Desperate for a diagnosis! Please help!

[hannitab10]

Hi, I am a 24 year old student and have been suffering severe symptoms for the past month. I have been diagnosed with IBS since age of 18 and have always had gastro issues but just put it down to IBS.
Since christmas I have barely been able to keep food down without being sick or having food go straight through me. I had to go to A&E as I was dehydrated and bringing up blood as I was vomiting so much but they just gave me fluids and omeprazole and sent me home again. That was on new years day. I still cannot eat a meal, only really small things otherwise I get the sickness/diarrheah or severe cramps after I eat. I have extreme fatigue and find myself heading to bed around 4pm for a nap, which is so unlike me.
I am going to the toilet 5 plus times a day, often with urgency. I have angular chileitus on my mouth and have lost almost a stone. I also had a similar episode in september of severe sickness and diarrheah and so am wondering if these are flares?
The GP has been less than helpful, bloods came back normal and therefore he has no idea, put it down to IBS and put me on the low fod-map diet, which is pointless as I have no appetite anyway! I am now on omeprazole, prochlorperazine, mebeverine and peppermint capsules.
The more I read, the more I am convinced that I have Crohn's. The Dr said no because the bloods showed little signs of inflammation (though I don't know the exact result) and there is no blood in my stools (though I have read that this depends where abouts the inflammation is in the bowel?).
I have a gastro referreal but not for another month and I am so fed up and desperate now, feel like the GP just brushes it off as IBS.
I am a student nurse and concerned I won't be fit for placement in a couple of weeks.
Please help and let me know if my story sounds similar to yours or what you think it could potentially be? :sign0085:
Thanks in advance
Hannah

 

[DJW]

Hi Hannah and welcome.

I'm sorry your feeling so lousy. It's good you've been referred to a GI specialist.
It is possible this is a flare and will calm down before your placement. As you know it is important to have this investigated before jumping to to many conclusions.

Sending you my support. I hope you feel better soon.

 

[nikki4294]

I am so sorry for your pain. I had a similar situation where I was diagnosed with IBS for probably 2 years before things "changed". Pain was different, bowel habits different, it's like a light switch turned on and it went from IBS to IBD. Hopefully not in your case and it's just IBS flare up. But the only way to tell (that I am aware of) is to do a colonoscopy. Why they let us feel horrible for as long as they do before scheduleing that procedure is beyond me.

 

[nikki4294]

Have you taken your temperature by chance? I remember that I would run a low grade 99F fever. Take temp and see just in case...

 

[UnXmas]

I don't think you should assume Crohn's at this point. Crohn's is one of the most common causes of digestive symptoms, which means it will come up again and again when you search your symptoms online. But there are many, many rarer digestive conditions. You may have Crohn's, but don't speculate about your diagnosis too much; you can only find out what you have by way of medical tests.

However, it's ridiculous for any doctor to say your symptoms are IBS; you clearly do not meet the criteria for IBS.

Unfortunately, on the NHS your waiting time for the consultant is not unusual; if anything, it's shorter than average. You can ask your GP to request an earlier appointment, which with the severity of your problems is not unreasonable, though it will come down to the GP's discretion. Your only other option is to go private, though if you have a private appointment with a consultant, it will probably just mean that you're then put on waiting lists for tests (which will be very, very expensive to have done privately).

Stress the severity of your condition to your GP, or see another GP if your current one is not helping. Report any new symptoms that develop, and report any increase in the severity or frequency of symptoms. These developments can be used as justification for an earlier appointment.

When you went to A&E, how much blood were you bringing up and did the A&E staff see it? A&E is not the place to go for diagnosis. They treat emergencies. If the only immediate problem you had was dehydration, once they'd treated that, there really isn't much more they could do if you weren't exhibiting any signs or symptoms of anything else that could be imminently dangerous.

 

[UnXmas]

I am so sorry for your pain. I had a similar situation where I was diagnosed with IBS for probably 2 years before things "changed". Pain was different, bowel habits different, it's like a light switch turned on and it went from IBS to IBD. Hopefully not in your case and it's just IBS flare up. But the only way to tell (that I am aware of) is to do a colonoscopy. Why they let us feel horrible for as long as they do before scheduleing that procedure is beyond me.

IBS, by its diagnostic criteria, cannot cause unintentional weight loss. It also cannot cause vomiting to the point of bringing up blood. A colonoscopy is one of the main tests used to diagnose Crohn's, but there are several other tests that can be used in addition to colonoscopy. And a colonoscopy can also detect and rule out numerous other conditions.

On the NHS, waiting times are so long because it's ridiculously disorganised, but I would gladly take that and have it continue to be free.

 

[hannitab10]

Thanks for your responses. I am going back to a&e as I feel quite desperate, I cannot eat without vomiting or food going straight through me. I drag myself to uni but have to sit on the edge of the row near the door in case I need to run to the toilet! If I stress the severity in a&e hopefully they will admit me and get the cause asap.
I know I shouldnt make assumptions, perhaps it is not Crohn's but it seems to tick a lot of boxes and when the GP is mot much use you find yourself using dr google

 

[hannitab10]

With response to your question I was vomiting green (bile the doctor said) and then brought up blood, not a huge deal but the doc said it was probably caused by the constant vomiting bursing some blood vessels

 

[Brear]

Good luck Hannah hope you get some answers very quickly!

 

[nikki4294]

differences in medical, unXmas!! But at the end of the day in US, still takes a month for a specialist and a few $$ even with paid insurance. Free is good! My comment of waiting so long was referring to being diagnosed with IBS at age 18 and just dealing with it until age 24 only to fall into more pain. I hear more and more young ladies with a similar story and just worry that we are missing something.

hannitab10, my heart goes out to you, with 6 years of ibs diagnosis and what you are going through now. Please let us know what you find out and feel free to ask any questions you may have, but unXmas and DJW are right, try not to over diagnose just yet. But good for you for educating yourself.

 

[DJW]

I read an article not to long ago (forget where), by a GI doc that the inability to DX quicker is a major issue. Research needs to continue to find faster ways of DX IBD.

This would cut down on the needless suffering so many people endure.

 

[David]

I'm so sorry you're having to go through this I know how tough it can be waiting for that appointment that is so far away. I don't have any great advice but wanted to let you know my thoughts are with you.

*hugs*