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CT scan - some thickening of proximal duodenum?

He thinks to continue with meds. She has a sinus infection! Hopefully will clear up quickly
 
Just relieved that it is just a normal infection, that will hopefully clear up soon. Hope the meds start to work soon too !!
 
Hey! Thanks for checking in on us!

She's had a sinus infection and now tonsillitis! Poor thing. However her bowels have been moving! She did have mucous and blood this evening though, that's the first time since about February..

Hmmm, if it's not one thing hey! I guess it is good that things are moving through. Her vomiting is better and reduced to 4-6 times daily. Much better than 12 plus times. So a mixed bag really :ybatty:
 
Hi Niks,
I took neurontin and had those same side effects. Supposedly they go away but I could not function so stopped taking it. It did nothing for my pain anyway. :(
 
Kim, she feels like she's hallucinating! It's really not great. I don't think it's doing anything for her either, but she has been asked to keep going for a few weeks!

We'll see. On a positive note, she has managed BM's pretty much daily! Some bloody, but at least not completely blocked up now.

She has vomited some blood today. I guess like last time she probably has a tear in her stomach from vomiting. Funny how now it is just 'one of those things'. We used to be horrified!
 

723crossroads

Banned
Location
USA
I felt that way too on neurontin. Like I was outside myself when I went to the store and the lights had a halo around them with rainbows! Weirdest experience!!!:yrolleyes:
 
J went to see GP this morning. He feels that if there is any benefit at all from Gabopentin, it is only slight. She doesn't think it's helping with pain. He thinks side effects are just too much and have only worsened in last week, even with sinus infection easing. She is going to wean off from today.

GP told her to.leave a message at Oxford, not sure that they'll have another plan, but relieved that she's stopping this!
 

723crossroads

Banned
Location
USA
Amen to that! I D K how anyone can take it! Hope they find something else. But be careful, other drugs do the same thing that are similar.
 
Stopping it sounds like a really good idea. I know there is a lot of negativity about pain CBT but I think it might be an option worth considering for Jaime.

My pain management clinic said CBT works best for type A personality people, who've explored the other pain management options and found that the relief they bring just isn't worth the side effects.

Initially the trade of with CBT is increased general well being & function (from removing painkiller side effects) & sense of achievement (from the planned living component) against higher levels of pain. Which is a trade off thats much easier to handle for people who get really adverse effects from pain killers and are at that point where they just want to get on with living.
 
Cognitive Behavioural Therapy, its the pscyhological approach to learning todeal with chronic severe (or extreme) pain. Normally taught by multidisciplinary teams in pain management centers.

I had CBT for my Atypical Neuralgia at the end of two years on a cocktail of pain killers and for me personally it was just brilliant, it didn't take the pain away (not in the short term anyway) but it gave me my life back, as it gave me the skills to cope with my pain levels, so I could cope without all the drugs and there debilitating side effects.
 
Thanks Maree, definitely worth looking in to!!

Jaime really relieved she's dropping tablets. She hates meds. She in her words 'had a normalish poo and only vomited 3 times today!!! Whooop whoop!! Lol. Pretty exciting stuff!

On a very exciting note we are going to see RIHANNA on Monday!!! We can't wait!! Fingers and everything else crossed that she feels ok on Monday! Xx
 
I have done CBT and it helped me for a long time. Though recently the pain from my nerve disorder has gotten so bad it is not really working anymore :( I recommend trying it although with Jaime's level of pain at this point I don't know if it would help. I think it is ridiculous that they don't keep trying to find a cause of the pain. They need to keep searching and find an answer!
 
GRRRRR! Oxford just called J saying they didn't prescribe Gabopentin! They said it was GP and she should never have been on it! Makes me so cross that they clearly don't have accurate records of her last appointment or even what they prescribed!!!
 

DustyKat

Super Moderator
Oh man Niks! Your poor girl. :yfaint:

I hope she starts to feel better now that she is getting off the Gabopentin...but what the hell is the deal with Oxford! :quack:

Sending loads and loads of luck and healing thoughts that Monday is a goer! Woohoo!

Dusty. xxx
 
Niks, I know the last thing you want to do is move care again but just a thought how far would Southampton be for you?

DS is under pead GI team and I can't fault them. From the day he was admitted to ALL out-patient appts we have always seen the same consultant. Also, if I've been concerned on a Fri, he has seen us on a Monday. He has said that if we are happy to make the journey (1h and 45 mins) each way for us he will see us.

The lack of care and support your have been receiving highlights all the wrong things with the NHS!

Thoughts are with you.

Xxxx
 
Ands - I really don't know anymore! Southhampton is only an hour and a half away. Her next appointment is 2nd July, we'll see how that goes, but I think you're right, it is much harder when she sees a different doctor every time!

Dusty thanks ! We can't wait :D. Fingers crossed xx

Anyway the last couple of days Jaime has had diarrhea!! I can't believe it. She has cut out all laxatives except Magnesium Hydroxide. Only one or two each day, but mucousy with some blood. Sickness better, around four times a day. Pain constant, but severity changes. She is preferring diarrhea to the severe constipation, but I just can't believe how she has gone from one extreme to the other! :ybatty:
 
Yes I would say that Grace would prefer the diarrhea to constipation.
Now that her bowels are moving a bit, hopefully her GI track will start to heal up and she'll start feeling better. Of course you know that answers still have to be fought for.
Is she still working?
 
FW, yes she's still working, is easier now not vomiting so much!

Not holding my breath with new investigations, but she certainly isn't back to normal!
 
Niks,
Didn't she have diarrhea at the beginning of all this? This is what makes me suspect she does not have a motility disorder and an IBD disorder (plus the inflamation seen on early scans) Now I am not a GI doctor this is just my opinion but sounds like these specialists are barking up the wrong tree (American Saying, LOL). Have you called the GI to tell them this new development? I would let them know ASAP.
 

CarolinAlaska

Holding It Together
It's been my feeling all along that they are misdiagnosing her. First it was celiac, then they load her up with oramorph and call it motility disorder... the left hand doesn't know what the right hand is doing. I'm glad she is back to moving her stools. Perhaps now a pill cam might be in her future. Sometimes, however, diarrhea can be from only liquid getting around an obstruction... if there is a lot of pain involved constantly, this could be the case.

Hugs to both of you.
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
GRRRRR! Oxford just called J saying they didn't prescribe Gabopentin! They said it was GP and she should never have been on it! Makes me so cross that they clearly don't have accurate records of her last appointment or even what they prescribed!!!
I think Jaime's docs could use a little CBT! They don't seem to know how to deal with chronic illness either….&*))&^% morons!

I'm glad she's moving Niks albeit maybe a little too fast. It's got to be such a relief for her. Now to stop the nausea and find a happy medium for her!
 
I think Jaime's docs could use a little CBT! They don't seem to know how to deal with chronic illness either….&*))&^% morons!
Haha!! Made me laugh! :rof:

She again has had very loose bowels with some blood! She is finding this much easier to deal with, but it isn't right! Has left a message with Oxford, as not sure what to do regarding medication! I think ditch the lot!
 
Hope your weekend isn't too bad either. It never ceases to amaze me how the docs can leave someone suffering as long as they do. Thinking of you both
 
I can see why ditch the lot is an appealing idea given that oramorph was clouding the picture so much that doctors had lost sight of what the original problem actually was.

What medications is she still taking?
 
Maree, she is only taking Metoclopramide, Buscopan and Magnesium Hydroxide , although at the moment has stopped with the Magnesium because of very loose bowels!

She has also stopped sodium docusate, senna and citramag. Plus all the other things she has recently been on, so I guess just the two isn't so bad!
 

DustyKat

Super Moderator
Thinking of you and your girl Niks and wishing more than anything that you had solid answers and soon! So not fair. :(

Dusty. :hug:
 
Niks,

I've been so busy, tending to Gus' needs through this post surgical period and trying to get back to a "normal" life, that I've missed quite a few updates. Though I want you to know that I kept both you and Jamie in my thoughts and prayers. I wish Jamie were feeling better. The duration of your ordeal has to be taking a toll. You've shown yourself to be a strong woman and mother. I really do hope you both find relief soon!! No family should have to endure this kind of uncertainty.

Hugs to you both!
Cheryl
 

CarolinAlaska

Holding It Together
Hi Niks. I agree that she seems better off, but still she isn't good. At least she isn't vomiting poop. Now it is time for a realistic diagnosis. If Oxford doesn't stand up to the plate and test her some more, it is time to move on. Has she had a fecal calprotectin? What are her inflammatory markers saying (Sed rate, C-reactive protein)? Is she getting anemic? One thing positive about all this, is that you are getting an education about your daughter and her condition and you know a lot of things that don't work! <<Hugs>>
 
Well good news is we had an amazing time at Rihanna! Jaime managed the entire Concert, at the front! :D

Not such good news is I have received a letter from one of the Registrars that saw Jaime at her last appointment. His diagnosis, 1. Coeliac Disease (ok). 2. Severe Constipation 3. Recurrent Vomiting.

Really??? How is this a diagnosis! It is just her symptoms! I am livid and have just e-mailed the secretary. Not only this, he put that he advised her to stop Senna - NO HE DIDN'T! And he prescribed Pregabalin. He prescribed Gabopentin. He hand wrote the prescription! OMG what is the matter with this man! Maybe it's the same drug? :ymad: I am gobsmacked and really don't know what to do.

:confused2:
 
Hi Niks. I agree that she seems better off, but still she isn't good. At least she isn't vomiting poop. Now it is time for a realistic diagnosis. If Oxford doesn't stand up to the plate and test her some more, it is time to move on. Has she had a fecal calprotectin? What are her inflammatory markers saying (Sed rate, C-reactive protein)? Is she getting anemic? One thing positive about all this, is that you are getting an education about your daughter and her condition and you know a lot of things that don't work! <<Hugs>>
Carol, her inflammatory markers are always normal! Have no idea about the others. No anaemia either. I think this is why Doctors are not taking this seriously, her bloods are normally fine. They still haven't done faecal calprotectin! GRRRRRRR
 
Location
,
Niks l think its time to move on and find another DR.
I don't think she'll ever get diagnosed with anything with this DR.

I'm glad yous had a good time at the concert..:thumright:
 
Thanks Maree! It's not the same one though, so not sure why he has put that on her letter!

Jaime has just had a call from Oxford saying they have been trying to get hold of her for 'days' and want to see her on Thursday at 7pm after their clinic!?

Errrr, she has had no missed calls, strange that this is after my e-mail querying all the mistakes on the letter! Anyway, we're going to go, although not sure what they can tell her to her face and not on the phone! Strange !!!
Her next appointment is only a few weeks away, and at the moment she isn't anywhere near as sick as she has been!

:confused2:
 
Maybe they actually found something and want to tell you face to face. Wouldn'tthat be a shocker?:eek:
Haha! They haven't tested for anything else! Not even bloods, she just had an x-ray which showed extensive faecal loading, but all her x-rays to date have!!
 
Hi niks , I don't know if this helps , I paid for a private fecal calprotectin from oxford screening practice u can finbd it on the internet , it was 30 pound. I just wanted to kno ,and its this result that has pushed my docs to start more testing ! Xx
 

CarolinAlaska

Holding It Together
Thanks Maree! It's not the same one though, so not sure why he has put that on her letter!

Jaime has just had a call from Oxford saying they have been trying to get hold of her for 'days' and want to see her on Thursday at 7pm after their clinic!?

Errrr, she has had no missed calls, strange that this is after my e-mail querying all the mistakes on the letter! Anyway, we're going to go, although not sure what they can tell her to her face and not on the phone! Strange !!!
Her next appointment is only a few weeks away, and at the moment she isn't anywhere near as sick as she has been!

:confused2:
Well, at least this is something! Even if she isn't as sick as she has been in the past, she does have bloody diarrhea. She's symptomatic although she has been off of gluten for ages. She doesn't have constipation because she is off of the constipating meds. Try to look at things for what they are, and not what they aren't. Try preparing for her appt on Thursday with some of these things: She is doing a little better, but these are her current symptoms: 1._______2.___________3.__________... These are the symptoms that she started with: 1._________ 2.___________ 3. __________... These are my current questions:... Tests we'd like to have done now that she isn't stopped up:...(ie Fecal calprotectin, pill cam) Has IBD been definitively ruled out? and if so, how...

I hope it all goes well! Let us know!
 
Hi niks , I don't know if this helps , I paid for a private fecal calprotectin from oxford screening practice u can finbd it on the internet , it was 30 pound. I just wanted to kno ,and its this result that has pushed my docs to start more testing ! Xx
Thank you! I will be looking at this right now! :D xx
 
Thanks Carol. I am intrigued! When she was really sick they would not bring her appointment forward. We have not asked for this, but I did say on e-mail to the Secretary what is going on now.

We'll see!

xx
 
Could it be Niks that they want the appointment to address the letter?

I'm glad she's feeling a wee bit better. Make sure to fatten her up if you can.
 
Just a thought...

Maybe you should insist on an allergy panel to rule out reactions to other foods. She has been vomiting so often it is not an exaggeration to say you suspect she could be reacting to other foods.

I've been gluten free for 8 years, and unfortunately I can't have dairy either (casein- the protein, not a lactose reaction). Is it possible that Jaime is reacting to dairy? The protein chains of both gluten and casein are extremely similar.

Also, maybe you should call and have them run a celiac blood panel to get some baseline numbers. How extreme was the damage? It seems like if she's been gluten free this long, things should have been better. Maybe because the diagnosis was challenged, Jaime hasn't been as diligent with following the diet: Salad dressings, make-up, etc. What do you think?

Since you finally will have your time with the doctors, these blood tests and allergy panel results should help guide you towards an answer.

Hugs! Good luck!

Kimberly
 
Also, maybe you should call and have them run a celiac blood panel to get some baseline numbers. How extreme was the damage?
Kimberly, her coeliac bloods have always been NEGATIVE! She was diagnosed back in December with biopsies that came back with 'coeliac tendencies' These were not visible during her procedure, but were found in biopsies. In March, with gluten free diet these were completely clear, and no signs of disease at all. And yet still very sick in March! I also know that if there is extensive damage that it is clearly visible during scopes!

I don't believe that it is coeliac disease that is making her so poorly. She has not however been tested for any other allergies. So you could have a point! I have previously asked, with no one thinking this was a possibility, but surely it's worth some tests to check?

FW you could be right! Maybe covering their own backs too, as there were so many mistakes on the letter they sent us and also the prescribed medication had to be stopped because of such severe side effects. I guess we will only know tomorrow.
 
We are going tomorrow night, but her next actual appointment is 2nd July, so if we can get tests done before that it might be good! Will discuss it tomorrow and let you know what he thinks :ybatty: xx
 

Tesscorm

Moderator
Staff member
I'm going to suggest you write down her symptoms as caroleinalaska suggested (prior, current), your questions and the tests you would like done. Leave space below the questions and tests so you can write the answers and their reasons why 'not' to do any of the tests. Also, give the doctor a copy of the questions so that he clearly knows the history, your concerns and your requests. I don't know about there but, at least with Stephen's Ped GI, I learned that every email I sent or concerns I expressed were included in his file (they were all in the copy of the file when S transferred to adult GI).

It might be a good idea to have a 'paper trail' (as you mentioned your previous email seemed to get the ball rolling)... perhaps email the summary/questions/tests to the doctor tomorrow before the apptmt. But, with a 'nice' note so you're not putting them in a 'defensive' mood before you get there, ie 'These are some of the concerns I would appreciate discussing at today's apptmt, I thought Dr. X might find it helpful to have a copy before we meet'... If you don't think this is a good idea, you could send a 'follow-up' email after the apptmt which would include their answers as well, with a note saying 'this is my understanding of our conversation and your recommendations, please advise if I am incorrect in my understanding'.

With Stephen's ped GI, I had a issue re what they had told me re MRE results, phone calls/questions, etc. went back and forth, nurse was being contradictory, etc. I finally sent an email with very pointed questions, specifically asking if my understanding was correct (because if it was, I wasn't happy!), etc.... they moved up our apptmt and it was the longest apptmt we ever had as the GI went through all my concerns and actually explained all in detail.

You certainly don't want a tense relationship with your doctor :( but, if the alternative is that Jamie isn't getting the necessary care, you might have to do something like this to be sure they're on top of things.

Just a suggestion... certainly don't do anything you're not comfortable with! :eek:

:ghug:
 
Thanks Tess. I think you're right, they do seem to be acting more on what I've e-mailed (twice now since last appointment) I am going to copy off e-mails and write questions. I think it is a good idea to follow up with an e-mail! I did last time, but only because I was so frustrated that they were not listening to what had gone on previously!

Thanks again :D
 
Ok so not long back from appointment. FW you were right, he wanted to address letter.

Basically apologised for mistakes and 'diagnosis' (or not!) He went through everything pretty thoroughly Is NOT up for any more testing right now, but he says if anything changes then he will.

He thinks that there was clearly some inflammation, as previous tests show. However in March there was no evidence of any so he feels that what ever that was that it has gone.

He admitted that it is often hard to diagnose IBDs but they don't like to label people without concrete evidence.

So what is going on now?! He feels that her bowels are just sensitive and can react with either constipation or diahrrea . He explained it for a long time and in depth, but basically this it what it amounts to!

The pain - he thinks that some people react differently to pain and she is more sensitive to pain. I said it was only in one area, and that she has had a broken wrist and didn't complain at all. He just thinks it is one of those things! Advised to try hypnotherapy or acupuncture. (I actually think acupuncture might be worth a shot)

Vomiting - as she is much improved, and he acknowledged that it is not right, but he feels she is coping well and she needs to be aware that psychological issues can affect the way you feel!

He was very 'nice' and appeared to be listening and sympathetic however basically she has to live with it!

Jaime has just had enough and as long as she doesn't get worse wants to leave it. I really hope she just keeps improving, but I would be really surprised if this is the end of it. She does feel better than she has for a long time and I guess she is grateful for that. Have promised her that I will leave it for now, but if she starts to deteriorate in anyway we will have to do something.

I am going to look into getting a private fecal calprotectin test. There would be no harm in this!
 
Location
NY
oh well ... I am glad he seemed nice, but it does sound disappointing. I am so glad Jaime has improved somewhat and can take a break from doctors/testing for a while.
HUGS!!!!
 
Ya, sorry I wish I wasn't right.:confused2:

You both need to recoup. The battle will rage again, so it's best to rest while you can.

We're here for you guys!

HUGS
 
I think she's just had enough and we realised that she hasn't been admitted to hospital, or been taken to Emergency since 12 May! That is a whole month. I really think that this is the longest time since last October.

Let's just hope she keeps improving!

fosterschick - have just found online faecal calprotectin from oxford screening practice, has got to be worth doing this even if for peace of mind. Thanks for this!
 

my little penguin

Moderator
Staff member
Glad she is improving but it makes me :ymad:

When they start to say "sensitive stomach " etc..... without real explanation.
Since when they have no idea it is the "safe" fall back.

DS was told this more than once-- turns out he just wasn't on the right med.
That being said
I think sometimes you do need to take a few steps back to see where you end up since she was on all of the wrong meds for so long.
her system will need a bit to settle
then you will have a better idea where you stand and how to proceed forward.
 

DustyKat

Super Moderator
I so hope all continues to settle for Jaime, bless her. :heart:

Heaven forbid if not, as mlp has stated, the wind down will allow you to start from a clean state again. I know I am stating the obvious here to you here Niks but keep observing and documenting just in case it is needed in the future. :hug:

He admitted that it is often hard to diagnose IBDs but they don't like to label people without concrete evidence.
I do appreciate and respect the sentiments stated here and it goes without saying that i wish more than anything that Jaime is never labeled with IBD but it does remind me of something that I posted a couple of years ago: :lol:

http://www.crohnsforum.com/showthread.php?t=18683

Dusty. xxx
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
How the hell?? I can't find what I posted yesterday...he'll, I can't even remember what I posted yesterday!!

How often is Jaime vomiting now Niks? If it's once a week, it's too much!
 
It just makes me angry when the tests don't reveal anything concrete and the docs (let's give them the benefit of the doubt) imply that the patient (or parents) are merely over-reacting or are overly sensitive and/or it's all in your head!

If Jamie were his daughter, I guarantee you that he would not be so casual about her symptoms.

Glad to hear that she has had a bit of a break...one month and counting. Hope it continues. You both deserve the breather!
 

723crossroads

Banned
Location
USA
How the hell?? I can't find what I posted yesterday...he'll, I can't even remember what I posted yesterday!!

How often is Jaime vomiting now Niks? If it's once a week, it's too much!
Duh, don't you do crossword puzzles Dex?? Haha!!!

Sorry Niks, this is personal, defending my honor against this scoundrel!:devil:
 
Nike,
I am so glad she is finally having a bit of a break but some of the things that doctor said remind me of things Caitlyn's first doctor who we fired said. " oh it is in their head, girls are more sensitive etc." if she starts to get poorly again you have to look for a new doctor as hard as that is. Your poor baby really need some answers. I hope the fecal cal. Can help.
 
How the hell?? I can't find what I posted yesterday...he'll, I can't even remember what I posted yesterday!!

How often is Jaime vomiting now Niks? If it's once a week, it's too much!
Lol I know! Dusty"s memory is incredible! :D .

She is still vomiting everyday usually not more than 4 times, sometimes once or twice! Seems pain related now, rather than food. X
 

DustyKat

Super Moderator
So not normal ay Niks? :ghug:

I think it is fair to say that we all know our kids better than anyone and I don't think I would be wrong in saying that we would be the first to admit if we felt one of our children had 'issues'. I know from reading here over the past few years that we are the first admit if we think our kids are over reacting to something, or they are sensitive to something, or they are just being little buggers.

Go with your gut Niks, keep documenting and pushing for answers when you feel it needs to be done. I always look at this way...if I push for answers and they prove me wrong then I will happily take that with both hands and do the happy dance big time but if I am not proven wrong then I will not spend the rest of my life carrying the guilt of ignoring what I felt and so doing nothing about it.

You have been doing a fabulous job Niks and whatever happens from here on in you have nothing to feel guilty about. :) Kudos to you! Jaime is a very lucky lass to have you as her Mum. :heart:

Dusty. xxx
 
Thanks Dusty :D

I have never caused a fuss. When she was a baby she was referred to hospital for failure to thrive. She was such a big baby she just couldn't maintain that weight. From 9 - 18 months her weight remained the same. Back in October they left her notes on her bed. They said 'doctor and health visitor extremely worried about this babies weight gain. Mother unconcerned!!! Oooops!! Lol. I wasn't worried! She was fine. Her brothers were small. She was 9lb born and maintained 97th centile until she started moving. She was never you going to stay there!!

I have never been a worrier about my kids, but you're right Dusty you just know when something is wrong!!

Will keep records of what's going on xx
 
Hey Niks,
I just read about your recent appointment and I just thought I might tell you a little story about my sister. This is non- IBD related, but a similar situation.

When my sister was a young teen, she just started not feeling well, taking a lot of time off school. We found it hard to understand what was wrong with her but her main symptom was dizziness. She saw various specialists but she was always left with no diagnosis. As the years went on she just got worse, everything effected her. She just seemed to get tired like she was so weak and she couldn't get through a week at school. She couldn't even go on a short walk without it making her dizzy because of the way the road was or something.

The point of my story is that she was given no diagnosis, which she had to learn to deal with. She got even worse when she started her A levels. Her legs started giving way and she couldn't walk. It was so strange. But over the next few years she somehow learned to deal with it. She learnt the balance between pushing herself and taking it easy and managed to build her strength up.

She is at university now and doing really well. She now runs that walk she couldn't used to do! Medically we recently found out she has an irregular heart beat so we don't know if that has anything to do with it.

Anyway, I know you are going through nothing like this, but as Jaime seems to know how to live with it so well, no diagnosis doesn't mean its the end and it will always be this bad.

I do hope you get some answers though and she can get a better quality of life!

x x
 
No worries , good luck and god bless u both xx I think t appointment sounded like so many I have had a bit of a pass off, I feel like there is a tick box culture in nhs ! And if u don't fall into bowel damage or bowel cancer then its ibs and deal with it until it becomes bowel damage grrrr xx
 
No worries , good luck and god bless u both xx I think t appointment sounded like so many I have had a bit of a pass off, I feel like there is a tick box culture in nhs ! And if u don't fall into bowel damage or bowel cancer then its ibs and deal with it until it becomes bowel damage grrrr xx
I think you're right!!

When you did FC test did you do the positive /negative or did you pay more and get numbers??
 
You are much better off getting the numbers because positive and negative really doesn't tell you much, as there are so many things that cause a very slight rise- gastritis, oesophagitis (from repeated vomiting)...even some blood can cause it to be raised. Your GI may then turn round and say it could be that.
If you have numbers then it gives you a better idea of the likely cause of the rise.
Each lab has different ranges but usually <60 is normal in adults (babies and young children tend to have slightly higher values).
60-100 is borderline and they would suggest repeat in 6-8 weeks,
>100 abnormal and warrants further Ix,
>150 likely IBD.

NICE are going to be releasing their recommendations about calprotectin and the relevant numbers in october 13.

Hope this helps.

PS I had a private test done by Kings Path (Kings college) out of curiosity as our DGH doesn't do as yet- gstro want -hospital says no!. It was 706 on 2 weekly humira...so now on weekly humira. It can be very,very informative and useful.
 
Thanks Littlemissh. I did think it would be worth paying a bit extra for!! Will send off for the test. Can't hurt!! Xx
 

CarolinAlaska

Holding It Together
I am glad you posted an update so soon. I can't believe they are willing to leave her where she is and tell you that she is good now when she is still vomitting 4 times a day! How are her teeth taking this, by the way? Vomiting is very bad for tooth enamel. I am glad you are doing the Fecal Cal test. I hope it won't be blown off too. Have you considered having the Promethius labs done for genetic testing for IBD?
 
She will need to get to the dentist soon for sure! So far they look okay, but I am no dental expert!

Will see what comes back with FC tests but yes, would be worth looking into genetic testing. My grandfather died in his 60's of bowel cancer. Her Aunt had bowel cancer recently, in her 30's. Her Dad has diverticulitis and has had to have surgery to remove some of his bowel as so damaged. I guess there is some genetic bowel problems both sides!
 
Niks I've read about your latest appointment, don't accept it, seriously.

Doctors can wear you down to the point where you begin to doubt yourself.

I wasted 13 years of my life before I got anywhere and it took a lot of ups and downs and fighting against arrogant doctors. To this day my main GI is still trying to convince me of crazy ideas just to avoid admitting he's been wrong.

As my rheumatologist says, just because we don't know what it is, doesn't mean it's not there. Think about it, what didn't we know 50 years ago? What will we know 50 years from now that was once 'IBS' or a 'sensitive stomach'?

Sensitive stomach is a way for the doctors to fob you off and hope you go away. There is no part of what your daughter is experiencing that is normal or indicative of a 'sensitive stomach'. I've also had that label by the way, along with many other impressive non-commital ones like 'non ulcer dyspepsia'. Spent most of my life thinking I had a psychological problem because a gastro said I did... When I went to psychologist for evaluation she said there's nothing wrong with you and phoned my doctors to give them what for. They do NOT know everything and their egos will not let them hold their hands up and say 'we don't know'. It would be less dangerous if they did.

One thing I will say is that high FCP might not get you anywhere. I've had 4 high FCP readings and one normal and my main GI still tried to fob me off with 'false positives'. Other GI says probably IBD but can't say where. Another GI says ?crohns. Rheumatologist says ?IBD. Won't diagnose anything without further testing. They probably won't diagnose and treat off an FCP reading BUT it might get their attention, that's certainly what happened with me.

Don't stop fighting. Jaime might be coping now but what about a year, two years, ten years down the line? She cannot live like this forever, whatever coping mechanisms she is using just now can't last that long. I coped well for 13 years before my first hospital admission and I'm still bearing the anxiety/stress/fear of that now even though I'm in very little pain. Sorry to be so pessimistic but I really do feel for her, and I don't want doctors who don't want to admit they don't know everything to get in the way of her improvement like happened with me.

Has she ever had autoimmune disease testing by any chance or seen a rheumatologist?
 
Isgs, thanks for your message and thoughts.

Did you have times when you thought things were a little better and could cope with things? I know Jaime is not still back to how she should be, but she is coping so much better and just being well enough not to have to think about whether we should be heading to the hospital, or calling them, or going to GP is a massive step up for her! She's been so unwell since August/September last year. Symptoms started June last year. (Previously had similar and always had pain from 15 years)

I agree with you, I do think there will be more to come and then we will start fighting again. (I really hope not! I hope that what ever it was/is just clears itself - doubtful I know but surely not impossible)

I also think that her FCP tests will come back normal! Everything else with bloodwork etc does! But it would put my mind at rest.

Jaime has never seen a rheumatologist. How do they test for autoimmune disease? She has when really poorly had lots joint aches and pains and could barely get up or walk up the stairs! This thankfully didn't last long! She looked like an old lady!

Jaime has been admitted to hospital 9 times since last October. Once overnight the rest 5 - 14 days. At least 4 other times they wanted to admit her. This is just crazy and I really hope we never get back to that!

I really hope you get answers soon too! Sounds like you've had a real time of it :( :ghug:
 
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my little penguin

Moderator
Staff member
I agree rheumo might be the way to go - they handle alot of auto immune diseases
not just rheumatoid arthritis btw.
One they handle which would explain the things look bad in the colon then fine then bad etc... would be bechet's

http://behcets.org.uk

http://behcets.org.uk/information-for-patients/how-is-behcets-disease-diagnosed/

At this point I don't think it could hurt.
Rheumo was the one doc who helped us get all the other docs on the same page for Ds and he does not have rheumatoid arthritis
 
Isgs, thanks for your message and thoughts.

Did you have times when you thought things were a little better and could cope with things? I know Jaime is not still back to how she should be, but she is coping so much better and just being well enough not to have to think about whether we should be heading to the hospital, or calling them, or going to GP is a massive step up for her! She's been so unwell since August/September last year. Symptoms started June last year. (Previously had similar and always had pain from 15 years)

I agree with you, I do think there will be more to come and then we will start fighting again. (I really hope not! I hope that what ever it was/is just clears itself - doubtful I know but surely not impossible)

I also think that her FCP tests will come back normal! Everything else with bloodwork etc does! But it would put my mind at rest.

Jaime has never seen a rheumatologist. How do they test for autoimmune disease? She has when really poorly had lots joint aches and pains and could barely get up or walk up the stairs! This thankfully didn't last long! She looked like an old lady!

Jaime has been admitted to hospital 9 times since last October. Once overnight the rest 5 - 14 days. At least 4 other times they wanted to admit her. This is just crazy and I really hope we never get back to that!

I really hope you get answers soon too! Sounds like you've had a real time of it :( :ghug:
I definitely had times where things were better. Unfortunately (as I'm sure you can relate to) it's all relative, and things aren't really 'better' so much as 'less bad'. It wasn't until I got a bit of proper treatment that I realised all those times I thought I felt better, I just had no concept of what feeling well was. And even now my concept of feeling 'well' is still very different to your average person. I recognise that in what's happening with Jaime in that you're saying she's feeling the best she ever has when she's still vomiting every day - that is NOT acceptable and at the very least she should have more symptom management even if they can't tackle the root cause.

What I would also say is though, take a break if you need it. Take a break from doctors, hospitals, tests, results while she's doing okay. Then when/if you need to pursue things further you won't be so bummed out from constant hospital visits you'll have the energy for it. That's what we're doing at the moment. I need to have a small bowel MRI but I've put it on hold because I'm doing well. I'd got so fed up of hospitals I needed a break!!!

Rheumatologists deal with a whole host of illnesses that cause bizarre symptoms that don't show up in scans and quite often not in bloods until late stages of disease. So symptoms can be quite persistent and the bloods can be normal until it has progressed far. Think things like lupus, behcets, rheumatoid arthritis, all poorly understood diseases. I got diagnosed with sjogren's syndrome by my rheumatologist 5 or so years ago and it took them until 2 months ago (and one 5 min appt with a new GI!) to realise it was affecting my pancreas. Since I've received treatment for that I feel the best I ever have.

These sorts of diseases are diagnosed by blood test. Things like anti-nuclear antibody (ANA), rheumatoid factor, autoantibodies like anti-ro, anti-la, and many other things can be tested but they would NOT find them unless they were looking for them. It's a specific panel they need to order. Sometimes there is a giveaway in the ESR/CRP but not always. Also in my experience rheumatologists are very understanding, empathetic, warm doctors who really want to help you, even if they don't know exactly what's wrong with you. I would never have been on prednisolone if it wasn't for my rheum. They are totally different to GI's who seem to want to put obstacles in the way unless you fit into a neat little diagnostic box, which few people do. My rheumatologist has been an absolute lifesaver, he spent hours and I mean hours getting me on steroids and coaching me through the various dosing changes. He's always on the end of the phone (personally) if I need him and will see me the next day if I need help. Very valuable type of doctor to have an input from as they will search for answers even if it's not necessarily their remit/field. Also more likely to treat without a definitive diagnosis (I was put on pred without a diagnosis!)

Might be worth watching the latest episode of 24 hours in A&E on channel 4 to see the extent of pain autoimmune disease can cause - young guy with behcets was on it!!

Sorry for rambling, haha.
 
Location
Canada
Also in my experience rheumatologists are very understanding, empathetic, warm doctors who really want to help you, even if they don't know exactly what's wrong with you. I would never have been on prednisolone if it wasn't for my rheum. They are totally different to GI's who seem to want to put obstacles in the way unless you fit into a neat little diagnostic box, which few people do.
It's a rheumatologist love fest!!! I agree with the above.
 
Might be worth watching the latest episode of 24 hours in A&E on channel 4 to see the extent of pain autoimmune disease can cause - young guy with behcets was on it!!
I think you are right about taking a break. She has an appointment on 2nd July, which she is wanting to cancel because she feels that there is no point in going, if she is doing a little better and coping!

I did see 24 hours in A&E! What a horrible disease :(. It seems he got diagnosed at 18 while he was admitted in hospital. (I think the first time he was admitted) His main problems are joint pain, especially knees and legs.

Where do you live Isgs? Was it easy to get a referral to a rheumatologist? Were you referred for joint pain?

xx
 
Location
NY
We've also been to rheumatologist and infectious disease ... but neither led to a diagnosis. No regrets though. The rheumi was willing to let Danny try Humira (for juvenile arthritis, even tho he suspects Danny has Crohns).
I understand Jaime's thinking of wanting a break. After 3 years of near constant dr appointments, Danny wanted a break too. Fortunately, he is still doing much better (still constant pain, daily D, and some fatigue) and is functioning pretty normally (made it thru school this whole year!)
 
I think you are right about taking a break. She has an appointment on 2nd July, which she is wanting to cancel because she feels that there is no point in going, if she is doing a little better and coping!

I did see 24 hours in A&E! What a horrible disease :(. It seems he got diagnosed at 18 while he was admitted in hospital. (I think the first time he was admitted) His main problems are joint pain, especially knees and legs.

Where do you live Isgs? Was it easy to get a referral to a rheumatologist? Were you referred for joint pain?

xx
I live in Glasgow, Scotland. I got referred to a rheumatolgist via my GI at the time. I was being seen on private health insurance before I got kicked off and rheumatologist saw me once and took me on as an NHS patient at his hospital.

I was referred on my GI's hunch that my ESR being raised was something autoimmune, he tested my rheumatoid factor and it was positive so then he referred me to the rheumatologist for diagnosis. At that point I had little to no symptoms of sjogren's (a few extra fillings due to dry mouth and couldn't wear contacts any more due to dry mouth but never thought anything of it at all) the joint pain etc came later. Essentially I was diagnosed 'by accident' while looking for the cause of my gut problems.

Might be worth a shot :)
 
Nike,
If you can get a good rheumo might be worth a shot. We had a bad experience with one here in florida who told us, oh there is no joint pain related to crohns disease. Needless to say we did not go back to him.
 
Ok - quick update.

Jaime's pain has got worse :ymad: She also has pain in her back now. Her bowels are moving which is good. But LOTS of blood :confused2: Water red and TP literally completely covered. She has taken pictures to show GI at next appointment, but pretty sure nothing will come of it! Her appetite is not great at the moment either, so she is supplementing with Fortisip.

Vomiting still but less frequently. I just wished so much that someone would diagnose her properly!
 
If I were you I would email the picture to your GI. If there is a lot of blood then I am sure that they would want to know and see what you mean by lots of blood.

It may kick them into action, but only a small amount of your time wasted sending the email.

Have you enquired yet about the calprotectin test or are you taking a breather?
 
I am waiting until I get paid, then ordering the test (Friday). I have asked Jaime to e-mail GI. She won't! She has the picture on her 'phone, so I can't do it. Plus the GI at the last appointment asked me not to e-mail him and he would rather hear from Jaime herself! Great huh.

She is obviously worried about it otherwise she wouldn't have told me and taken the picture in the first place.
 
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