!

I think the problem is she doesn't 'feel' too bad! She is so used to pain and vomiting I don't think she remembers what it feels like to feel well though :eek2:
 
Devynnsmom

Devynnsmom

Thats so sad :(
I remember being told when Devynn was first diagnosed, that these kids don't remember what its like to feel good sometimes. Devynn had MAJOR behaviour problems when she was younger and when she was diagnosed the dr told me we may see a major improvement once the meds for her tummy work. They did, in under a week she was a different child. She had no real memory of what it was like to feel well. Even now, she's been feeling so crappy (no pun intended) lately that she forgets what it feels like NOT to feel rotten. I hate it.
I hope you get some answers soon. My heart hurts for both of you.
 
xX_LittleMissValentine_Xx

xX_LittleMissValentine_Xx

Moderator
Location
Reading,
Poor girl!
I can understand not wanting to be in hospital... But can she not understand how ill she is? I would have thought at 19 she would be old enough to accept she has to do something she doesn't want to do. When I've been really ill I have found being in hospital surprisingly comforting.
I really hope you GP can do something for you on Monday. This must be so hard for you to watch her go through this. I know my mum freaks whenever I'm even slightly Ill, maybe more than I do!
 
Farmwife

Farmwife

Niks said:
I agree MLP, but you don't know how stubborn my daughter is! She has had enough of hospitals to last her a life time.
QUOTE]



:ymad:There's no reasoning with stubbornness. Ask my hubby.:yfaint:

Like it or not her fight is what's keeping her alive.
Like you said her pain has become her daily life.
You could always do what my mom did....threaten to have her committed and then you'll get your way.:smile:
Click to expand...
 
Last edited:
lsgs

lsgs

This story is beyond belief, honestly. Although it doesn't really surprise me, sadly.

I have had tummy problems since I was a kid and I remember last year when the prednisolone kicked in thinking, my god, this is how good life is supposed to be?! It is incredible the level of pain you adapt to having and eventually come to think of as 'normal'. I feel so sad for Jaime.

As a sidenote, you mentioned faecal calprotectin... Mine has been consistently raised for a long time now and it hasn't really got me anywhere. Even with a raised result they won't treat you for anything even though all the research (some by my GI himself!) says if it's high you probably have IBD. They really want to see it on a scope or a scan. Although one GI I saw was willing to say I had IBD, he just couldn't pinpoint where, but he did a LOT of research on the area so was a bit more clued up on it.
 
Niks

Niks

LMV - I think she has just got so used to it! When I told her she needed to go to hospital after vomiting faeces she said 'Why? I vomit pretty much everything else' :(

She's right. In her world it is okay to vomit blood - it's just a torn stomach, it will heal. It's okay to vomit crazy coloured bile. It's okay to vomit everything she eats etc!

When she has had small white bowel movements - 'oh don't worry about that'. All the medical professionals really seem so blaze over her symptoms and often make her feel that she is making a fuss!!! She does not find it comforting in hospital because of this.

I also feel that because she does not fit into a neat little box she is being palmed off, because they just don't know what is really wrong with her!

She has said that she will not go back to hospital until her clinic appointment (will see how that goes!)

She has promised to go and see her GP on Monday. I am going to! Maybe he will be able to talk to her as she does trust him and his judgement.

Haha Farmwife! Made me smile :D. Unfortunately she gets it from me, surprised we aren't at logger heads all the time!

Isgs, thanks for this, I will ask about it, but I am guessing even if anything came back, you are right!
 
D

dannysmom

Location
NY
I am glad you are never going back to Swindon. Hospitals that irresponsible are too dangerous. I hope the GP can help get proper medical attention and encourage Jaime to stay at hospital. It is better for the doctors to see first hand just how miserable things are. Is there a better hospital for GI disorders than Oxford that is within a days drive for you? It seems like the Oxford doctors are in over their heads with Jaime's most atypical case.

I hope the rest of today and tomorrow are not too terrible. Good luck on Monday!
 
upsetmom

upsetmom

Location
,
Niks If there's no chance of getting her to the hospital l'd ring up GI on Monday. Maybe if they knew the severity of her symptoms they'll get her in sooner.

:ghug:.. to both of you.
 
xX_LittleMissValentine_Xx

xX_LittleMissValentine_Xx

Moderator
Location
Reading,
I do understand what you are saying Niks. Its worrying that someone can be so ill like that and be treated that way in hospitals in this country. We have come so far in medical science but until you get a solid diagnosis, or a Doctor who will really be on your side its just awful.
When I was being diagnosed I was doing my A levels. When things had started to get more serious I was also getting used to it. My attendance at college was still perfect, when the doctor told me I needed to go for an ultasound scan, I told her I couldn't go because I had college! She said to me "This is serious Holly!" And I was shocked to hear her talk to me like that.
I really hope your GP can do something for her. It sounds like she should be refusing to leave hospital instead of threatening to discharge herself!
 
Niks

Niks

She's back to vomiting loads. Even in night. First thing this morning was same as yesterday, but since been food/bile. She still says she doesn't 'feel' too bad.

Definitely going to GP tomorrow!!
 
723crossroads

723crossroads

Location
USA
Niks said:
She's back to vomiting loads. Even in night. First thing this morning was same as yesterday, but since been food/bile. She still says she doesn't 'feel' too bad.

Definitely going to GP tomorrow!!
Click to expand...
Sorry Niks! Try to have a Happy Mother's day!! Thinking of you both and saying prayers.:ghug:
 
CarolinAlaska

CarolinAlaska

Holding It Together
Niks, you and Jaime are in my prayers! Thinking of you both! I can't believe we are still trying to get your daughter the help she needs 3 months later! Grrr! Your health system sucks!
 
Mehita

Mehita

Niks, would you like us to all fly over, barricade docs from every specialty in a room, and hold a coup? We'll provide the muscle if you provide the wine.

Best of luck tomorrow!
 
Niks

Niks

Thank you everyone!

Mehita - Could you imagine their faces!! lol. I am thinking of taking back up to her appointment on 21st!

We have early appointment this morning, it isn't her GP though, he's not here this week!!

Will let you know what he says! xx
 
Mylittlesunshine

Mylittlesunshine

Hi niks
So sorry jaime is still having problems.
I agree with carolin are health care sucks!!
Hope everything goes ok with the gp appointment.
Thinking of you both Hun x
 
Niks

Niks

GP sent her for blood tests and x-ray. Bloods all fine! Nothing new there.

X-ray showed severely backed up. No obvious obstruction so put it down to dysmotility. They could keep her for obs and enemas! She can do that at home!! Apparently bowel dysmotility is really hard to treat, and there's not much anyone can do!! Great! Poor Jaime.
 
Niks

Niks

Hi! Thanks to you all for your kind thoughts..

Thanks QueenGothel, we are working through videos!! The young lady had a pace maker fitted and a lot of lifestyle changes. Very interesting though, hopefully something may help Jaime.

She had a BM yesterday!! Like small grey pellets, but still!! The most for long time, and was 24 hours after colon prep and 6 senna!!

She's still vomiting lots, but today no faeces!!

I am worried about her mental health. Lots of tears. She rang me earlier and couldn't stop crying :(. To be honest, her life right now really isn't fun!!
 
Last edited:
723crossroads

723crossroads

Location
USA
Sorry to hear Jamie is so sad, but who could blame her? My gosh she could use some real answers and some real help. I can't believe after all this, nothing much has changed. There has to be an answer. I wish you could come over here to the Mayo Clinic! I know they would be able to help her.Sorry for you too as a mother going through the hell!:ghug:
 
Maree.

Maree.

21st is less than a week now, hopefully they've got the approvals for the drug that they think might help and it does the trick for her (or at least shines some light on what is happening.)

I think one of the toughest things about being a parent with a sick child (or young adult) is those times when you need to put on a positive front to support them emotionally (when under the surface your just as distressed or more distressed than they are).

Our thoughts and prayers are with you Niks.
 
Niks

Niks

She's the same.

When she saw the surgeon at the weekend, he said that if she had crohn's she'd be much better off, because doctors would know what to try!!

I actually never thought I'd wish crohn's on my own child, but it is so hard when no one seems to be able to do anything! she would not be left in this state with an IBD diagnosis!! Her GP still has crohn's as a diagnosis from November last year and was so confused when we said that was not the case!!

I really think they need to do a laparoscopy to look at where they saw tethering and where she gets the really bad pain! What does anyone else think of this?
 
You must log in or register to reply here.
Top