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Crohn's Disease Forum » Your Story » Unsure where to go from here


06-26-2012, 12:30 PM   #1
abbie
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Unsure where to go from here

Hi, I've been having problems since approx march 2011. My symtoms are, chronic diarrea, malabsorbtion, pernicious anemia, bloody stool, very painful belly ache, muscle and joint weakness, nausea urgency and increased frequency.

On the 1st of June this year I finally got my endoscopy, only took a year of waiting!! Well during the proceedure for gastoscopy they mentioned a 'flat stomach' I don't know what that means, and then for my colonoscopy they saw patches of inflammation ( to me they looked like little red pin pricks that are clumped together and look very sore. They mentioned during the processors colitis.

I rang my doctor as I seem to have got worse I can't walk without being in absolute.pain. His advice take painkillers. 2 days later I ended up in hospital with a large bleed. The toilet was covered. The doctor at hospital said she thinks its an ibd and I needed treating right away. Well I haven't

I went back to my gp following advice from hospital and my gp said I've been sent to a.specialist he won't do anything won't even speak to me about it and had the check to say they found nothing on my tests and I was lying I had ut with me to show him but he didn't care.

I'm getting worse and I don't know what this is or what I can do to make it better can anyone help :'( im beginning very depressed over it and im stuck thanks
06-26-2012, 08:22 PM   #2
David
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Hi abbie!

My god, what the heck is going on over there?

Paging astra to give you some advice, she's good at the NHS smack down.

It definitely sounds like you have some sort of IBD (probably Crohn's considering the low B12) and absolutely need to be under the care of a GI. Frankly, if others can't suggest a better idea, I would go to the A&E and raise hell until they brought in a GI to see you. But others may have a better idea.

You need to be seen and start treatment soon. Oh, and get a new GP. And file a complaint against the old one.

*hugs*
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06-27-2012, 05:34 AM   #3
Angrybird
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Hi Abbie and welcome to forum. I am absolutely disgusted with the lack of care you have received from your GP I can only agree about asking to be put under a new one and putting in a complaint about the old one.

With regards to the scope you had was is your GP are a GI at the hospital who organised this? If it was the GP then see if you can push to see a new doc at your surgery as an urgent appt today and see if they can at least get a referral to a GI sorted and hopefully some meds to help with your symptoms in the meantime. If this is not possible and you still feel very poorly then get back to a&e so they can get an oncall GI to see you, kick up a stink if you have to, it is important that you get the care and treatment you deserve.

Pls keep us updated on how you are getting on.

AB
xx
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Angrybird

DX: Crohns July 2002
Surgery: Ileocecal Resection Sept 2011
Now:Tummy behaving itself and new mummy to baby Nicholas
Current Meds: 6-MP 75mg,B12 injections every 3 months
Previous Meds: Budesonide, Prednisone, Remicade, Pentesa,Hydroxychlorequine,Azathioprine (tried twice) and Methotrexate
06-27-2012, 09:21 AM   #4
abbie
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Hi I went to the doctors n he just kept saying he's not a specialist I had to fight to get my vitamins checked again. But They refuse to check my b12 as im on injections. I'm under a gi but they lost my notes but rang me today to try n get me an appointment as they need to see me. But im very confussed as both me and the doctor saw clear patches of inflamation but my biopsies came back clear. I don't know what they tested for on the biopsies. But my blood is also showing no.inflamation when there clearly was alot. Has this hppened to anyone else and they still got sorted just feel like its not worth trying anymore no one seems to listen or care. I'm hopefully going on dla as I have been on esa a year now with this and because of this anemia i can't walk to the shop 5 mins away without being in pain, i can't get in and out of the bath or tie my hair up i feel like a granny but im only 18. Just really want this all to stop now. My husband has become a full time cater for me after 2 years of marriage and i feel irs unfair :'(
06-27-2012, 10:14 AM   #5
Gculk
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Bloods don't always show inflammation. So don't worry about that. Inflammation shows inflammation. Inflammation in the bowels, which they saw, is serious and needs attention. Raise hell till you get it!

Good luck

Nathan.
06-27-2012, 01:00 PM   #6
Catattack
 
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Absolutely....My bloods showed no inflammation. My GP said that I have IBS and basically 'get on with it'. I refused to leave the room until she wrote me a referral letter to a GI. Colonoscopy etc showed that I had Crohns. My biopsies also did not confirm Crohns but my consultant could see very obvious inflammation (like you said you saw) and that is the main part of the diagnosis. Basically some GPs need to be told 'please refer me to see a specialist'. You are entitled to see who you like and it's not ultimately up to the GP. If I was you I would definatley see a new GP..even sign up to a new surgery and start afresh. You said you were already seeing a GI? If you want to be referred to another one then you can...go back to your doctor (a different one I suggest) and be re referred. There are so many medications to help you that really work well it's ridiculous that you should suffer like this. Make sure you write down all your symptoms and go in armed and ready so you dont forget anything.

It might be worth looking up the Gastroenterologists in your local hospital(go onto the hospitals website) and search for one that specialises in Inflammatory Bowel disease (as not all Gastroenterologists are 'into it' if you know what I mean) and then ask (tell) your new GP that you would like to be referred to see Dr.....

I hope you get sorted soon.
Take care
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06-27-2012, 01:10 PM   #7
abbie
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How did they find it was chrons do they just look at your symtoms and the endoscopy pics, hopefully should get a letter tomorrow saying when I have my follow up. fingers crossed everything goes ok thanks everyone your making this feel alot better xx
06-27-2012, 01:34 PM   #8
Catattack
 
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Yes they went on symptoms (diarrhoea 6-10 times a day with blood) and colonoscopy pics. They saw inflammation in the ileoceacal valve (the bit joining the large and small intestine) so I also had a barium meal x ray which showed that the terminal ileum was also inflammed. Basically if anything more than the large bowel is affected it's definatley Crohns. If it's just the large bowel its more likely to be Ulcerative colitis (but could still be Crohns). Either way the treatment for both types of IBD are similar. My consultant said it's quite usual for the biopsies to not confirm Crohns and so he takes them with a pinch of salt...and as for blood tests he said they can be very unreliable. The main thing is what they saw on the colonoscopy.

Xxx
06-27-2012, 03:44 PM   #9
Astra
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Hiya Abbie
and welcome

Poor you, but we're here to help, try not to fret.
Ok, firstly, bin this current quack, and register at a new one, this will help

http://www.direct.gov.uk/en/youngpeo...re/dg_10031481

Once registered, start from scratch, get a referral, to a different hospital, hopefully one with a team of specialists in IBD
http://www.nhs.uk/choiceintheNHS/You...ahospital.aspx

If you're stuck, phone PALS

http://www.pals.nhs.uk/

also, read the info here, lots of downloads on getting help
http://www.nacc.org.uk/content/home.asp

You're 18 now, now an adult and time for them to take you seriously, start phoning!
good luck Abbie, any questions give us a shout!
Lotsa luv
Joan xxx
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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!

06-28-2012, 06:36 AM   #10
Gculk
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Yeah the biopsies are just luck, the definitive characteristic is granulomas. If they are present, which they should be in the context of Crohn's, there is still spacing between them where concievably a biopsy could be taken and miss the granulomas. Absence of evidence is not evidence of absence.
06-28-2012, 06:54 AM   #11
momofzach
 
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I have never been so glad to be an American after reading about the healthcare some of you are experiencing. A year to get an endoscopy- seriously?? That's unheard of. The first thing they do if you go to the ER with GI issues is refer you to a GI specialist, in a week or so you have an appointment and in another week you have a colonoscopy, etc. That's been my experience anyway, having Crohn's close to 20 years, as well as been an RN. I've never seen or heard of such incompetent healthcare until joining this forum. God Bless America!!!
06-28-2012, 06:56 AM   #12
Gculk
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Yeah, land of the free, unless you've got a co-pay, deductable, or go over your benefits cap. :P
06-28-2012, 07:05 AM   #13
momofzach
 
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Yeah, land of the free, unless you've got a co-pay, deductable, or go over your benefits cap. :P
LOL, well, we do pay for it, but at least we get the help, right?
06-28-2012, 07:45 AM   #14
Gculk
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Not saying your service isn't good, but there are major issues. Just thought I'd have to point it out in a snarky way.

Also, considering some of the stories here, you'd often be paying, then getting the whole 'IBS/you're bonkers treatment'.

Nathan
06-28-2012, 08:07 AM   #15
momofzach
 
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Not saying your service isn't good, but there are major issues. Just thought I'd have to point it out in a snarky way.

Also, considering some of the stories here, you'd often be paying, then getting the whole 'IBS/you're bonkers treatment'.

Nathan
Oh there are definitely issues, but I pay 30 bucks to see the doctor, and get in right away. I was lucky enough to have "classic Crohn's ileitis", that basically showed up on the first CT scan I ever had, and all tests since then confirmed it. Didn't mean to step on any toes...
06-28-2012, 08:14 AM   #16
Gculk
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Hah, no toes stepped on. I was the one who was snarky. You sure you're not Canadian like me, apologizing unnecessarily like that? :P

Yeah I wish our system was a bit more timely, that's a work in progress I suppose. That said, we should stop derailing.
06-28-2012, 08:18 AM   #17
Keepingfaith
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Well, inflammation doesn't mean you have Crohn's nor does it mean you have IBD. Inflammation can be caused by NSAIDS, Infections, bacteria etc. A friend of mine was misdiagnosed as having Crohn's just because the pill cam showed inflammation in the ileum/small bowel. Turned out all she had was an infection.

If you continue to get worse, I would go to the ER. They can give you pain control, run some tests & give you fluids. The fluids alone give me so much relief! You never realize how dehydrated you are until they pump you up with sodium/potassium

Hang in there! It gets better! The 'getting diagnosed' is a big battle in its self & most of us know the frustration! *HUGS!*
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Current medication:
Entyvio
Imuran
Entyvio
Prilosec
Protonix
Seasonique
Noritriptyline
Steroid suppositories
Canasa suppositories

Diet: Feeding via J-tube

DX: Crohn's Disease, Juvenile Rheumatoid Arthritis, Endometriosis, Gastroparesis

Previous Medications:
Remicade- Drug Induced Lupus, Humira, Prednisone,
Entocort, 6MP, Methorexate, Amitriptyline, Asacol, Flagyl, Apriso, Cimzia, Cipro, Sulfasalazine etc. You name it, I've tried it.
07-10-2012, 04:22 AM   #18
abbie
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Hi thanks for all the support been arguing with everyone to get this sorted I have even been on a&e I've had three doctors confirm ibd and tell me I need treatment straight away, but there not the person to do it so I now have to start from scratch get a referral to a medic or something like that and then wait it out, been having flare Ups nearly every day and I feel so rubbish but on a good note after arguing with my doctor and saying I still don't feel right even after my b12 injection he finally did a blood test which showed very low iron and very low folate which is what I told them about 2 months ago. So im back on 2x iron and 1x folic acid followed by 2x complan vitamin shakes and a healthy diet full of vitamins. Still don't feel any better, how do I know if im dehydrated been having alot of watery poo, I feel sick still and get headache quite a bit so im not sure if I need to look out for dehydration x
07-10-2012, 09:48 AM   #19
David
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I'm so sorry you're having to go through this abbie

*hugs*
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