Awaiting Diagnosis - SO scared

[Jen8]

Hi Everyone,

For as long as I remember I have had what I would describe as a "funny tummy". Often bloated and a bit uncomfortable but I would never say painful and it has always been put down to IBS.

A few months back I developed an anal fissure but I had been constipated do assumed it was that. When it didn't heal I went to my doctors and explained the situation and he said he thought it was ibs but just to make sure he would do blood tests and stool sample. However, I received a letter saying my stool sample showed a possible inflamed bowel and he has made me an appointment at the hospital GI department for 2 weeks time.

I'm now absolutely petrified and have convinced myself I have and IBD of some sort. My only symptoms are this fissure, constipation (I very rarely get diarrhoea unless I take something to help with the constipation) and a bloated uncomfortable stomach. I would never describe it as painful. Does that sound like an IBD? Would my GP just send me to the GI if my calprotectin was slightly higher to rule it out? I feel very on my own and as though this has all just been dumped on me with no guidance or help and everything I ready scares me a little bit more.

Any help would be so greatly appreciated

 

[If*]

Hello, the un knowing can be scary, try to hang tight for the test and to get the results. (Of course get help if new symptoms or existing symptoms get worse via Dr. ER or A&E).
Without the test ~ most often the Dr.s can't really tell. IBD can share many common symptoms but each person can vary a lot.

This is a really nice site, with a lot of personal experience, support, and friendly people with much in common. Have you taken a poke about?

Welcome

 

[DJW]

Hi and welcome.

Try and take it one day at a time. See what the tests reveal. As 'If' said, if things get worse, get help.

Sending you my support.

 

[Jen8]

Thank you for your replies

I got my test result back and my calprotectin level was 74, still a bit high but from the research I've done it's a borderline result so I'm still hopefull.

Just counting down the days until my GI appointment now as I feel I could explode with all the questions I have.

This forum has been really helpful and everyone seems so nice & supportive, I've really appreciated looking at everything on here xx

 

[Borg]

As you say, 74 is a borderline result. Borderline is typically considered as being between 50 and 100 mg/g, but I've seen people suggesting that that be upped to 150.

For example:
"At 50 mg/g the sensitivity of the test for organic disease was 82%, and the specificity was 77%, with negative predictive value (NPV) and positive predictive value (PPV) of 98% and 28%, respectively. A cut-off increase to 150 mg/g reduced the NPV by 1% whilst increasing the PPV to 71%."

What that's saying is that your value of 74 has questionable ability to report inflammation, and using 50 as a cut-off will make a fair few false positives (but results of over 150 is very accurate).

So you're still in a position of not knowing (which is stressful in itself) until further things are done. I have heard of borderline calprotectin cases just leaving it a bit and retesting the calprotectin.

 

[valvo33]

hello there
could be crohns disease I had a fellow work collegue who had the same symptoms as you ( had a fistulae which vented out through another part of his bottom rather than his anus ) in my case the crohns was completely different diorhea surgical removal of part of my intestine etc
but he seems to be cured or at least pallated by medication ( pentasa I think )

you just have to trust your docs, in my case it was about 10 years after the initial symptoms that I was finally diagnosed despite having constant dioreha

Thankfully in the UK we have the National health service otherwise I would probably be bankrupt

regards

Stevie