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03-30-2011, 11:45 AM   #1
StarGirrrrl
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Latest GI appointment, goodness me.

I won't repeat myself again as most of you have read my other posts and you've read my concerns as to the "treatment" I have been recieving from my GI.

Well to say I am livid is an understatement. He went through the Pill Cam issue, apparently he had a conference with all the other GI's and 2 radioligists and they decided it wouldn't do any good if I had it and they only found one ulcer for example.

They have now said the WBC scan is not positive, despite being told last year it was, and having additional tests on the strength of it.

And the best part of all, when I brought up the consistently high CRP for almost 5 years now (last but one time it went up to 36, 28 at last reading), he said to me "we'll, let's just ignore that". I kid you not. A Consultant telling me to ignore up repeated abnormal findings because it does not tick his boxes or fit in with his theory that it's IBS.

(even if it did turn out to be IBS they would need to find the source of the CRP anyway, they can't go on ignoring it)

So Mum forced the issue of how ill I am and he's given me some meds, I am taking them grudingly but you must show willing I suppose.
Domperidone 10mg 3xday
Spasmonal/Alverine Citrate 60mg3xday
Omeprazole 20mg 2xday
Fluoxetine 20mg 1xday

I really didn't want to take the latter but he was keen and so was Mum so I agreed. The Amitriptyline is out, apparently I can stop that right now, thought you had to come off that slowly but am only on a 10mg dose anyway, if it goes badly then it's not my fault is it! I had that prescribed for IBS and noticed when I tried to come off that (supervised) a few years ago, as soon as I was taking it every other day my symptoms came right back. But recently I missed 2 pills in a row and didn't notice until I went to the pack- I was really shocked I hadn't had problems! So at least GI & I are in agreement on that issue, that it's not doing anything for me.

I will be starting meds tomorrow or Friday, need time to absorb the info leaflets and contact the Pharmacy if I need to know anything.

So he's sending me to a dietician which will be a complete waste of everyone's time, and has ordered an ultrasound of my liver and gallbladder. And I see him again in 2 months.

His parting shot was if things got really bad to give him a call!

I will try the meds but in the meantime I will be seeking a second opinion, it's clear to me that Hospital are biased and not doing a good enough job. So I'll be seeking a specialist at another Hospital, will ask here and contact Crohn's & Colitis UK for some help, and get my GP to refer me. Just to have an unbiased view of my case would be wonderful, and if it happens to be someone who realises IBD doesn't always tick the boxes would be even better. And if I could be given a Pill Cam by another Hospital that would be even more wonderful.

I will also send in an official complaint over the WBC scan issue, what I will ask is for the clinical info only upto the time of that test be given to every radioligist in the Hospital and any senior staff and have them all look at the report and images and give an unbiased view. I will ask for my name my Hospital number (if they can) be blanked out so there is 0 bias, and they can report back to the named person dealing with my complaint.

The irony is, my Hospital is a teaching Hospital, who's betting in the near future they will be using my case as a "how not to" conduct themselves!

Just gives me more ammo for my legal case, they do not realise my Aunty is friends with a Barrister, who herself suffered medical incompetence when her10 year old son was examined for tummy pains, told it was growing pains and all in his head and to see a shrink, well they had a second opinion and poor boy it was his appendix, it had to come out fast!

But the good part is all the antibody tests for Lupus came back negative which I am happy about!
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2006. Tummy issues (more IBD than IBS).
2009 joint pain/worsening tummy issues.
CRP 20-36 2006-now. C3/C4 inflammation markers huge,
2014 IDA & low B12.

June 2014 admitted to Hospital 3 nights as emergency transfused 2 units of blood. Dangerous case of anaemia.
Caught by pure chance!
Cause currently unknown but suspected CD.

Waiting on blood & stool results from January.

Hoping to stop anaemia treatment soon & lower B12 daily dose!

Last edited by StarGirrrrl; 03-30-2011 at 12:12 PM.
03-30-2011, 12:11 PM   #2
Mark63
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Hi,

I think that I'd be looking for a second opinion as well. Not sure about the protocol, but your GP should be able to sort it for you. Unfortunately, it's likely that they will want to start from the beginning, so wait for consultation plus repeated tests equals no quick answer. Lets hope that it's worth the wait and you get the treatment that you need at the end of the day.

I think that the guys that I see at UCLH are very good. I just wish that the treatment actually worked! Perianal Crohn's is very difficult to treat.

Mark
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03-30-2011, 12:17 PM   #3
monkey
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Mark, who is it that you see? I'm absolutely desperate for a second opinion, but want to make sure I see someone good this time!
Star, your story is very like mine, absolutely ridiculous!! The worst bit is when you know they're not treating you appropriately . . . My friends dad is a GI at the same hospital and has been checking my tests etc, he called the surgical team when I was admitted to the hospital, my consultant said i had IBS!!!! Can totally sympathise. Hope you get it sorted!!
03-30-2011, 01:14 PM   #4
xJillx
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Oh, Stargirl, I am so sorry! I can feel your frustration! I certainly agree it is time you seek another opinion. I am floored the "well, let's just ignore that" comment! Unbelievable! I hope you find a doctor who will help you get the answers you need.

PS - I am so happy your antibody test for Lupus came back negative, too!
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03-30-2011, 02:15 PM   #5
Astra
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Hi Star

I'm glad you've got a cunning plan, scare the crap outa them, they deserve it!
Remember it's your right to choose your own specialist and hospital as a UK citizen, your GP has to comply, so good luck in persuading him!
That goes for you too Monkey, you both deserve the best and a break, your quacks are horrendous imbeciles!
xxxx
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Dx Crohn's in TI 2005 symptoms for 15 years prior

BEEN ON -Azathioprine, 6MP, Prednisolone, Pentasa, Budesonide, Metronidazole, Humira, Methotrexate,

NOW ON -Amitriptyline 25mg
21/02/14 Right hemicolectomy surgery




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No-one should make you feel inferior without your consent!

03-30-2011, 02:23 PM   #6
StarGirrrrl
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Thanks everyone! I have a great GP, she is great, and not going to be happy when I tell her what i've been told lol, saw her at the very start of this when I went to her with my swollen arm, she has been as frustrated as me!
When I saw her after the WBC scan, she said she wasn't surpised it was IBD and not IBS, as she'd looked through my history and said there were signs there.
03-30-2011, 05:02 PM   #7
Jennifer
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I thought this was your second or even third opinion already since I've seen you on the forum for so long with no diagnosis. Yes! Please do get a second opinion. Those doctors at that hospital sound awful. Its good to have a great GP. I'm glad that my current one understands IBD so well he didn't even question and look at the paperwork when I came in for my first B12 shot with him.
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
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Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
03-30-2011, 05:59 PM   #8
StarGirrrrl
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Thanks Crabby (I always feel funny calling you Crabby lol), well excluding the previous diagnosis of IBS i've been with the same Dr since I was sent back in late 2010, everything has just taken so damn long, it was 2009 when the other issues started, sent to Orthopedics and Rheumatology before I landed back at Gastro, needless to say I have had it with them!

In the meantime I will try and get a sooner appointment with Rheumy (mid July) but they are really busy so don't know if that will happen.

Last edited by StarGirrrrl; 03-30-2011 at 06:30 PM.
04-04-2011, 05:00 AM   #9
StarGirrrrl
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Got my ultrasound booked for 10 days time, would be great if it turned out to be my gallbladder and taking it out would solve all my problems but I don't think so Since the WBC scan (and yes it was positive!!) found the inflammation in my left lower quadrant. I only found this out recently, months after I told GI pain is bad both sides but tends to be worse on the left. If liver and gallbladder can be passed as normal maybe (and this is a biggie with current GI) he might tend towards IBD again.

And on the subject of the now infamous WBC scan, 2 weeks before it was pronounced normal he had a consult with Radiology to discuss scanning me again- ruled out as an unneccessary radiation risk- so why wasn't it pronounced normal then hmmm??

Found a GI center in London that looks promising for a second opinion.
Started new meds yesterday and one is supposed to be anti-nausea, been feeling so sick since I started yesterday morning! Hopefully, it's just my body adjusting.

Last edited by StarGirrrrl; 04-04-2011 at 05:03 AM.
04-04-2011, 06:06 AM   #10
e13 boy
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Star,

I hope you find somebody who is willing to help you more.I went through a few of the things you mention,especially raised CRP, time after time they got it wrong.The white cell scan was my final confirmation 13 years ago & it finally convinced them i was ill.Within a week i had right side hemi.

I can understand how frustrated you must be.
I wish you well in finding the help you need.
I was given amitryptiline by one Dr,it did NOTHING to help me,i think he was fed up with me as i'd finally started to show my anger in clinic appointments.With all the mistakes they made over the years i was at breaking point.
Thankfully i found the help i needed.

Best Wishes
04-04-2011, 10:21 PM   #11
MADiMarc
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Star,
Just ignore that...this comment takes the blue ribbon prize for idiotic utterances!

I hope you get your answers & some relief soon. You deserve some peace.


Michele
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04-05-2011, 05:30 AM   #12
StarGirrrrl
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Yeah I won a prize haha! You've got to laugh, if not i'd go mad (and am so close to that sometimes).
e13, thanks for your kind words, I just wish my scan was taken seriously, instead of declared normal after a year, only because other tests have, not on it's own merits, when it was declared positive!
A second opinion is def the way forward for me, but the travelling and money side will be very hard, but as much as I am hoping my current GI will change his mind, it ain't going to happen. And it will take so long too
04-11-2011, 04:15 AM   #13
StarGirrrrl
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Hi everyone, here is the latest update. Heard back from Rheumy who feels we should accept there is no IBD but IBS after 2 views from the same department. Still not willing to do that for reasons I have gone into, and I am not responding to the meds I have been given for it after 7 days (my understanding is 2 out of 4 should work quite quickly). In fact my nausea has increased ten fold and that's no exaggeration!

He wants me to do some more bloods, all of which have been done in the past and come back negative (immunoglobins, serum ACE, cortisol (he wants a 9am reading, not sure I can do that this week so either will wait until next or just do it Thurs afternoon when I go for gallbladder scan) and serum protein electrophoresis.

Got to record my temperature 3-4 times daily (when I can find my themometer) and he's going to try and arrange a FDG-PET scan which he says is a scan to look for discreet inflammation sites (this I am happy about- if they find it in the digestive area again surely something will come of it this time!!) but he may need to ask special permission on cost grounds.

He also asked again about skin rashes but I have nothing new apart from what I told him last year, if an expert wants to look at it it'll be another few month before it's out (been getting a rash for years on same sites, a combination of heat and sun I have concluded, anti-histammines for a few days calms it for whole summer almost). Again he asked about close family with psoriasis, still got none!

He said if tests come back negative and they are decided it is not a recurrent infection then we are looking at a trial of immunosuppressants which may involve steroids, but probably high dose Methotrexate over 6 months. But there is no way I am taking immunosupppressants without a reason ie diagnosis!

So gallbladder & liver scan Thursday, does anyone know, if it's found to be not working and/or needs to come out, can they tell me if it's due to Crohn's or will they not be able to tell?

I have to say I was having doubts about the second opinion, still wanted it but just the practical side of travelling to and from London and the finances etc. But I think this has decided me! Just need a few more weeks to think about it and hopefully my GP will be happy to refer me despite the consensus at Ipswich Hospital.

Last edited by StarGirrrrl; 04-11-2011 at 04:21 AM.
04-11-2011, 11:27 AM   #14
xJillx
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I know a second opinion can be a hassle and costly, but your health is worth it. And it certainly seems like it is time.

Good luck and let us know how Thursday goes!
04-11-2011, 02:39 PM   #15
StarGirrrrl
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Thanks Jill! At the moment I am all for a second opinion but think it will be prudent to wait until after the new scan... It may just prove I have IBD and not IBS beyond reasonable doubt (if inflammation comes back lower left, like WBC scan, let's just say I will go mad at them, never mind what Mum will do!!).

I will float the idea to my GP when I get the other meds put on my script.

Also told GI now if no improvement on abdo pain by the end of the spasmonal box (100 pills) i'm stopping them since i'm not taking something that is not working, and if the nausea doesn't improve, i'm then stopping the domperidone as 95% sure one/both of those is reacting.
04-17-2011, 05:47 AM   #16
StarGirrrrl
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Scan went fine on Thursday, told all looks normal.

Now fingers crossed for the other one.
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