Positive I've got crohns but keep getting fobbed off

[S_anderson]

I'm new to this forum and would just like some help really. I've been ill for quite some time now with my stomach. I've been passed from pillar to post with my doctors and finally got referred to the hospital, which they have only done a colonoscopy so far which apparently came back fine apart from a bit of inflamation, but I was told that he doesn't know if that was due to the fact I had to take picolax for the bowl prep or if it was something else. I then received a letter 2 weeks later basically saying I'll be happy to know nothing has came back and everything is fine, well to be honest I'm not happy about that at all. I've had constant diarrhea for around 5-6 months now with really bad stomach pains, especially when I eat. I've had to go on the sick at work which is something I didn't really want to do but things got so bad I can't even leave the house now and have to get my sick notes over the phone from the doctors now because I can't make it into the surgery to collect them. I go to the toilet up to 10 times a day and can be on the toilet for hours at a time. I asked my consultant if he thinks it could be crohns and he doesn't seem to think it is, I just have a feeling it is and had to disagree with him. I didn't want him to think I was telling him how to do his job but because this has being going on for so long with no results I felt it was the only thing left. I told him from the start crohns is in the family and with one family member it had taken 5 years to diagnose and I just didn't want to be waiting about that long because I physically can't cope anymore. I even told him every symptom I have is what family members with crohns started out with before they got a diagnosis. It just seems no matter what I do, I just keep getting told nothing had came back from your bloods or stool sample and now a colonoscopy. I'm hoping that he's not going to just point blank says it not crohns and not test for it any further.

I just feel as if I'm fighting a loosing battle and keep getting fobbed off and made to think it's all in my head!
Is there anyone in the same situation or have been?

Thanks !

 

[nogutsnoglory]

I'm sorry you are struggling both physically and to get a diagnosis. We do have an undiagnosed club on here with many others questioning if they have crohns http://www.crohnsforum.com/forumdisplay.php?f=75

I know you are frustrated and maybe it's worth seeking a second opinion. Diarrhea and cramps alone don't necessarily signify crohns. The inflammation in the gut is a bug differentiator. Is it possible you have IBS? have you been put on medication to slow your muscle contractions and to control the diarrhea?

 

[S_anderson]

Thank you for the link.
I got told from day one it's not IBS because my symptoms are worse for it to be ibs and was why my doctor was referring me to the hospital, at first ibs was whist I thought it was and that would be it. Crohns not only was something I thought of because of stuff I'd read but because it's in my family too, and when I went to see my consultant the first time before any tests, he said the symptoms in having it sounds like crohns but because my colonoscopy came back 'fine' all of a sudden crohns didn't seem to be an option anymore.
As to medication the only answer I ever get is 'we can't give you anything because we don't know what it is'
Which obviously doesn't help me in the slightest

 

[Trysha]

There are other tests that should be done before ruling out crohn's and other IBDs.
It might be good for a referral for another opinion.
If you are anywhere near St Mark's hospital in London, ask for a referral to a GI there.
This is a very good hospital for intestinal diseases.
You obviously have problems that need further investigations.
Whereas colonoscopy is a gold standard it may be that your problems lie elsewhere and other investigations should be done.Things like pill cam, enteroscopies etc.
Have you seen the same specialist that has diagnosed crohn's in your family?
If not it might be an idea to also look for one of those docs.
If inflammation showed up on the colonoscopy it should not be brushed off lightly.
It can also vary according to how many biopsies were taken at colonoscopy and how far into the inflammation area.
Be persistent don't give up get more advice.
Feel better soon
Hugs and best wishes
Trysha

 

[nogutsnoglory]

For the stool test did they do a fecal calprotectin? That is a good and easy stool test to use. I understand they think it's too severe to be IBS but it may be worth trying since those meds first to see if they help because they aren't as risky as the crohns meds. If you need the crohns meds they are good but you certainly don't want to be on them if you don't have ibd. I know you have ibd in the family which raises your concern but it doesnt necessarily mean you have that too.

 

[DEmberton]

I don't want to make guesses on your condition, but in my case the colonoscopy didn't prove anything conclusively, but the small bowel CT scan did. According to the GI they can't quite see everywhere with the colonoscopy, hence the scan.

Might be something to suggest to your doctors.

 

[Andy1982]

It was a ct scan that diagnosed me along with blood tests,stool samples,x-rays.
You hear about so many people not getting a proper diagnosis surly at this day and age things should be getting better.