CT scan - some thickening of proximal duodenum?

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I agree about the vomit photo and waiting for the biopsies.

My son's scopes look perfect, and it wasn't until the biopsy results (which were Crohn's positive) that we had any answers.

I would definitely call everyday and see if they'll give you answers sooner. I don't understand the ASAP rush, and then the delay in results... Confusing system.

Kimberly
 
Hi niks , dropping in hugs again , I wondered if NHS are still going to hide away from IBD again if ' anal irrigation 'by coloplast would be any better than constant enema's, to keep jamie moving and cleared out and hopefully in that case a bit less sick ? Just throwing ideas in t pan xx
 
Hey. Basically Mayo Clinic just sent me details of international referral. There is no way in this world I could afford to take her/

Fosterschick, at the moment she only uses enemas very rarely. Her bowels are moving better with the Prucalopride . She was being sick even after Colonoscopy clear out last week, so guessing it isn't just the constipation making her so sick :eek2:
 
Has she had a gastric motility study? You eat a radioactive omelette (yum...not..) and then have radio tracer studies taken after to assess how quickly the stomach empties and the nature of its contractility.
Some people who repetitively vomit despite no obvious cause being found have abnormal gastric motility which makes them vomit. It is part of the dysmotility range of conditions. There are meds that can help or a gastric pacemaker works as well but very rarely needed.
I think it may be worth asking for this study if scopes and pill cam are unhelpful. It is a very distinct possibility if you look at all her symptoms/tests so far.
ps I had all the scopes/scans/inflammatory markers and the only thing that found my crohns initially (progressed since then) was a pill cam. I was very anaemic though which led them down the pill cam route.
 
Littlemissh - Thank you. This was discussed a very long time ago but seems to be forgotten about.

I really hope she gets the pillcam soon. How long was it before they did your pillcam test?
 
It was requested when I started becoming very anaemic. Initially I just lost weight and vomited, pain etc. They thought it was my gallbladder as all tests normal but gallbladder removal made minimal difference. I think the pill cam was 14 months after it all started, its all a bit hazy now after so many subsequent tests and pill cams! The gastric motility test was before the pill cam.
 
Once requested it took about 1 month to get the first pill cam and 1 week for the second. (different hospitals). My local doesn't do them so my gastro refers me to one of 2 other local-ish units.
 
Sorry the Mayo Clinic idea doesn't look good. I was hoping that you'd be able to do something via mail/e-mail.
 
J has not had the best week. Her work have not let her in until she gets a detailed letter from the Doctor about what is wrong with her, (if only we knew!!) what meds she takes and how they should deal with fainting etc.

GRRRRR makes me so cross. She just wants to try and get on with her life. Her pain has been so bad. Her vomiting is back with avengence, including some blood. (probably a small tear in stomach). She is losing weight rapidly again. This is just the last straw really. Her GP has written a letter, which she's taking in later. She has been getting really tearful and just really down.

Just to add into the mix, even though she has depo jab and takes contraception pill for breakthrough bleeding has had really heavy bleeding. Sure this is not going to help with iron levels :eek2:
 
Oh my goodness Niks...:(:(:(...this isn't a roller coaster ride for you both but the blessed Twilight Zone! Ugh!

Just wishing more than anything that you had answers and lasting relief for your lass. :ghug:

Dusty. xxx
 
Just wanted to send hugs to you and J. I know all of us here are hoping that there is some relief for her and you both soon and that she able to get some long needed answers! HUGS!!!
 
Just sending hugs!!! :ghug: :ghug: and more prayers that J gets an answer soon!! :ghug:
 
Thank you all. No Kim, I guess we won't know anything until Tuesday.

Her work won't even consider her even going in to work until after her appointment even though her GP has given her a letter!!!
 
Sorry to hear things are still bad. Hope the weekend isn't too bad so she doesn't suffer too much before the appointment. :hug:
 
Thanks for thinking of us!

Kim - she works in a call centre. Incoming calls, so nothing really strenuous!

She's just fed up, she is really tired all the time but finding it hard to sleep because of the pain :-/ . Her weight is still dropping. URRRGGGHHHHH!!! :ybatty::ybatty::ybatty:
 
Thank you all.

Am so glad we're going today. She feels dizzy everytime she stands and is vomiting everything within seconds of eating it again :eek2:

She is managing to keep down fluids, is getting pretty fed up with it all.
 
Hey niks , god you have been to the mill and back a thousand times havnt hype , I don't come on here unles lew is having a flare , don't give up Hun it took four years and a lot of heartache and stress to get someone to find out what was wrong with him , hopefully someone will have answers for you just keep having in there ,xx
 
Thank you everyone!

We've just got back. Scopes and biopsies 'normal' however black spots seen throughout bowel. They have put this down to laxatives!? Has anyone ever heard of this? I have googled and can't find anything.

He is scheduling pillcam asap as he said they couldn't see in small bowel at all.

He also said there is absolutely no evidence of coeliac!

Her vomiting is bad right now. She feels really hungry, but vomits immediately when she eats anything at all!! :ybatty::ybatty::ybatty:

I am glad pillcam is finally going to be done. What if nothing seen on that!?
 
I'm so sorry that you didn't get clearer answers! :ymad: I can't imagine how frustrating this is for you and Jamie.

I don't know what will come next, after a pillcam :( But, hopefully, those images will provide some answers!

I do know that crohns might not show up on a scope or biopsies because inflammation can be microscopic, so not seen visually and, as crohns can affect patches rather than a continuous segment, if the inflammation is microscopic, then biopsies are taken randomly... so, in theory, may miss inflamed patches??? But, I'm not sure how much of a stretch this is or how often it occurs. :confused:

Keeping both of you in my thoughts and good luck with the pillcam!
 
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Hi niks sorry you didn't get much further but glad
The pill can us being done.
You mentioned about black patches if I'm right
I think it's called melanosis coli it's wear the laxative
After using it for too long or to much leave stains behind.
Google it
 
No evidence of Celiac? She's been eating a gluten free diet for awhile, hasn't she? Maybe the villi have healed?

Going out on a limb here, but what about cyclic vomiting syndrome?
 
Last edited:
Ok - have just found out the same.

Mehita, she had been eating gluten free since December, but because at her last appointment she was told there was no evidence, she was eating normal diet three weeks before scopes. He thought that damage would show if she was coeliac.

Her symptoms have never been any different they don't improve at all with her being gluten free, so she just doesn't think it's worth it unless she absolutely has to.
 
She takes Prucalopride daily. Citramag, senna, sodium docusate and magnesium hydroxide. She only takes these if she has to though.
 
Wow that's alot, most likely the senna is the
BiggesT cause of this but other laxative can do
It to from what I've read x
I hope u sort things for her soon x
 
Know in Australia they like adult to being eating these four slicies of white bread for six weeks before testing for caelic. Has she had the genes test?
 
It a blood test. It does not approve caelic but can rule it out. I will posted links went I get to work.
 
Thank you Catherine. All of her blood tests for coeliac were negative, she was diagnosed initially in Swindon with biopsies showing 'coeliac tendencies' . Oxford have never found this, however she was gluten free. She has given up on that for now, as she is so fed up with it making no difference and as Oxford say they are not convinced, neither is she!!
 
This is not the standard blood test for coeliac. It is test to see whether she carries the either of the two genes for coeliac disease. Not everyone who carries these genes will develop coeliac disease.

I think a negative genes test would rule out coeliac disease.

http://www.coeliac.org.au/coeliac-disease/

Who gets coeliac disease?
Coeliac disease affects people of all ages, both male and female.

You must be born with the genetic predisposition to develop coeliac disease. The most important genes associated with susceptibility to coeliac disease are HLA DQ2 and HLA DQ8. Either one or both of these genes are present in virtually every person with coeliac disease. While 30% of the population carry one or both of these genes, only 1 in 30 of these people (approximately) will get coeliac disease.

A first degree relative (parent, sibling, child) of someone with coeliac disease has about a 10% chance of also having the disease. If one identical twin has coeliac disease there is an approximate 70% chance that the other twin will also have coeliac disease (but may not necessarily be diagnosed at the same time).

Environmental factors play an important role in triggering coeliac disease in infancy, childhood or later in life.
 
I tried Holly, but he skipped over it saying they were scheduling a pillcam.

She is still vomiting everything except fluids :(. Also had a lot of blood in BM and some pretty big clots. Bleeding and clots dark red. Could this be from small bowel?
 
Pill cam or no, diagnosis or no, this girl is sick and losing weight - what about treating her symptoms now with bowel rest and TPN? From there move to EEN until she can hold that down and food is moving through right and later start on food. Someone needs to do something other than trying to diagnose her and giving her 5 laxatives that obviously aren't resolving anything... Sheesh!
 
I agree, it is ridiculous leaving her like this. As much as she hates hospital (and I don't blame her) they should admit her, do full EN and rest her tummy and intestines and try different meds till she improves and puts on some weight. Any idea when the pill cam will be?
 
CarolinAlaska said:
Pill cam or no, diagnosis or no, this girl is sick and losing weight - what about treating her symptoms now with bowel rest and TPN? From there move to EEN until she can hold that down and food is moving through right and later start on food. Someone needs to do something other than trying to diagnose her and giving her 5 laxatives that obviously aren't resolving anything... Sheesh!
Click to expand...

By the way, I in no way am criticizing you with this Niks, just that health system you are stuck with :(!
 
I agree with you all!

Kimberly, they think that as we have managed to get her vomiting under control before that Cyclic Vomiting Syndrome is unlikely however I don't think they've ruled anything out.

I can see her being admitted very soon. She is now struggling to keep down fluids and is getting chest pains again. :ybatty::ybatty:

She doesn't think that she is really backed up because has been going at least every other day, sometimes every day. So a little baffled by this. I am thinking that she probably is really backed up.

She called GI Secretary and left a message this afternoon, but if no improvement over night will take her to A&E :ymad: yet again
 
Niks said:
Thank you everyone!

We've just got back. Scopes and biopsies 'normal' however black spots seen throughout bowel. They have put this down to laxatives!? Has anyone ever heard of this? I have googled and can't find anything.

He is scheduling pillcam asap as he said they couldn't see in small bowel at all.

He also said there is absolutely no evidence of coeliac!

Her vomiting is bad right now. She feels really hungry, but vomits immediately when she eats anything at all!! :ybatty::ybatty::ybatty:

I am glad pillcam is finally going to be done. What if nothing seen on that!?
Click to expand...

I just read on this forum to make sure they do a dummy cam first so the pillcam doesn't get stuck in the intestines anywhere.
 
Kimberly she is back to where we were in March when she was completely gluten free. I just don't think this is causing her problems. Her biopsies were clear even with her being pretty sick.

At the moment she is not eating anything with gluten in just in case but she is still getting worse.

Rosalee - she has to do colonoscopy clearout before doing pillcam. That's if she can tolerate it and at the moment that is looking doubtful :(
 
She took herself to emergency care last night to get injection to stop vomiting. It worked overnight, but now back to vomiting within minutes of eating or drinking anything. :ybatty:

Trying to convince her to go to A&E - again :eek2:
 
A&E not impressed that Gastro not bringing her in, say she shouldn't have to go through A&E.

Gastro on call absolutely awful.. He asked her if she 'thought' she needed to stay in. She can't even hold down a mouthful of water! He won't do x-ray as they know it is constipation. Hmmmm!!! Well she has been going regularly and her pain is no where near as bad as when she is really constipated.

The have put her on IV fluids, given her IV anti sickness and some pessaries, which did nothing but come straight out! GRRRRR
 
Hi Niks,
I have been off for a few days. Sorry to hear she is so poorly again. Soo happy to hear they finally agreed to do the pillcam. I want to second what Carolina Alaska said about getting her admitted and off of food to have bowel rest. Get them to hook her up to IV and nutrition given by IV as well this poor girl has been through enough already they need to just admit her and take care of her.
 
The gastro on call sent her home saying this should be dealt with as an outpatient !! Seriously! What an absolute idiot.

How can she function if she can't tolerate fluids! Poor J is not happy. She hates being in anyway, but to be made to feel that she shouldn't be there! GRRRRR.

He told her to call her GI"s secretary tomorrow :ybatty::ybatty::ybatty::ybatty:

NOT happy :(
 
How hard will it be to get her to London? Someone has to help this poor girl. If she can't even tolerate liquids, what the hell is she supposed to do?

My heart just breaks for y'all.
 
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What a nightmare.....You are both in my thoughts.

I agree with Mehita. I think her problems are bigger than Swindon can deal with and you need to get her to a major medical area. I see this was discussed many pages earlier on this thread, and taking her to the US is out of the question (understandable!), but would London work b/c it's within the health system?

May answers and healing come SOON.
 
Hi nicks,
My sister is under prof forbes at University college London he is top Crohns prof in uk and leactures all over world. we are in esat sussex your daughters GP canot refuse to refere her to London. think after all this time she needs a notch up on doctors. good luck Katie
 
GPs are not able to refer to most tertiary referral centres in the UK,unless you live in that hospitals catchment , only secondary care can. ie one of her current gastroenterologists. Thats how i was seen at both Addenbrooks and ST Marks, my current gastro referred me for their opinions.
 
Our GP refered her originally to st marks and she was under then for several years had recection and went into remission so was refered back to local gastro. when she started to deteriate she was then refered back to UCL neither are are local London hosp that area is linked to that is Guys/st thomas
.So its worth a word with her GP.. I am an ex nurse and have worked for years on medical wards and have seen numerious Consultants take months to diagnose poor crohns patients so when my son was ill I was like a dog with a bone, in fact the paed gastro told Louis at our first appointmant post diagnosis to thank me for being so persistant as he was very suprised at diagnosis and would not have persisted if not for me nagging.:ybatty::ybatty:
 
Kim - we did go straight to Oxford!

I think London may be the way to go if pillcam doesn't happen soon, but not sure how that'll work with severe vomiting. :eek2:

She's been pretty poorly. No urine yesterday at all orthis morning. GP called Oxford. So she's now on fluids and IV anti sickness and looks remarkably much better. She has chosen to go home after this bag, but GI calling GP about getting her anti sickness injections.

They are also organising stomach emptying test. Which she has never had, although was discussed and pushing pillcam! So although not out of the woods they are trying!!
 
So pleased that you are pushing pill cam sometimes affected area just to far in for scopes, my sisters crohns is in her jejunium no scope bar pill cam can reach that so it took over a year to diagnose, she has very simular symptoms to Jamie when she is obstructing stomach swells up vomits back all she eats even if its days later does not go past her stomach. so glad she is rehydrated make mega fuss if she stops passing urine again she must keep hydrated kidneys are not to be messed with, poor love and you sounds a nightmare. she also needs MRI
 
Niks,
I am so glad to finally hear that they are doing something. Sure took them long enough. Keep pushing! I am glad they are rehydrating her. No urine is always a very worrying sign. Did you tell her regular doctor what happened over the weekend? Maybe they could put a note in her chart so if she gets admitted on a weekend the doctors know to take it seriously and not just push her out the door.
 
Yes her GP was pretty horrified! I just hope that they can get vomiting under control. She has lost 11lb in under 2 weeks :eek2:
 
After all this, I'm amazed she still has 11 lbs. to lose! I hope this new thinking gets her somewhere Niks!!
 
Dex when she went through that long period of no vomiting her weight went up to 8stone 12. She is already down to 8stone 1 but at her lowest was just over 7 stone. Just hoping that she doesn't go that low again! Over a year ago she weighed around 9 and a half stone. :eek2:
 
Ok - Jaime had an up and down week. Has been tolerating fluids but not really food. She now had pain in lower RIGHT abdomen! FFS. This is new and is spreading round to back. She has visable blood in urine. Which she says has been there since Thursday.

She is waiting for Out of Hours Dr to call back, but my guess is she's picked up a urine infection from being dehydrated and not being able to pee at all!

Poor bugger :(
 
Luckily she doesn't have an appendix!

The Out of Hours GP diagnosed her with urine infection and has prescribed anti-biotics over the phone! She had to take a urine sample in which looked like Rose wine! Very pretty, but clearly not right.
 
Right I had both but since urine was positive and no one bother to do a simple ultrasound
It went un treated for a long time while it grew.
 
Hi Niks,
People are often very sick (fever and malaise) with kidney infections and they often have a lot of pain. There is a test that you can do to check if it may be a kidney infection. Make a fist and use the motion as if you were pounding on a door (not knocking, which would have your first turned 90 degrees from the motion that I am suggesting) to thump gently on each flank. Give one quick, firm thump and pause for a reaction before doing the other side. With a kidney infection the vibration from the thump will bring on the pain. This does not usually happen with a bladder infection.

Because of Jamie's poor condition already, I would not mess around at home with a potential kidney infection. People can have serious complications from them. I would insist that her electrolytes are done at the hospital.
 
Niks,
I second what Happy said. Check it out and if she is positive for that back pain take her right in. Kidney infections usually need IV antibiotics at least for a day or two.
 

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