CT scan - some thickening of proximal duodenum?

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Niks, I'm just catching up and just can't believe the obstacles you and Jamie continue to face!!! Unbelievable!!!

I just want to touch back on something mentioned a couple pages back - allergies. When my kids were young, anytime I tried to give them ANY liquid medication, they would vomit instantly!! It didn't matter what brand, type of med - ibuprofen/acetaminophen/etc., liquid antibiotic, flavour, how I gave it - fast/slow, spoon, etc. And, as you described, it wasn't sitting in their stomach because it was instantaneous. Also, could not have been psychological because it started from their first dose of meds, when they were 2 months old, when I was told to give them tylenol with their first round of vaccines. We didn't do allergy tests at the time but ped said he thought they were allergic to some ingredient such as a sweetener or something. The allergy to some common 'liquid only' ingredient makes sense because they had no problems with aspirin suppositories nor the pill versions when they were a bit older???

While allergies are not likely to be the sole reason for her problems, they may be adding to them and creating confusion re her symptoms as well. I'm not sure if it works this way but, I'm thinking, if she's allergic to A, B, C and is constantly vomiting because of allergies, even if she then has D (to which she has no allergy), she may still vomit because everything (stomach, esophagus, etc.) is inflamed/irritated from the vomiting caused by A, B, C????

IDK if there's any value in what I'm suggesting but the way you described her instant vomiting is just like what happened with my kids.

Also, re the GI's comment that she looks well! :ymad: Please keep a picture of Jamie taken before she was sick and a recent picture - have them tell you she looks well after looking at the pictures! :ymad:

:ghug: :ghug:
 
LMV - it does seem like a complete waste of a really expensive test! She hasn't heard when her new test is going to be.

Pops - yes she has tried omeraprazole. It really didn't make much difference.

Tess - alergies could be a problem? I just don't know where to go with this! I am really hoping for pillcam quickly so that they can at least see what is going on in small bowel.

Her GP called and asked to see her yesterday. He has spoken to Oxford and they have prescribed ondansetron orodisp for vomiting. GP said that they can only be prescribed by the hospital and are normally used by chemotherapy patients. She's not allowed to use them every day, but they do work!!!
 
My son was taking Zofran (Ondansetron) when he was having his vomiting spells. Unfortunately for him, they didn't work well because he had a stricture and the food had no where to go but up, so maybe if the med IS working for Jamie it could mean strictures are not her problem. I know that sounds kind of backwards, but it's at least maybe ruling out something....? Just grasping at straws here.

And I agree with Tess, find a old photo of a healthy, happy Jamie and bring that to the next appt. I'm guessing the difference will be jaw dropping.
 
Ds has standing orders for zofran as well.
we give as needed for his nausea and if we catch it in time it stops the vomiting.
if not at least it stops the vomiting from being repeated.
 
She has always had normal ondansetron, which doesn't work. She took the new one again yesterday and it didn't work :-/. She's vomiting a lot of blood at the moment. GI is aware and thinks it's a stomach tear again.

Really hoping pillcam gets sorted soon!!!
 
Thanks Kim.

We have had another horrible week. Getting kidney pain again and peeing pink. After back and forward to the doctor she ended up in Surgical Assessment on Tuesday until 2.00am, finally was allowed home but had to return yesterday morning.

After ultrasound scan they decided that the stones are not obstructing her kidneys, and wanted to admit for pain relief and antisickness (vomiting worse than normal, even for her). She decided to go home on the promise she would go back if anything got worse.

So here we are again, crazy pain, not holding anything down, due to what ever is going on with her bowels and now kidney stones again. She has not passed them yet!

Does anyone know what is the normal or longest time it takes to pass kidney stones?

Still no new date for pillcam!
 
Niks, she MUST get admitted. There is no way around this. It is truly an "out of sight, out of mind" situation, and every time she goes home she is no longer on the top of anyone's list to deal with. She is terribly ill and the only way to QUICKLY get the workup she needs is to have her inpatient.

I am a nurse and the mom of two kids with Crohn's and I can't say this strongly enough. Maybe you can show her this? (I'm sure I'm not the only person who will feel this way).

Since she is over legal age, I know you don't have as much sway as those of us with younger kids, but ENOUGH of this! The best chance of figuring out what is wrong and how to get it right is her getting admitted.

Sending support your way. May this nightmare soon be over, and with your "baby" on the road to good health.
 
Sudsy - I absolutely agree!! However her doctors don't. They do everything in their power to keep her out of hospital. Which to be fair is what Jaime wants. She is now under the Urology team which is a start, but the Gastro team in Oxford feel they have exhausted most tests. (Still waiting for pillcam). I really don't think they know what to do with her :ybatty::ybatty::ybatty:
 
Holly, she is never going to do that. She has absolutely no faith at all in hospitals. She really doesn't think that anyone is going to work out what is wrong with her.

She has GI appointment on 5th November, pretty sure nothing will change. She hasn't even had her pillcam test! She has a Urology appointment within 2 weeks also.

She also has a psych appointment on 2nd. Although he spoke to her on the phone and is pretty sure that he can't help! :ybatty:
 
Niks, I just wanted to send you some support. :ghug: I imagine that you are just about exhausted from having to deal with these issues for so long. I hope that you have got some local support, that you are making sure to take good care of yourself and that you are doing some things for yourself to relieve the stress.

All of us keep trying to make suggestions as to how to help because we just cannot believe that you and your daughter have to live like this, but I am sure that sometimes it seems like we are trying to tell you what to do and that we are saying that you are not doing enough to help your daughter.

Please know that you are obviously a very caring mother who is trying to support her adult daughter without taking away her independence. That is not an easy job; however from what I read, you are doing it beautifully. Your daughter is very fortunate to have your support.

May the universe soon show a clear path to you and your daughter for the next steps in her journey to health.
 
... and poor Jaime has been admitted several times and they end up with nothing much ... right? HUGS!!! Do they think Jaime is dehydrated and that is contributing to kidney stones? I am just wondering if some IV fluids has been discussed to help with symptoms when her dysmotility is bad.
 
Hopefully the Urology can provide answers to her issues. Maybe it worth asking them to try and look into daughter case with a new set of eyes. Not necessary having tests redone but for them to form their own opinion on them.

Hopefully you get what trying to say. We make the mistake of not requesting our new gp get copies testing (ultrasound) done by our previous GP. This delayed Sarah dx by between 4-6 months.
 
Thank you everyone!

Yes Jeanne. Dehydration is certainly not helping towards the stones. The Doctor she saw earlier in the week said it is really unusual to have two episodes of stones in 3 weeks. But she thinks with her persistant vomiting and dehydration this will not help. She didn't think it was the cause but certainly was making things worse. Her new Ondansetron Orodisp was meant to help with this.

Yesterday she was only vomiting after food but today, like Tuesday and Wednesday she is just vomiting so much it is crazy even for her. I guess it is hard to know whether it is from bowel or kidney now! :eek2: Yesterday only pee'd once. She did go this morning, getting her to seive it to catch any stones as requested and was bright pink with lots of small blood clots.

Urrrrggghh, poor bugger, enough now!
 
Around 6pm Jaime got a call from the hospital and she has a nurology appointment on Tuesday! She won't go back in Kim, at the moment she is managing to keep some fluids down. Hopefully she'll hang on until Tuesday!
 
Poor Jamie. I hope there is an end to this nightmare right around the corner. Neurologists tend to be pretty thorough, but I don't know what they're looking for in her case. Is her renal function okay? 2 week follow-up with kidney stones and acute vomiting. It's a nightmare!
 
It's urologist Carol! My phone must have done some funny spell check!!! Keeping an eye on her though, her eyes do have a yellowy tinge!! :-/ urgh!

Hopefully will look better today xx
 
2013-05-31 10:18
Bilateral multiple renal cysts refer to a condition,in which more than one cysts grow in both of kidneys.In general,they are benign and cause no symptoms.However,as the the cysts enlarge,the patients may experience back and flank pain as well as nausea.
As the cysts enlarge,they will compress the adjacent kidney tissues,thus resulting in kidney pain.As kidney is located in the back area,the patients can feel painful in kidney area.Additionally,as the cysts enlarge,they can stretch the renal capsule,thus resulting in kidney pain.These are two major attributable causes of back and flank pain in bilateral multiple renal cysts. Another possible cause of the pain may be kidney or cyst infection.The infection also commonly causes blood in urine.
Nausea is a big problem for people with bilateral multiple renal cysts. As the cysts enlarge, they may squeeze gastrointestinal tract, affecting the digestion and absorption.This condition mainly occurs in the early stage of renal cysts. As the disease progresses, the kidney function will decrease.One of important role of kidneys is to filter blood and eliminate wastes from body. If the kidneys fail to perform the function, it can lead to high level of uremic toxins in body. These toxins can irritate the gastrointestinal tract, leading to nausea.
As there is a variety of possible causes of back and flank pain and nausea in bilateral multiple renal cysts. If you are experiencing these conditions, you should firstly find the specific causes.
As the persistently enlarging of the cysts is the underlying cause of back and flan pain and nausea in bilateral multiple renal cysts.Therefore,to control these problems completely, the primary goal of treatment is to shrink the large cysts and stop the cysts from enlarging. If these treatment goals can be obtained, the associated symptoms will be controlled fundamentally.
Click to expand...



From:
http://www.kidneyabc.com/kidney-cyst-symptoms/1700.html



Has she had an ultrasound of her kidneys ?

Maybe something to ask for
 
She wants to wait until tomorrow, and see what Urologist thinks! She only urinated a tiny amount yesterday, but did go this morning. Still very bloody. Lots of small blood clots too. No stones!

MLP - thank you for info! She has had an ultrasound scan, which showed stones were not obstructing kidneys, but I wasn't with her so now sure what she actually saw. I don't think cysts were seen at all though. Hopefully will find out more tomorrow!
 
Urologist not at all happy with the amount of blood in urine and has scheduled her for an urgent Cystocopy. She is not impressed because has to have a GA. I am not sure why she would need a GA for a procedure like this?

They kept referring to 'operation'. It isn't really is it, it is just a procedure, so confused with her having to go under anaesthetic.

Anyway, she has already had her pre op, so as soon as appointment comes through she is good to go! As it is urgent she should get her appointment 'very soon'. They could not clarify exactly what this means!
 
Nik,
I don't know why she would need GA for a cystoscopy unless they think they might need to do some kind of treatment as well? They are not fun though so maybe it is not so bad that she won't feel it. It will be painful to pee after for at least 24hours make sure they give her something to help with that.
 
If it was me i would definitly go for GA If you think about what they are doing and where the camera is going let her have it painfree poor lass had had enough to cope with, I say hurrah for Uroligist first consultant to take her seriously maybe you are getting somewhere at last just need Top Dog Gastro to do the same anynews on pill cam.
 
Pops - still no news on pillcam!

I guess I didn't really think about it but yes it would be painful! It probably is better for her to go under GA.
 
Agree with what both have said. Due to the pain, and in case they want to do something while they are there.

Both my operations have been "we will have a look and if we see anything" and both times they have. Admittedly they were peri-anal but they probably have similar thoughts.
 
Niks
she should be seen faster then a few Weeks. that would be crazy if they let her stay like this. if you don't have a date for as soon as possible by tomorrow I would encourage you to call their superiors and tell them they need to get her in asap.is she urinating anymore today?
 
I had a cystoscopy with only a numbing gel,did not feel a thing and was able to see results first hand It was a tumor causing the bleeding.
Three months later cystoscopic surgery to remove the tumour under
general anesthetic and with intravenous antibiotic cover.
Never felt anything from the surgery and made uneventful recovery, only minor bleeding for a day and no discomfort at all.It was same day surgery and you can't leave recovery until you pee.Quite an experience.
The one negative was an allergic reaction to the IV pain meds.
Never needed the Tylenol3. Never looked back.
The tumour was non malignant.
Hope they find the cause for Jamie----it is a nightmare without end seemingly for you both.
Feel better soon.
Hugs and best wishes
Trysha
 
Glad they are doing something. Definitely better having a GA - it is not a pleasant procedure, so best to be asleep! Hope you get a date soon.
 
Thinking of you Niks and hoping more than anything that Jaime's appointments happen very, very soon! Bless her and you too! :ghug:

Usually a urologist will decide on a local or general anaesthetic based on symptoms. Perhaps the fact that they feel her symptoms warrant an urgent booking is the reason for the GA?

Sending loads and loads and loads of luck your way! :goodluck:

Dusty. xxx
 
Can't believe that you are waiting.... Have they checked her kidney function lately (blood test BUN/CR)? I keep seeing that she's only peeing a little which suggests dehydration or kidney impairment depending how little "a little is".

[[[HUGS]]]
 
Thank you all!

Not sure if they've done bloods to check kidney function! They certainly didn't at her appointment, but when she was in and they did scans, they did bloods then.

xmdmom - She literally only peeing little drops, but after visiting GP she was told that it was down to dehydration. So now taking Ondansetron Orodisp regularly, they don't work completely, but she does hold food and drink down much longer.

She said today she had no blood in urine! That's the first time in weeks, so have everything crossed that what ever it was is settling down.
 
Niks,
You've been at this for a year (maybe more). What piece of the puzzle do you think the doctors think is still "missing?" Have they ever said "it almost looks like it could be _____, except _______ (symptom) isn't present? It is so frustrating that everyone here, and even the average person on the street, can tell what Jamie is going through is not normal and that she needs medical attention. It is frustrating, infuriating that you have not been able to connect with a doctor who is willing to do extra digging to get to the bottom of the problem.

My heart continues to go out to you both!!!
Cheryl
 
I don't think your medical system knows what "urgent" is supposed to mean. To me, urgent means admit her now and get it done. Do you have a date yet for cystoscopy? I'm glad blood has stopped. How much weight has your daughter lost in the past year? Do you have any pictures to post from a year ago vs now?
 
Niks,
If I was you I would get in touch with consultants secretary if you have not got appointment through today,also whats happened about pill cam appt that was weeks ago ring them up because they canceled the last one they may have put it back to routine appt time and you will be waiting ages, appointment clerks are the worst. i think urology problems could well be brought on by her gut problems so need answers about that.
Katie
 
She has had a horrible time! Poor thing :(

Yesterday she was in so much pain at work they called me and told me that she'd had 3 seizures and were with paramedics who were taking her to A&E.

She did not have seizures but was in so much pain that was shaking from head to foot. Her pulse rate was 190 :eek2: I got from work (30 mins drive) to the hospital before the ambulance! She was a state. Sucking on entonox like crazy. She had their attention and was seen immediately given high doses of pain relief and wanted to do a CT scan. As she has already had 2 within a year, not massively impressed with this and the consultant agreed. They know that the problem is a stone which she is having trouble passing. She had fluids and managed to pee, which seemed to move it a little and her pain eased massively.

No blood in urine. In fact it was so clear it looked like tap water!

I have no contact number or name for urology to call them to hurry up procedure! It is so frustrating, unfortunately the appointment was made over the phone and she has not yet had a letter from them. Urrrgghh. The doctor she saw yesterday was lovely, but had no way of finding which team were treating her.

She does have appointment in Oxford this afternoon. I will be pushing massively for him to hurry up on the pillcam procedure.

Carol - Her weight in August had gone back up to 57kg she now weighs 50kg.
 
GI has promised she will have pillcam within 2 weeks! Although he will be 'very surprised if it is not normal'! Urrgghh, after sitting with him for an hour, I really do feel like we have just gone round and round in circles. He feels that Jaime's symtoms are IBS and severe constipation.

He did suggest that there was an IBS specialist in London and ummm'd and arrrr'd about whether that would be a good idea. Would an IBS specialist be a good idea? I really don't know!

Just as we were leaving(literally just going out of the door) and my head was like mush and after an hour of him not explaining why Jaime is no better. (It could be a cycle thing) - literally that is the best he could come up with. He said her bone density scan results came back with abnormal with -2.9 on spine score. To be perfectly honest I did not really ask what this meant or why it would be like this as I was reeling from the pointless appointment!
 
oh niks I so feel for you I had this but to a much lesser degree last year with louis diagnosis but finaly I pushed and got a scope and both consultants said well done for pushing as they were suprised at diagnosis, i was not!!
Good news pill cam soon and hopfully cystocopy your poor girl needs some answers as do you, just dont give up.

Katie
 
I think following up with an IBS specialist is worth pursuing (along with your current plans). I am not sure what they will do exactly - but nothing seems to be helping so far.
 
I agree seeing the IBD specialist is a good idea alongside the urology investigations. The docs you have seen obviously have no idea what's going on, a specialist sounds like the way to go. You just need to get to someone that can actually help!
 
niks yesterday my sister crohns for 20yrs had the results of an endoscopy back she has been having months and months of symptoms like obstruction when she eats it sits in stomach only to be vomited back few hrs later abodominal pain numerious gastric bleeds, bloating amazing gut rumbling, we both asumed it was her crohns but endo showed Nodular Duodenalitis.

I had to google it sugest you do too, hers has caused her phyloric sphyinter "the valve that controls the stomach empting" to be so ulcerated and inflamed its delaying the food passing though to rest of gut, her duodenum was just as inflamed and that is were she is bleeding from, bizarly no signs of crohns. exabated by stress and can be caused by an bug and simply treated by antibiotics. have a read and see what you think it could be an answer, pill cam will show it up as duodenum looks nodular and swollon " some thickening in proximal duodenum" katie
 
Niks just catching up on this , oh my ur poor girl , fingers crossed she gets betta asap and she gets pill cam soon . Flipping nhs don't seam to want to diagnose anything except ibs ! I even have a writtn letter to my gp that actually says that they want to leave me alone now until crohns 'shows itself clearly ' ! Flipping silly ur poor girl is so much more poorley then me . Wen are they going to realise it quality of life she's just a young girl god bless her x
 
Niks,
Hi sorry I was off for a few days. I wanted to agree it can't hurt to see the ibs specialist sometimes another set of eyes may help bring so e new ideas.
 
Think you're all right. She is going to see GP to get him to talk to Oxford to get this hurried up.

Any one got any ideas about the bone density scan? He said she didn't have osteoporisis, but did have osteopenia. This can lead it osteoporosis and from what I can see probably needs monitoring and calcium supplements?
 
Niks,
She needs calcium and vitamin D supplement. I would look for a liquid supplement as it is better absorbed and easier to tolerate. She also needs to try to increase her weight bearing exercise as much as she can tolerate it. This is very important to take care of and monitor. She is currently in the phase of her life where she is building up her bones. At age 30 you lose the opportunity to build and simply maintain.
 
And the osteopenia gives further evidence that she has some kind of problem with absorption of nutrients, otherwise it would not be developing at her age. Therefore IBS is an unlikely explanation for her symptoms.

Did she have any liver function studies done when she started turning yellow?

I wonder if drawing up a page with all of her symptoms and positive test findings on one side of the page with the headings of IBS, IBD and Other in columns on the other side of the page would help you to be able to go through everything with the IBS specialist easily and to get your questions answered. That way the doc won't be overwhelmed with all of the info and you can keep track of what is significant. As you go through the symptoms you put a check mark in each column and by the end you might have a map of what to do next.

Good luck. i hope the appointment happens soon.
 
Thanks Happy.

I shall have everything down in date order to take to any new Doc. Her bloods generally come back. Just ferritin and b12 on low side. Potassium has been out before but liver as far as I'm aware is ok. Her yellow tinge only lasted a couple of days..
 
hi niks

what does her ESR and CrP look like they are the specific infamatory markers which give an indication how much inflamation is going on in body they are not organ specific only test to show inflmation in gut is Faecal Calprotectin amazed if gastro con not asked for it.
these tests were the only thing apart from me ranting that made drs keep looking with Louis.
 
Hi Niks,

I'm so sorry your having to go through this, your poor daughter. It took me 8 years to get diagnosed and many battles with doctors/changing hospitals to get there.

I felt I needed to respond to the latest update of yours on her -2.9 T score this is I'm sorry to say osteoporosis not osteopenia. Anything below -2.5 is classed as osteoporosis. The same happened to me, all the years of not being taking seriously, whilst not being able to eat half the time and then the obvious malabsorpbtion cost me my bones!!

She needs to be referred to a rheumatologist for this, to decide if she needs treatment or not. I'm not on any treatment at the moment, I'm 31 and trying to do as much weight bearing exercises as I can. I have my next dexa scan next year and will re-evaluate then.

I know its stating the obvious but even if she was able to do weight bearing exercises, it not going to do much all the time the underlying problem is not being sorted. Because my bones where so bad for my age, the rheumatologist thought I had coeliac as well as crohn's. I think I remember reading they suspected that at first with your daughter too.

I know others have said it but I would get your GP to refer her to St Marks, this is not ibs and it makes me soo mad when they say that ,when its screamingly obvious it isn't. Sometimes you need to go to the top specialists to get answers. :ghug:
 
Yellowing??? I would be concerned with liver function as well. Possibly a gallstone blocking a bile duct. Not something to mess with at all! I wouldn't wait until her liver numbers are down. I would request an MRE rather than a CT scan. It will show any liver issues as well.

Rowans recent diagnosis of PSC which is a very devistating diagnosis, her liver numbers are completely normal.
 
Pops, her CRP is always normal! Her GI has never asked for FC, but we did one privately and was also normal! So I guess no inflammation.

B Baker - thank you for info. He said it wasn't osteoporosis because it is only her spine levels that have come back abnormal. I think there were two other numbers that were in the normal range? Does that make sense to anyone? I am confused by it all as it was thrown at us as we were leaving and nothing really was said about what to do, or who to see about it!

Mary - Rowan's diagnosis is devastating :(. Pretty much all of Jaime's bloods are normal. She is in Swindon at the moment after another really horrific day of absolute agony. Swindon I know will not do an MRI!! So frustrating.

The problem is once the pain has eased she gets so fed up of being there and wants to go home. This is the third time in four days where she has been completely unable to cope with the pain and has been taken to A&E. Twice by ambulance. In 2 hours of pure hell she passed out cold 7 times. It was almost a relief!

I left her after having a second x ray. But so far nothing is making any sense. The surgeons are not really getting that her bowel pain is always there. Her back and groins pain is new and what is really causing the problems at the moment. It starts upper right back and shoots down to her groin,

Her urine was clear today! They don't even think she has stones!! What on earth could be causing this horrific pain??
 
Niks,
I am so sorry she is having so much pain. Maybe it really is time to look into a referral to St. marks. It seems like this is simply beyond the scope of these other doctors experience.
 
Niks, you do need to get her to stay in if that what the drs want, nothing gets the drs back up is an paitient who self discharges, its classed as a big no no and l have seen patients labeled as time waisters , Louis CRP has always been normal but his ESR was raised, drs like to work to facts so the crp being normal has proberly put her in the not IBD bracket, which is silly as our gastro nurse says they have several patients with normal bloods and still active desease. they cant let her stay in this pain hope fully if she stays in they can speed the tests up you can jump waiting lists as an in patient so they may be able to get cystocopy done.
Katie
 
Kim - I think you're right!!!

Katie - it is more likely to be the other way. She knows that what ever it is is likely to come back and she can't cope at home with this pain. But hospital seem like they want to discharge her today!! I"m at work so can only go on what she is saying.

They are monitoring urine output and after 3 bags of fluids and drinking too only a little urine so far. She said she had 'whit bits' floating in it today , which she hadn't noticed before. Oh just so exhausted with continuously fighting the hospital!!!
 
Oh Niks this is so bad makes me really cross as an exnurse that this is going on what are they playing at, how can they think of discharging her if she is not passing much urine and no answer to cause of pain she needs MRI have they given you any idea as to cause, just keep taking her back in poor love to faint from pain is shocking. I agree with Kim but that referal will yet again take time she needs answers now, I feel like screaming too you poor thing appart from being frustrating it must be scary too. Keep fighting Hun thats all you can do.
Katie
 
She's home! She saw a Gastro Doctor and not Urology! Think things are getting very confused. He thinks if she has any bowel dysmotility or slow bowels it is likely that her kidneys are slow too. He said the muscles are very similar.

He was very sympathetic and this that she needs to be referred to a pain management team. This has been suggested so many times before!
He sent her home with Diclofenac 100mg suppositories. Yesterday after peeing and having one of these the pain did ease. My guess is it was probably peeing that did it, but I guess it is something else she can try when things get really bad!

She is going to GP on Monday with a list of things!

Bone Density - not sure if he has even had those scores, and what should she do, if anything.

Referral to Pain Management Team.

Referral to St Marks/Oxford suggested Doctor in London.

Possibly increasing Butrans patch size, Dr today thinks she should.

Now to get through the weekend with no more hospital dashes... Have EVERYTHING crossed.
 
MLP - Tell me about it. It feels like we are just bashing our heads on brick walls and for poor Jaime just more and more things seem to be going wrong :ybatty:
 
Sorry your nightmare is still continuing and people seem to still want to only treat her symptoms and not get to the actual problem.

My spine was -1.3 and my hips were -2.5 in other words hips osteoporosis, spine just in the osteopenia bracket and I think my neck was -1.3 too. Anything under -1 to -2.5 =osteopenia, anything under -2.5 osteoporosis & above -1 is normal. I'm not a doctor but in these circumstances and him being a 'gastro' doctor not a rheumatologist, I would push to see one. The more 'specialists' involved in your daughters care the better.

Also I forgot to mention my esr and crp always came back normal too, I know this is a big reason it took so long for me.

I really hope this nightmare doesn't continue for much longer :ghug:
 
Median arcuate ligament syndrome (MAL) or celiac axis compression syndrome (CACS) is a rare etiology of chronic abdominal pain. Traditional treatment of this syndrome is surgery. We report a case of median arcuate ligament syndrome with a severe compression of the celiac trunk, which was successfully treated by angioplasty with stenting.
Click to expand...


From:
http://www.hindawi.com/crim/vascular.medicine/2012/129870/


Please ask about a Doppler ultrasound of the major blood vessels in the abdomen .
 
Blimey MLP - have never heard of this, but certainly worth asking about! Thank you xx

She has had a call today to tell her Potassium Levels are low. This has happened before but when she was in hospital. I don't know the levels, she didn't ask, but they want to re - do bloods next week.

Is there anything that would help with this? She now has calcium supplements.
 
Did they check her magnesium too? Low mag can cause low potassium. You can take magnesium and potassium supplements. Potassium supplementation needs to be monitored closely as you do not want to go high.
 
Thank you ladies.

Nothing was said about Magnesium. She still isn't keeping much down, so guessing that could be the problem, but bananas are a good shout.

Will get her re-tested next week. Hopefully will pick up.
 
A handful of Epsom Salts in a hot water bath helps keep up magnesium levels and is relaxing too.
Potato is also a potassium rich veg.
Feel better soon
Hugs
Trysha
 
Hi Niks,

Just been thinking of you and your daughter and wanted to see how things were going. I am hoping that no news is good news and she is finally on the road to recovery.

Hang in there!
 
pops14 said:
Louis CRP has always been normal but his ESR was raised, drs like to work to facts so the crp being normal has proberly put her in the not IBD bracket, which is silly as our gastro nurse says they have several patients with normal bloods and still active desease. Katie
Click to expand...

Same with Gus' docs...his labs are not useful in evaluating his disease. They rarely show the true nature/severity of the status of his current condition. By the time the ESR is raised enough, he is already too far gone for a simple/mild remedy.

I hope you can encourage her to stay in long enough for the docs and nurses to see first hand what she is dealing with...vomit, pain, etc... It might even take a week or two of "on site monitoring," but it will be well worth it.

I can't tell you the number of times I told Gus' GI doc that he was "curled-up in pain." It wasn't until the doc happened to walk into his hospital room and saw him in that position, that he finally/truly understood what we were dealing with.

Short of her being willing to stay in the hospital, can someone stay with her and video her "day"? I know she will resist, but at this point...it's going to take something drastic to get some action.

Best wishes for you both!
Cheryl VT
 
Aw thank you ladies I am feeling loved!!

She has been feeling better in herself and been keeping some small meals down! Luckily no more of the really bad kidney stone pain.

She has urology tomorrow, which she only found out about Saturday. Not sure why as her op is 4 th December.

Her psych appoint was ok. He basically discharged her and wrote report saying there was no psychological reason for her vomiting !

Still no news on pillcam!

So mostly much more positive but she is really upset because her work have cut her hours to 16 a week! Really not happy and she's seeking legal advice. Their reasoning is because of health and for her own good. The crazy thing is, that even though she's had a rough time she has still managed more hours than everyone else and is rated their top agent! Hopefully she can get this sorted.

I do understand where they're coming from, last week alone they called an ambulance twice and she was passing out loads. I think Jaime has learned that she needs to know when to call in sick or just go home before it all gets that bad.
 
I'm glad to hear the kidney pain is settling down.

I know she has to be stressing about the job situation, my Non-IBD daughter freaks out when either of her two jobs cut her on hours for any reason. She still managing about 40 a week but kids and their money.

I'm glad the psych agreed that this wasn't something psychological and wrote something saying so.

I hope you guys hear from the pill cam soon and Jamie can find full relief!
 
I have news!
Just had a call from Oxford. Jaime is having pillcam by endoscopy TOMORROW! :eek2:

I actually can't believe it!!! We need to be there at 8.00am.
 
Thank goodness!!!!!! I hope this is the thing that FINALLY gets this whole rotten thing on the path to resolution and good health for your daughter.
 
Wow, good luck for that! Will check in after we get back from Andrew's operation on Thursday. Glad she is a little better.
 
xmdmom said:
Hope it goes well and provides useful information.
Did they prescribe a clean out prior to the pill cam?
Click to expand...

xmdmom - I asked about this when she called me this morning. She advised against it as she says she doesn't want the camera to whiz through. I did explain the whole slow transit and constipation issues, she still advised against it!

Jaime has felt sick today but hasn't been sick and has had BM's. So just hope that it does go through!

Urology appointment was pretty good. He did a cystoscopy while we were there, only took a few minutes! I have no idea why the original doctor wanted to do it under GA, was uncomfortable but for a couple of minutes really not worth a GA! We were not expecting that, but now no need for appointment on 4th!

He said she was clear of stones. Thank goodness. He did bloods to see if she was likely to get these again. He also wanted a 24 hour urine collection.
 

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