Awaiting diagnosis and scared

[Mrslwag]

Hi, I’m new here but just looking to put my mind at ease.

Over the last couple of months I’ve had full blood tests and a sample for calprotectin, initially to confirm whether or not I had IBS. I had been taking probiotics which helped for a while and also buscopan but my symptoms started to worsen. Two of my bloods came back, ESR at 47 and CRP at 29, calprotectin at 305. I’m now being referred to gastro for further tests, assuming a colonoscopy? This absolutely terrifies me, both the procedure and the thought of what they might find... can anyone share similar experiences, and how things panned out? I really am so scared, I’m not usually a poorly person so finding all of this difficult to deal with. Also, can anyone tell me what caused them to develop this condition?

Thanks! X

[willow24 Administrator]

Hi,

A faecal calprotectin of over 100 is indicative of inflammatory bowel disease, however your blood results show your inflammatory markers are only very slightly raised.

IBD affects people differently depending on the severity of the disease and genetics ( a recent research paper identified specific genes meant that IBD presented as either mild to severe)

symptoms of IBD during flares are abdo pain, diarrhoea, urgency, bleeding (depending on where in bowel disease is and severity of inflammation) weight loss and fatigue

the gastroenterologist will probaby repeat your blood tests and arrange for a colonoscopy so biopsies can be taken to help confirm diagnosis of IBD. you may also have CT or MRI depending on which NHS trust you are under

A colonoscopy is not painful, it can be a little uncomfortable and embarrassing. They will offer you a mild sedation which means you will be kind of awake for the procedure but you wont remember it. In the room there will be the person performing the procedure, either a gastroenterologist or specialist nurse, plus a nurse who checks your blood pressure, oxygen lebels etc as well as giving you support and reassurance throughout. During the procedure an endoscpe is passed up the rectum into the bowel. Air is added to help with the passing of the endoscope, this feels a bit weird but not painful. When biopsies are taken its like little pinches inside, again its not painful just a strange sensation.

After the procedure you are left to come round from sedation and the nurse will discuss with you what they saw and if they needed to take biopsies. You should also get a sheet explaining what you had done and any initial findings that you can take away with you. You will need someone to collect you as it is not safe to drive after sedation.

If IBD is diagnosed there are many medications that can be tried, and it may take a while to find what suits you

Good luck, and please ask me anything., If you have any questions which you do not wish to share on the forum, I can be messaged privately on health unlocked x

[Mrslwag in reply to willow24]

Thankyou so much!! That’s the first explanation of anything I’ve had! All I was told is that the markers weren’t through the roof, but higher than they’d like and enough to refer me to gastroenterologist. I’m sure my first appointment with them will be going through all of this but you have helped out my mind at rest somewhat until that letter comes through x

[willow24 Administrator in reply to Mrslwag]

so pleased I can help. Let me know how your getting on x

[Mrslwag in reply to willow24]

Hi willow, just thought I’d let you know I got my appointment through today to see the gastroenterologist, not quite sure to expect at this appointment as they’ve just asked me to bring any meds with me and a Urine sample. I’m fed up now, don’t care what I have to go through to get a diagnosis and the right treatment x

[willow24 Administrator in reply to Mrslwag]

Hi, thats a pretty standard letter to any out patient appointment. Dont worry about taking your meds, a repeat prescription form will do, or you can write a list of meds you are taking. They will aso run a urinanlysis to check for any signs of infection.

Hang in there hun x

[CormorantWatcher]

As said above. IBD affects people differently. Not to panic you, I was reasonably successfully treated with drugs for 4 years, but then required surgery. Others I met went through that in 6 months. But hey were the minority: I've met so many more people who've been successfully treated for over 10 years and are considered in remission (of sorts).

Balanced diet, maybe some modifications (I found gluten free worked for me) and things go back to pretty much normal. I was ill for a while, mostly related to surgical complications (not the IBD itself), but now do most things I used to and more. I'm doing a 100 mile cycle ride this weekend and more later this summer. The main thing is to let the docs find out what the issue is to have the best chance of treating it.

Best of luck

[Ceres777 in reply to CormorantWatcher]

Thank you for sharing.Im sorry to ask, but how do you know if you need surgery?

[SORRELHIPPO]

I would just say regardless of what condition you turn out to have, learning to manage the stress and fatigue that go along with lots of tests and a new diagnosis is vital. Stress can make most things worse I know from my own experience with IBD (Crohn's Disease) that stress cycles into fatigue and the Crohn's is then less easy to manage. I feel very strongly that the medical people do not give the time and effort they should into explaining how important it is to find the help needed to support yourself through these moments of life changing tests etc. Some GP practices are good and can point you in the right direction for help. We all need help at times like this, best of all luck to you.

[Ceres777]

What were your symptoms? Sane with me, im still waiting for my test results and im scared.