CT scan - some thickening of proximal duodenum?

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Niks, I too am disgusted at the way Jaime has been and is being treated by health care professionals. Your poor girl must feel completely helpless :( I wish we could all come camp out on the GI's lawn! ((((hugs))))
Devynn's blood work etc always comes back normal too. It's so frustrating when you KNOW there is something going on, and they read the numbers and look at you like.. oh well. We were in yesterday and they said her blood all came back looking great, and because her MRE from DECEMBER.. and upper and lower scope from JAN 2012!! looked good, they will just see how things go (no changes) until July. THEN they want to take her off all meds and see what happens. I just don't get it. I have emailed her NP and asked for copies of all the blood work they did last week, and then the results of the blood work from yesterday. So frustrating!

(((((hugs))))) for you and Jaime. You HAVE to get answers soon!
 
Samantha - that's pretty shocking too!! Really hope you get it sorted.

Have just spoken to one of the registrars in Oxford. He's finding her a bed and we're going up tonight..
 
That's wonderful news. Try to get them to do a pillcam. Beg, borrow or steal to get it, whatever it takes. Something is wrong in there!
 
So glad there admitting her
Tell them your not leaving till
They find out what is wrong x
Hope Jamie gets some relief and
Answers soon x
Please let us know how it goes
Hugs x x
 
Only just back. Jaime really not happy about being in again!

She has not really had a proper BM since the very first colonoscopy prep 2 weeks ago! Not good. She saw one of the GI's who was looking after her last time she was in. He is convinced she has a 'global gut dysmotility disorder'. It sounds pretty much like gastroparesis.

He also said that it is really hard to treat this condition! He took her bloods, but is sure they will come back normal (me too, they always do!).

It sort of makes sense, but frustrating that there isn't very much they can do to help her! Anyway for now they are going to keep her in and get her cleared out, they are working out tomorrow the best way to do this!

The nurse took initially 4 attempts to fit a cannula, and failed. She then tried twice to get bloods with a butterfly needle, still nothing!

The Doctor finally did it on his second attempt. Lucky she has got over her needle phobia!
 
My friend has that from diabeties. She is never hungry she says. But, I don't recall he throwing up. But she may just not of told me.Hoping they can find something to help your poor daughter. Maybe still do a pillcam? Just to be safe?
 
Identifying the Cause of Gastroparesis

Recommendations


Patients with gastroparesis should be screened for the presence of diabetes mellitus, thyroid dysfunction, neurological disease, prior gastric or bariatric surgery, and autoimmune disorders. Patients should undergo biochemical screen for diabetes and hypothyroidism; other tests are as indicated clinically. (Strong recommendation, high level of evidence)
A prodrome suggesting a viral illness may lead to gastroparesis (postviral gastroparesis). This condition may improve over time in some patients. Clinicians should inquire about the presence of a prior acute illness suggestive of a viral infection. (Conditional recommendation, low level of evidence)
Markedly uncontrolled ( > 200 mg/dl) glucose levels may aggravate symptoms of gastroparesis and delay gastric emptying. (Strong recommendation, high level of evidence.) Optimization of glycemic control should be a target for therapy; this may improve symptoms and the delayed gastric emptying. (Moderate recommendation, moderate level of evidence)
Medication-induced delay in gastric emptying, particularly from narcotic and anticholinergic agents and glucagon like peptide-1 (GLP-1) and amylin analogs among diabetics, should be considered in patients before assigning an etiological diagnosis. Narcotics and other medications that can delay gastric emptying should be stopped to establish the diagnosis with a gastric emptying test. (Strong recommendation, high level of evidence)
Gastroparesis can be associated with and may aggravate gastroesophageal reflux disease (GERD). Evaluation for the presence of gastroparesis should be considered in patients with GERD that is refractory to acid-suppressive treatment. (Conditional recommendation, moderate level of evidence)
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from:
http://gi.org/guideline/management-of-gastroparesis/
 
Diagnosis of Gastroparesis

Recommendations


Documented delay in gastric emptying is required for the diagnosis of gastroparesis. Scintigraphic gastric emptying of solids is the standard for the evaluation of gastric emptying and the diagnosis of gastroparesis. The most reliable method and parameter for diagnosis of gastroparesis is gastric retention of solids at 4 h measured by scintigraphy. Studies of shorter duration or based on a liquid challenge result in decreased sensitivity in the diagnosis of gastroparesis. (Strong recommendation, high level of evidence)
Alternative approaches for assessment of gastric emptying include wireless capsule motility testing and 13 C breath testing using octanoate or spirulina incorporated into a solid meal; they require further validation before they can be considered as alternates to scintigraphy for the diagnosis of gastroparesis. (Conditional recommendation, moderate level of evidence)
Medications that affect gastric emptying should be stopped at least 48 h before diagnostic testing; depending on the pharmacokinetics of the medication, the drug may need to be stopped > 48 h before testing. (Strong recommendation, high level of evidence)
Patients with diabetes should have blood glucose measured before starting the gastric emptying test, and hyperglycemia treated with test started after blood glucose is < 275 mg/dl. (Strong recommendation, moderate-high level of evidence)
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Exclusion Criteria and Differential Diagnosis

Recommendations


The presence of rumination syndrome and/or eating disorders (including anorexia nervosa and bulimia) should be considered when evaluating a patient for gastroparesis. These disorders may be associated with delayed gastric emptying, and identification of these disorders may alter management. (Strong recommendation, moderate-high level of evidence)
Cyclic vomiting syndrome (CVS) defined as recurrent episodic episodes of nausea and vomiting, should also be considered during the patient history. These patients may require alternative
therapy. (Conditional recommendation, moderate level of evidence)
Chronic usage of cannabinoid agents may cause a syndrome similar to CVS. Patients presenting with symptoms of gastroparesis should be advised to stop using these agents. (Conditional recommendation, low level of evidence)
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Management of Gastroparesis

Recommendations


The first line of management for gastroparesis patients should include restoration of fluids and electrolytes, nutritional support and in diabetics, optimization of glycemic control. (Strong recommendation, moderate level of evidence.)
Oral intake is preferable for nutrition and hydration. Patients should receive counseling from a dietician regarding consumption of frequent small volume nutrient meals that are low in fat and soluble fiber. If unable to tolerate solid food, then use of homogenized or liquid nutrient meals is recommended. (Conditional recommendation, low level of evidence)
Oral intake is the preferable route for nutrition and hydration. If oral intake is insufficient, then enteral alimentation by jejunostomy tube feeding should be pursued (after a trial of nasoenteric tube feeding). Indications for enteral nutrition include unintentional loss of 10% or more of the usual body weight during a period of 3–6 months, and/or repeated hospitalizations for refractory symptoms. (Strong recommendation, moderate level of evidence)
For enteral alimentation, postpyloric feeding is preferable to gastric feeding because gastric delivery can be associated with erratic nutritional support. (Conditional recommendation, low level of evidence)
Enteral feeding is preferable to parenteral nutrition. (Conditional recommendation, low level of evidence)
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from
http://gi.org/guideline/management-of-gastroparesis/
 
Niks-
There is a lot more there in the link-
hope it helps-
I know a few children (young) with it- they have tubes and get botox among other things.

Good luck and hugs
 
Mylittlesunshine said:
So glad there admitting her
Tell them your not leaving till
They find out what is wrong x
Hope Jamie gets some relief and
Answers soon x
Please let us know how it goes
Hugs x x
Click to expand...

I agree. It's time to stop being polite. Since Jamie is an adult, the hard part is going to convince her that she needs to put her foot down and say she isn't leaving until they come-up with a better treatment plan and start asking different questions that will lead to new ideas!!!
 
Niks said:
She has not really had a proper BM since the very first colonoscopy prep 2 weeks ago! Not good. She saw one of the GI's who was looking after her last time she was in. He is convinced she has a 'global gut dysmotility disorder'. It sounds pretty much like gastroparesis.

He also said that it is really hard to treat this condition!
Click to expand...

There must be some kind of treatment. No one can go on being constipated, vomiting, loosing blood and loosing weight.

Maybe a temporary colostomy bag? Maybe total gut rest by putting her on TPN (IV nutrition) and nothing by mouth??? At least then she would be able to pass what needs passing and she would receive the full benefit of the nutrition.

I am lifting you both up in prayer!!!
 
vtfamily said:
There must be some kind of treatment. No one can go on being constipated, vomiting, loosing blood and loosing weight.

Maybe a temporary colostomy bag? Maybe total gut rest by putting her on TPN (IV nutrition) and nothing by mouth??? At least then she would be able to pass what needs passing and she would receive the full benefit of the nutrition.

I am lifting you both up in prayer!!!
Click to expand...

Me too!:ghug:
 
Sorry to hear Jaime is back in again. I really wish they would manage to find something to help. You would think they would be consulting other hospitals/specialists around the world trying to see what treatments there might be even if it is unusual. I agree it would be worth asking about some sort of nutrition that cannot be vomitted up. If they can at least try to get her body back some of it's weight/health! Fingers crossed they come up with something new!
 
MLP, thank you for all the links! I have read through a few, I found some last night, but think you've found more!! Will read the rest tonight xx

Just heading back. As she's not yet on the gastro ward hoping to catch the Doctor when he comes round! J and I have discussed cutting out solid food. I think she would do anything if it would help!

For right now they need to work out how they are going to clear her out and then we need to then work out how to keep her going!!

She does have a really good dietician, Jaime has her number so if she doesn't see her in hospital she can call her.

She has been moved to a private room! I guess there are no NHS beds available right now, so at least she has her own bathroom, which will be good, hopefully she will need to use it lots today!!!

Thank you for all your advice, support and good wishes xxx
 
So so sorry to hear all that is going on still, and agree with all the above, dreadful treatment she has received, and hopefully this time they can have some answers, if not stay in that bed, as much as she hates it, and say not good enough, you both need answers, she cant go on like this.

Fingers crossed for a positive day today for you both, sending hugs and support from Cambridgeshire x
 
We're both just back!

Massive melt down from Jaime, so they let her come home and do the prep, she really didn't want to stay in hospital!!

He has given her 6 sachets of Citramag. She has been told to take 2 at a time with 5 senna. If that doesn't get her moving then I really think there's no hope! She has to repeat tomorrow night if she thinks she needs too! Two more for back up.

Oxford are going to liaise with Swindon, (not her original Doctor, we made our feelings pretty clear about him!) and if she needs to be admitted again they will advise Swindon what needs to be done. Her Clinic Appointments still in Oxford.

She has also been given Magnesium Hydroxide and has to add 45mls of this at night time.

The Doctor said they will probably add Prochlorperazine at her next appointment, but want to wait until she is more stable to do this. (Need to research this, never heard of it!)

Surgery is an option, but it is the last line really, so they would rather not do it as it isn't that successful!

So, home, one very stressed daughter and I am in need of a very large glass of something!! :ymad:
 
Oh Niks, it seems so difficult I'm sure. Sorry you got no definitive help there. But lets just hope the prep works this time and doesn't make her sick. Sorry hun!!!:ghug:
 
Okay. New plan. Can you request to have a second opinion? Out of country? There are many, many choices, but I'm thinking the MAYO clinic could shed some light on the situation. Also, in these situations, I am not opposed to using the media (news or reality tv) to point a gigantic glaring light on the problem. That has a way of shaming people into stepping up and doing the right thing!!!

Just feeling so awful for both of you.
Cheryl
 
I am confused - did the doc send her home or she insist on leaving??
She really needs to let them help her.
The best place for that is at the hospital.
Hugs
Hope the clean out works
 
MLP it ended up being a mutual decision. She has never had a meltdown like that before and was upsetting to see. The Doctor said to her that she could stay in to have the prep if she wanted to, but also could do it at home if she would feel better about it.

I think this is why they want to liaise with Swindon, so that we can get there quicker if we need to.

We saw two different Doctors when we were there and they both think that her condition is something that needs to be managed at home. They were encouraged that her vomiting is much better (up until this week). They both think that once she is cleared out properly, her bowels, with the right meds and laxatives, should start working, even if slowly. WHAT ABOUT HER PAIN?? It should ease off when things settle down!? Really? How long is that going to take? No one could say! Tethered bowel looked much better on MRE so that is not causing problems (not convinced)

I said that I was concerned that her bowel may perforate and then we would have a serious situation, he assured me that this is very unlikely to happen.
 
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Good grief Niks! You poor things. :(

I hate that your lass is still having to deal with all this, you must be beside yourself hun. :ghug:

I so hope the clean out works...and that if they are expecting you to deal with this at home that they have given you clear and explicit instructions of what to look out for and when to seek help.

Good luck Niks! Fingers, toes and everything else crossed!

Dusty. xxx

PS. If a pill cam is ever on the cards, in view of her constipation/obstructive type symptoms be sure they do a dummy run first. :)
 
They are still say pillcam is not necessary! They are happy with this diagnosis. J has been told first signs of vomiting to take the colonoscopy prep. She doesn't have to take enemas daily though as they feel she is blocking further up, which is why they're no longer working! She can use them if she feels she needs to, but she is happier with that, as she was getting so sore, and all that was coming back out was the enema!

Just looking through her bloods from yesterday. All pretty normal, but her alkaline phosphatase levels were 225 IU/L.. I don't know what this means, but from what I can see this is high for a female adult? Female 42 - 98 IU/L
Male 53 - 128 IU/L


Anyone got any ideas on this?
 
A high ALP can be associated with a number of conditions but the main ones are bone or liver disorders. It may be glitch so if it is of concern then have LFT's redone.

Where is Jamie at with puberty? Did she start late?
...if it is an isolated raised liver result then you can't rule out that is related to Jamie's growth. ALP is frequently elevated during puberty and growth spurts.

Dusty. xxx
 
Thanks for this. She's definitely stopped growing Dusty and wasn't late with puberty. Hospital didn't say anything about this result so I guess they don't think it's a problem. Especially as everything else okay??

X
 
Okay, just looked at Jamie's med list and both narcotics (oromorph) and tricyclic antidepressants (amitryptyline) can raise the ALP in isolation. That may be why the hospital is unconcerned and they will be happy to just monitor it.

Dusty. xxx
 
Niks said:
They are still say pillcam is not necessary! They are happy with this diagnosis. J has been told first signs of vomiting to take the colonoscopy prep. She doesn't have to take enemas daily though as they feel she is blocking further up, which is why they're no longer working! She can use them if she feels she needs to, but she is happier with that, as she was getting so sore, and all that was coming back out was the enema!

Just looking through her bloods from yesterday. All pretty normal, but her alkaline phosphatase levels were 225 IU/L.. I don't know what this means, but from what I can see this is high for a female adult? Female 42 - 98 IU/L
Male 53 - 128 IU/L


Anyone got any ideas on this?
Click to expand...

My friend had that and she got chelation done to her blood.
Another friend has ammonia way too high and it was her liver.
I would do some research on that. There are things that will help balance it out.Her PH balance is off. Ask David, I know he would know.
 
Hi Niks,
Sorry I have been out of the loop for the past week. I can't believe they still don't have a firm diagnosis for your girl. As someone else said is there anyway you can get an out of the country opinion? Also some specialists may be willing to look over her records and decide if she needs further testing etc. so you would not actually have to go there, unless they decide it is necessary.
 
This weekend she has drank two sachets of prep with 5 senna and after around 4 hours did an enema to start her off, which finally seemed to work.

The Doctors are convinced that she has a gut dysmotility disorder, (probable Small Bowel), I don't think this is the same as gastroparesis as that is more related to the stomach emptying! Been on Computer a lot researching!

My concern is that her symptoms started the opposite with very loose stools with blood and mucus. Now though she doesn't seem to be able to get her bowels moving at all on her own. She hasn't had any bleeding since around February time.

The Doctors think that this is a reliable diagnosis, but it is hard to treat! Jaime and I are on our own and financially struggling, I don't know how some of you guys cope without an NHS!! If I could pay for a pillcam test I would do it in a heartbeat, just for peace of mind, but there is no way I can do this. So going out of Country is probably not an option for us :(.
 
So sorry to hear that things aren't getting any better. Wish there was a quick fix.

The medical team your dealing with now sound like they are on the ball. I don't think you should feel bad that you can't afford to take her elsewhere, she is being treated by a team at a top hospital and my impression from what you've written is they are taking her symptoms seriously and working hard to find something that's going to help.
 
Just wanted to touch base, sorry everything is still so unknown for you. About gut mobility... They thought Rowan might have that as well. When I spoke with her surgeon about it, and at the time she had the pamphlet for the hospital to go to for mobility issues. Anyway... She told me that the only way to assure a mobility disorder of the small intestines was to do an ex-lap to check for obstructions and if non are found then to take muscle and tissue samples. These muscle sample are what they need to determine if there in fact is a mobility issue. Then we did the ex-lap and they found the omentum was strangling her small intestines like a spider, this is when she had an omentumectomy. I know that rowan's situation was very rare as she had no surgeries in the area that had been so strangled. I would keep prodding the doctors though, they we talking about a GI pacemaker. I know you said you cannot travel, but this website had some interesting information on it.

http://www.nationwidechildrens.org/motility-center
 
Hi Mary

This is really interesting! She has not had anything really to confirm that this is the case. They are going on the MRE. I still think that there are problems where she has the pain and her appendix out! Her next clinic appointment is on 21 May.

They said last time that there is another test they can do, but I have heard nothing again about this.

Thank you! Will be asking for sure xx
 
I have been away, but just caught up on your thread. I so sad to hear that J is still having issues. I hope they are able to get to the source soon and get her to feeling better.

I know you and her both are probably emotionally spent and stressed. I feel for you so much and you are both in my thoughts and prayers!!
 
What I took from that is there is a definitive test that Jaime could have to prove one way or the other! I hope they don't choose to "open her up" first like they did that poor girl before running that test!! Hey, it's something to consider Niks! Fight like hell!
 
Wow, that story really does sound familiar (as does the "doctors thought it could be all in her head" - drives me mad!). Certainly something worth looking into and fighting for if necessary!
 
I really hope they figure it out and soon. It is tough seeing your kid deal with this. I was a wreck when Rowan was going through that. I totally feel your pain.:ghug:
 
Another rarer and more global gi motility disorder is pseudo obstruction - which is apparently a heterogeneous group of disorders of varying severity, course, cause and response to treatment. http://digestive.niddk.nih.gov/ddiseases/pubs/intestinalpo/ Not sure if J's doctors have considered this.

Here's the first page of a review article; one author is Nikhil Thapar, University College London, Institute of Child Health,Neurogastroenterology and Motility, London, UK
http://link.springer.com/static-con.../chp%3A10.1007%2F978-1-60761-709-9_22/000.png
 
Maree. said:
It does sound like Jaime. While looking up more details on gastric pacemakers I found the NHS Choices page on Gastroparesis, which does mention this as a treatment option and links to a document with more details.

http://www.nhs.uk/conditions/gastroparesis/Pages/Introduction.aspx

Also on the page is a list of the tests used to diagnose Gastroparesis, was curious as to which of these Jaime has had.
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Maree, just read this page. I think Jaime has been diagnosed purely on the fact that her bowels just don't seem to be working and MRE is clear. I am not convinced still that there is not some sort of obstruction where her pain is and where they saw the tethering of bowel on her CT scan!

I really want to push for pillcam. Her pain is really bad at the moment, and without the colonoscopy prep she doesn't have bowel movements at all!

My concern was perforation of bowel, but have been assured that this is very unlikely to happen.. Hmmmm, well it has happened to people, and if her bowels aren't moving surely this is possible?
 
My brother's bowel burst open years ago and he was in so much pain, he couldn't even move. The bile had to be removed through a tube down his nose into his gut for 10 days. He easily could've died had he not gotten to the hosp on time. He had diverticulitis and thought it was stomach flu. That is until the pain got that bad. I really hope your daughter can get a pillcam just for peace of mind. I also hope they figure out why her bowel is not working at all. I never heard of that!:ghug:
 
I agree you need to keep pushing for more tests. If they are saying gastroparesis is a possibility they should at least do some of the tests that are appropriate for diagnosing that.
 
Hmm, her pain is bad, she can't walk.. Her legs don't feel like they work! She wants to see if morphine will help before calling hospital. Friday nights are not great are they with hospitals.

I am convinced there is something blocking in lower left abdo.

She doesn't ever feel the need to go for a BM, so says she doesn't FEEL constipated. It isn't like she has the urge to go and is straining. UURRRGGGHH so frustrating. She is now vomiting 6 + times a day. Not as bad as at her worst but still concerning. Will need to do another colonoscopy prep this weekend I guess
 
Niks sounds like you need to go to hospital and some how manage to convince Jamie to stay. Thinking and praying for you both. God Bless.
 
Niks said:
Hmm, her pain is bad, she can't walk.. Her legs don't feel like they work! She wants to see if morphine will help before calling hospital. Friday nights are not great are they with hospitals.

I am convinced there is something blocking in lower left abdo.

She doesn't ever feel the need to go for a BM, so says she doesn't FEEL constipated. It isn't like she has the urge to go and is straining. UURRRGGGHH so frustrating. She is now vomiting 6 + times a day. Not as bad as at her worst but still concerning. Will need to do another colonoscopy prep this weekend I guess
Click to expand...

You know Niks, when I had diverticulitis ,my pain was in lower left bowel.
It was very painful and I could not move my bowels and didn't feel like I had to go. Just terrible pain. Went to ER and they did a catscan w/contrast and could barely see the pocket of intestine that was probably infected. They put me in hospital for five days and pumped me full of antibiotics and I wasn't allowed to eat any solids till my bowels moved normally again. Did they check her thoroughly for this too? You have me wondering if she has that!!!When you have diverticulitis nothing can pass through because the bowel swells shut. That would explain everything coming back up too. I would put her on all liquids for now. Jello, broth,water,popcycles, etc....Pudding.
 
I guess they are not too concerned with how many of these preps she is having to do but I would be a little concerned can they be harmful after a while? Having to take Morphine shows how severe her pain must be, the poor love.
 
Niks,
I agree with the others. Sounds like it is time to take her back to the hospital and demand they do more tests before they release her again. It is ridiculous that they are giving her a diagnosis with out proper testing and evaluation.
 
Ps, Niks
I was worried about the safety of using a colonoscopy prep so often. I cannot find anything on the Internet about it. Please make sure she is hydrating well when she is doing these treatments.
 
She is much more comfortable now!

I agree, I am concerned about the colonoscopy prep too. I guess they've used this before with other patients, but will discuss it properly when she has her appointment in May.

Have a whole load of things to ask, list is getting longer!!

:eek2:
 
Thinking of you and your girl Niks and hoping for solid answers and relief soon, bless you both...:ghug:

Dusty. :heart:
 
Quick update;

Poor Jaime has been in agony with really bad back pain and pressure. Her bowels not opening, even with the colon prep. The hospital have spoken to GP and she's trying a different colon prep (picolax). Her GP is not very impressed with this, as taking colonoscopy preps all the time can thin the bowel lining! She can't keep backing up like this though.

Weirdly she is only vomiting between 2 and 6 times a day, which is no where near as much as she has in the passed.

She's recently started getting really bad heartburn to add to everything else. We are hanging in for her appointment on 21st, but am really worried that they won't have a plan for her :ymad:
 
The 21st seems like an awfully long time away. Is there any chance you can get her seen earlier if you let them know how bad things are?
 
Maree, they know! Jaime has called and spoken to Oxford. Last time she was admitted overnight, they basically said this is something that she needs to be able to manage at home, with the help of her GP (who luckily is really good).

I have researched so much over the last few months and although gastroparesis fits in some ways, it doesn't seem completely right. It doesn't seem that it is her stomach that is the whole problem. Oxford are saying bowel dysmotility disorder, but haven't officially given us an actual name. One GI said gastroparesis, am thinking after a lot of searching. Chronic Intestinal Pseudo-Obstruction, which has been mentioned before.
 
He has told Jaime to call him or go and see him at any time. He has contacted Swindon in case she need urgent attention. Although she has told him she will not see her original GI... Ever!
 
I know psedo-obstruction is possible because they told me Rowan had that a couple of times. For me it is a diagnosis of we don't really know what is wrong. It is like saying someone with IBD has IBS. There has got to be a reason whether medication, mobility or obstruction. Something?! Sorry end rant. I hope she and you find some answers soon. I hate the undiagnosed situation, I know it isn't the doctor per se but it still is something I hate. Again just something I think in my experience. :ymad:
 
The last time she had an outpatients it was just one doctor! I guess it will be the same
 
It sounds like a fabulous idea, but I know that getting an appointment with one doctor is like gold dust! I will ask though..
 
Niks said:
Maree, they know! Jaime has called and spoken to Oxford. Last time she was admitted overnight, they basically said this is something that she needs to be able to manage at home, with the help of her GP (who luckily is really good).
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I'm sure that'd be fine by Jaime and you!! But if those $&^(&)&%^ers can't tell her how to do that then what is she supposed to do. I can't imagine vomiting 2-6 times a day and thinking….oh well, that's better than it was before so I'm okay!! This is supposed to be the best time of her life!!! She can't keep going like this!
 
Niks,

Been thinking of you and Jamie. Gus and I have been in the hospital for 14 days. Looks like we will be here another week. Hope to finally have a period of remission fter this.

Cheryl
 
vtfamily said:
Niks,

Been thinking of you and Jamie. Gus and I have been in the hospital for 14 days. Looks like we will be here another week. Hope to finally have a period of remission fter this.

Cheryl
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poor Gus and poor you. Hope he is feeling better reaaly soon. :ghug:
 
Niks, I just can't imagine seeing your child so sick for so long and being put off like that. Your daughter must be made of steel to be able to hold up to the neglect! I'm so sorry she is still so sick! I don't have much hope for the appt on the 21st. If they know what to do with her they'd be having her do it now, wouldn't they? Is all of the UK like that? You can't see your established doctor for months between appts? Even if recently discharged? That is nuts!
 
Carol and Mark

It is really frustrating and I feel like I am bashing my head on a brick wall whenever we see the Doctors. They are all really lovely any sympathetic but we do not have any answers!

What is worrying me at the moment is that the colon preps are not working at all! Nothing coming out. Surely this cannot be good.

It is Jaime's 19 year old friends funeral tomorrow, so she is more concerned about being well enough for this. :( (so so sad) She has to travel up there tonight and is staying until Saturday because it is a 4 hour drive.

She has promised me that she will talk to her GP about the prep not working this morning, but I really don't think he will convince her to do anything but go with her friends to say goodbye to her very lovely friend.
 
Niks, make sure she has the details of the nearest emergency room in case things go seriously wrong while she's away then let her go. I think emotionally it's really important to get to funerals of people who've been important to you, to be able to share your grief with other people who loved them and get some sense of closure.

But when she gets back if things haven't improved perhaps you need to push her about another visit to emergency and staying in hospital as long as they are prepared to keep her. Sounds like she gets more comprehensive & timely care when she's admitted than when she heads to an appointment and is reviewed by a single doctor.
 
Is she travelling with a friend? It may be a good idea for that friend to have instructions for if things go wrong.
 
Yes she's travelling and staying with some good friends. They have hospital details and emergency numbers in their I phones!!
 
Poor Jaime. I am sorry about her friend - so sad.

I feel for you (and your poor head banging against the wall). I have some questions (because I forget things) -
- Jaime's ESR and CRP have always been normal?
- Oral steroids helps Jaime, right?
- If so - do the doctors explain why steroids would help a motility issue, if the motility was not due to an inflammatory condition?
- Has there been any talk of trying biologics like Humira?

I am really glad the doctors now seem caring and supportive - I am sure they are doing their best.
Hugs!!!!
 
Hi Jeanne

The only levels that have ever come back low are IgA, potassium and B12. Everything else normal.

when first on pred she improved so much!! Everytime she tapered to 20mg she started getting symptoms back again. However the last time she was put on 30mg she didn't improve. When she had her MRE she gad been on some dose (between 5-30mg for 6 months). Her MRE was clear, although inflammation was seen on ct scan and colonoscopy and even during laparoscopy when looking for endometriosis at 17.

We have had no suggestion of anything like humira. They are sure it's motility, but you're right. None of it makes any sense :ybatty:
 
Hi Niks
just popping in to check on you guys. sorry to hear she still is nnot doing well. I am not surprised about the heart burn.with all the vomiting the stomach acid can cause ulcerations in the esophagus. she should be on a medicine such as Zantac or Prilosec . (unsure of UK equivalents) also immediately after vomiting she should suck on an antacid such as Tums to help protect the lining of the esophagus.
 
Last edited:
Thanks, didn't know about possible ulcerations! Sure I can buy her things over counter x
 
Niks,
Sorry about my previous post. I didn't realize so many words were changed by my phone so I just edited it. Stinky phones!
 
Hi Nik. I hope all goes well for her going to her friend's funeral. That is sad for her and her friends.
 
So sorry to hear about her friend.
I was hoping she was better.
I know the a mobility issue was brought up for Grace. Her GI wanted testing BUT she went down hill in a different direction. She still needs help to poo every day. I guess I need to be wondering about that a bit more.
 
She coped well away, but was having to use lots of pain relief. She is going to do colon prep tomorrow as small BM Wednesday after colon prep (hard!?) but nothing since, over 3 weeks, she's looking really bloated.

I will get her to go to dentist, I don't know anything about fluoride, but she does need to see dentist with all this vomiting!

FW hope Grace is doing okay! xx
 
Thanks for the update Niks. I am glad she made it to the funeral and back ok. I know it must have been rough. I was wondering if the doctors have recommended anything that might keep her bowels looser and help with the constipation issue so she wouldn't have to resort to the prep so often? I was thinking like pysllium husks or prune juice? Something to help keep things moving and prevent the backup. It seems they are treating the result of the back up and not the cause of it.
 

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