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Crohn's Disease Forum » Your Story » Advice needed


08-22-2017, 07:30 AM   #1
Niamh12345
 
Join Date: Aug 2017
Advice needed

Okay so I am new to this so forgive me if I seem ignorant or clueless to some things. I am currently queery crohns disease. It started about two months ago with classic symptoms such as bloating, blood in stool, constipation and diarrheah. This went on for a few weeks I didnt do anything about it just incase it cleared up on its own. I was then admitted to hospital through a&e with sever abdo pain turns out it was a ovarian cyst so unrelated however I mentioned the gastro problems I had been experiencing and bloods and stool samples were taken.

2 weeks later I went to my GP who had the results and said my procaltectin levels in my stool were 311 , anything above 80 is considered raised. My GP perscribed more pain relief and an "urgant referal" to the gastro specialist was made. 24 weeks yes 24 weeks later I was seen by the specialist where I had more stool samples and bloods taken and a rectal examination where he said I had some small hemorides ( I believe these were caused by the months of constipation and not the reason for the blood in stool). He referred for me to have a colonoscopy to examine further as he believed I have crohns.

The waiting time is 4/5 months for the colonoscopy I honestly dont know how im expected to suffer with these symptoms and pain for much longer. I know NHS is busy but it is stressing me out the longer I go undiagnosed. I am 21, female in south Wales with family history of crohns disease. I have lost a stone and a half since Ive been expericing these symptoms. My GP seems reluctant to start me on any medication other than pain relief. I dont know what to do I just want to know either way what is wrong with me.

**sorry for spelling mistakes was pretty frazzled when writing this**
08-22-2017, 07:38 AM   #2
Guerrero
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I understand you dont want to wait 4 months... is there a way you can do it outside NHS paying for it?
Health is a first priority, and you need to know exactly what's going on to find the best treatment option for you and get better.

What kind of pain relief you taking?
08-22-2017, 08:11 AM   #3
ronroush7
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Is there a way that you can ask if there are any cancellations if they can fit you in sooner?
08-22-2017, 09:11 AM   #4
Sophabulous
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Hi there,

I totally understand, I am very much in the same boat at the moment. I asked my GP to refer me to a different hospital and I have my first appointment there next week. I was only referred in July, so much quicker than the 9 month wait for my initial endoscopy at my current hospital!

The hospital I'm currently treated at have put me down for an 'urgent' appointment, it's still a month away and that was a couple of months ago at least. I would definitely ask to go elsewhere, I'm going to be travelling over an hour each way at the new place, but better that than months of waiting and getting worse. If you go downhill there is always A&E too.

Hope you feel better soon x
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Diagnosed severe Crohn's of the Duodenum, Terminal Ilium and Cecum.

Currently taking Azathioprine 100mg, Esomeprazole 40mg, B12 Injections and various supplements. Azathioprine failing so awaiting next steps
08-22-2017, 09:47 AM   #5
Niamh12345
 
Join Date: Aug 2017
Thanks for fast replies. No chance of me paying for it am a full time student at the moment. Will ask for options of other hospitals and cancelations.

Every time I go to doctors I am advised to just take paracetomal, ibeprofin and Tylenol. Half the time they dont touch the sides so I use econac suppositories which I was actually perscribed for my ovarian cyst pain but I find its the only relief I can get. Will be making another GP appointment for effective propper pain relief and to see if I can have my appointment sooner/ elsewhere.

Thanks everyone
08-22-2017, 12:14 PM   #6
Guerrero
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I have always heard ibuprofen should not be used in case of crohn's...
08-22-2017, 12:21 PM   #7
ronroush7
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I have always heard ibuprofen should not be used in case of crohn's...
I have heard not to take aspirin, advil, excedrin,etc. My doctor said Tylenol. All of the others can cause bleeding.

08-22-2017, 01:17 PM   #8
AJM
 
Join Date: Aug 2017
I have heard not to take aspirin, advil, excedrin,etc. My doctor said Tylenol. All of the others can cause bleeding.
There are other avenues for diagnosis. For example, you can have an upper GI X-ray or Barium Enema (not pleasant). You can also have a CT scan or MRI. These are all available options to get a better sense of what is going on. Perhaps ask your GP to refer you for one of these tests? An ultrasound can also be used to show bowel wall thickening. I would take control as soon as you can. The quicker you get treated, the more likely you won't have further complications (if it is IBD). Best of luck.
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