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Crohn's Disease Forum » Your Story » Diagnosed but untreated


03-26-2013, 07:47 AM   #1
Paulgill1983
 
Join Date: Mar 2013
Location: Glasgow, United Kingdom
Diagnosed but untreated

Hi all

First post on this site. I had a portion of my lower and larger intestine removed just before christmas 2012. I was diagnosed with Crohn's desease but am still waiting to be put on any medfication. It is now three months after my operatiopn and I am suffering daily. The doctors just keep reffering me around to 'specialists' but no one has actually given me anything.

Is there anything I can buy online to help.

any help would be greatly appreciated.

Thanks

paul
03-26-2013, 07:53 AM   #2
BeccaH
 
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Hi Paul

If it is serious enough to have a section of your intestine removed you need to be on medication.

I would ask your GP to refer you to a GI doctor, which you should then be able to stay under. Ask your GP for medication in the mean time as it sounds like it is needed.

I was referred for tests and diagnosed and now I go every 3 months or so.
03-26-2013, 08:41 AM   #3
Clash
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Welcome to forum! Since the resection have any of your docs mentioned why they aren't prescribing a maintenance medication? Could you possibly ring your GP or consult and explain to them your symptoms and insist on a med to keep things under control? Just keep pushing with each of your doctors until one of them listens. I'm so sorry you are having problems still.
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C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
03-26-2013, 10:06 AM   #4
Angrybird
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Hello and welcome to the forum.

I too am wondering what explanation you have been given for why you have not yet been put under the care of a GI doc and started on treatment for your crohn's? Have you had any type of follow up appt with the surgeon since your op and what symptoms are you currently experiencing? Do you notice whether certain foods make things worse at all?

AB
xx
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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
03-26-2013, 01:30 PM   #5
Paulgill1983
 
Join Date: Mar 2013
Location: Glasgow, United Kingdom
Hi all

Thanks for your reply's. A week after my operation I met with my surgeon who put me on Laprazole (later found out this was for acid build up?!?) and co-codomol to slow down my bowel movements. I have been taken these for three months.

I had a 'specialist' appointment this morning but it turned out he was a liver specialist and in his words 'didnt know much about crohns' I waited three months for that appointment. My GP keeps saying he cant prescribe anything and that its better i speak to a specialist. I was told today that I was being reffered to another specialist department. Another 6-8 weeks. I didnt catch the name of it as im so fed up with the whole thing.

Thankfully my parents have called round hospitals and have a few names of specialists that I can call tomorrow.

Thanks again for your support guys, if I dont get any answers tomorrow I think I will purchase medication online. I am a big supporter of the NHS but this is testing my loyalty.


Many thanks

Paul
03-26-2013, 01:32 PM   #6
Paulgill1983
 
Join Date: Mar 2013
Location: Glasgow, United Kingdom
Sorry meant to say, symptoms are a stabbing type pain in my abdoman and a general aching under my ribs. Also still having around 6/7 bowel movements a day. General bloatedness and alround a bit rubbish
03-26-2013, 01:53 PM   #7
Clash
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So, Paulgill1983, it does sound as if your CD isn't under control and you need to be on some type of maintenance med. Is your GP unwilling to prescribe even prednisone, as it usually gets inflammation under control quickly? If you have been diagnosed with CD, then in the UK aren't you given a consultant that acts as a liason to your Gastroenterologist(GI), is there any way you could contact the consultant and let them know your symptoms?
03-26-2013, 02:00 PM   #8
Paulgill1983
 
Join Date: Mar 2013
Location: Glasgow, United Kingdom
Hi Clash

Yes I think I am supposed to get a consultant but the Gastroenterologist I went to today didnt have a clue. Even said that to me. I am going to make an appointment tomorrow to see my GP again and get some answers. I will suggest all of the medication that I have read about in the forum and hopefully something will get sorted.

hope you are well.

Paul G
03-26-2013, 02:41 PM   #9
Clash
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I hope you are able to get somewhere tomorrow with your GP. I see you stated that you had a portion of your small and large intestine removed. It may be a good idea to have your vitamin levels for B12, Vitamin D, Folic acid and possibly magnesium checked most IBD'er are deficient in one or more of these vitamins and the location of your surgery may add to that. Deficiency in these vitamins can cause symptoms and issues. Good luck at your appt!
03-26-2013, 03:55 PM   #10
Angrybird
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Based on my own personal experience there is no reason for a doc at your GP surgery not to be able to prescribe something to help with your tum (such as steroids as mentioned above). Whilst a GI is usually required to discuss a long term treatment plan it then falls to the GP to do any blood monitoring if required and to sort out the repeat prescriptions. I'm also surprised that you didn't have further follow up with the surgeon as they wouldn't have been able to make a comprehensive assessment on how you are doing only a week after the op (I saw my doc 8 weeks after my surgery for a final appt). If you are not able to get anywhere tomorrow then perhaps contact PALS as after the type of op and diagnosis you have had you shouldn't have then been left for 3 months to then see a doc who couldn't do anything to help you. Please keep us updated on how you get on.
03-26-2013, 05:37 PM   #11
KazT17
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Hi Paul. My hospital has specialist IBD nurses, I would imagine yours does too. Call the hospital and get their number. I usually leave a message and they call back the next day. I am sure they will get you in to see the right consultant as soon as they can.
I have just looked at my hospitals website, the IBD nurses number is on there and an email address.

Good luck xxx
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Crohn's diagnosed 2010
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03-26-2013, 06:24 PM   #12
blazeking
 
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They won't prescribe you meds for crohn's??? WTF? You gotta get in their faces which I know is difficult right now but can you get a patient advocate? Wife, mother, anyone? Untreated crohn's flare is not a walk in the park it's a very trying experience depending on level of flare.
03-26-2013, 06:27 PM   #13
blazeking
 
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Remember, you can't order any drugs online without a doctor giving a prescription or faxing one in. You have to get a doctors attention and don't leave until he treats you.
03-27-2013, 12:41 AM   #14
badbelly
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Hi Paul,

That is irresponsible of them if you have Crohn's. Without medication you could be risking another surgery, more scar tissue, more and worse flare ups, etc. Make sure they don't pass you again to some random "specialist". Demand to be referred to a gastroenterologist and if you can, do some research on doctors through yelp etc and get a referral to a good one.
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Crohn's diagnosis Jan '13.
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