All symptoms of Crohns but still not diagnosed.

[Matthewm1989]

Hi I have been suffering with abdominal pain now and diarrhoea for over 9 months, my symptoms started really bad and I was in constant agony for over two weeks and could not keep of the toilet, near to the end of the second week I was rushed into hospital where I was put on a drip as I was dehydrated. The next day I was discharged from hospital with the doctor telling me I had a "viral infection". Since this my symptoms are getting alot worse which has resulted in me being of work as I'm in so much pain, I've been back to the doctors on numerous occasions where finally I was referred for a colonoscopy, I got the results of this a week later which show I had a cobblestone appearance of the terminal ileum my consultant suggested this was crohns, one week later I was admitted to hospital again as I had blood in my stool and severe abdominal pain, I was in hospital for a total of one week with no diagnosis no answer to the cobblestone appearance to my terminal ileum and was simply discharged, I'm currently awaiting to see a specialist in this field, also my other symptoms are really painful mouth ulcers, constantly tired, vomiting, passing out and a severe rash on my back which gets worse with the more pain I'm in. Each doctor I have seen has said it sounds like crohns but it just seems so difficult to be diagnosed could anyone please give there opinion thank you

 

[Matthewm1989]

Also two biopsies where taken but from the caecum which is not the effected area the affected area is the terminal ileum

 

[Tigerpants44]

Hi Matthew

I've recently been diagnosed after 10 years of problems. I'm afarid to say you have to push this with your GP and I would think the next process is a Barium X ray. If you have Crohns you should chase up the consultant and GP for recommended medication.

Its really hard because you feel like s**t most of the time but you are the only one that will be fighting your corner......i know this from my own experience. Keep pestering them until they get so tired of you they do the jobs properly and get you sorted!

Keep strong and keep pestering them.......most GPs are lazy or don't understand and write any bowel problems off to a virus or gastro enteritis and we both know thats not true.

My affected area is the terminal ileum the same as you, you really should be offered the barium xray and they then should recommend meds to control the disease. I'm at the start of trying mine so I'm a little way ahead of you.

Keep me posted as to how you get on and remember its your life and you have the right to get proper care!

Wishing you health and happiness

 

[littlemissh]

Hello Matthew and welcome,
Sounds like you have had an ordeal. I always find it odd they didn't get a gastro doctor to see people whilst in hospital to speed up diagnosis and treatment. Have they said why they didn't biopsy the cobblestoned area, seems a bit odd they didn't.

Have they started you on any meds yet. If not and you have a long wait for your appointment and having lots of synmptoms your gp could contact the gastro doc to ask for meds whilst you wait and a sooner appointment.

Docs do seem very anxious about diagnosis, which I suppose is fair enough to a point as some of the meds are heavyweight. Also some infections can cause terminal ileum ulcers etc. But they do drag their feet sometimes when they are not the one suffering.

Hope things get sorted soon.

 

[Matthewm1989]

Hi firstly thankyou for both of your replies, I actually did have a barium x-ray whilst I was in hospital and the test came back as inconclusive, it just seems like every doctor is fine in saying all of my symptoms point to crohns but not one of them is willing to diagnose me with it. They have put me on some mess called mebeverine which is only there for when I get a flare up not to stop them from happening. Thanks again for your replies and I hope your mess work for you Tigerpants44

 

[Matthewm1989]

Meds*

 

[Matthewm1989]

Also littlemissh no they have not said why they took the biopsies from the wrong place it was only by chance that I found it by looking over my colonoscopy reports yesterday and asked my doctor about it today who could not understand why they had done it

 

[littlemissh]

Mebeverine is an antispasmodic, usually a treatment for IBS rather than IBD...it does nothing for inflammation.
When do you see your Gastro doc?

 

[Matthewm1989]

Yes this is what the doc told me I have not yet been put on anything to stop the day to day pain

 

[David]

I'm sorry you've been going through so much and nobody is willing to stand up and give you a diagnosis. I guess if they're not sure though, it's best that they wait for more tests to avoid misdiagnosis. It's a double edge sword I reckon.

Anyway, I'm glad you joined us here Keep us updated and best of luck to you

 

[Matthewm1989]

Thanks David I know what you meen it's just every doc is suggesting crohns saying that's all my symptoms relate to that but just none of them are giving me a answer it's so annoying

 

[archie]

Hiya, hang in there, they like to have a string of tests and then eventually you'll get diagnosed and on the right treatment plan..it does unfortunately sound like crohn's from what you've said though.

I had a string of tests last year and my GI was so cautious he wouldn't even fully commit to it even after a perforated bowel!!! eventually he said it was after a colonoscopy then it was 100% confirmed after surgery (hopefully you don't need to go down that route for a diagnosis) but what i'm trying to say is it seems usual to take ages... good luck

 

[Matthewm1989]

Hi Archie thanks for your reply, yes I've spoke to alot of people who have crohns and they all seem to suggest it is crohns, it's just a worry when they don't give you any answers and I'm sure you where the same, I hope your crohns is under control now

 

[archie]

I lived in denial last year but after my 1st CT at the very beginning the radiologist suggested crohns so I just took it from him that it was, I'm quite laid back in personality which helped!!! I was given pentasa at the beginning and eventually pred for 6 months. I had to have a resection in the end which has lead me into remission and no meds. I hope u get sorted v soon

 

[Matthewm1989]

Thanks and i Hope all goes well for you, Does your crohns affect your social life as Im in either constant pain or very tired

 

[allieinwonder]

Hi Matthew, welcome to the club!

I'm sorry you are suffering so much. I unfortunately am in the same boat as you. i have been suffering for 7 years, severely for 15 months. I have had doctors keep me from my diagnosis as well. It sucks! Just keep going, and don't give up. Patience is key!

We have a undiagnosed club you are welcome to come join. Its under the support section. There are a ton of us here that are waiting to finally figure out whats going on with our bodies!

 

[archie]

Hi Matthew yes it did affect my social life I was so tired which was overwhelming I was in moderate pain and I couldn't drink alcohol. I'm now back to normal but occasionally I still get a painful tum and tiredness at times but nothing compared to last year before I was diagnosed and I currently don't have active crohns.