3 Month Illness, Cancer, So Scared :(

[s32bauer]

:weep:

This is the first time that I've posted on the forum. It's a rather long post, so I'm not expecting anyone to read through all of it.

Around the end of August, I had a few hours where I felt a little lightheaded and nauseous, but not bad enough to stop me doing my usual. I was due to have an endoscopy on 4th September to investigate a tight sensation I'd had in my throat for about a year. I figured I'd perhaps just got myself worked up about it.

The endoscopy went ahead and they said the only thing of note was a bit of redness, and they gave me Omeprazole. Because of the anxiety I had it done under general anaesthetic. I felt ill for the days after, which I put down to the anaesthetic. Day after day I gradually felt a bit better until the Saturday morning I felt almost back to normal and was able to walk in to town. Then the Saturday afternoon, that all changed.

I felt so light headed and sick that I had to pull over in the car and lay on the back seat. My heart was going and I felt like I was going to pass out. The friends I was with Google the symptoms and said it sounded like a panic attack. I have also had a Petechiae rash and when I called 111 I was told to go to hospital.

Since then, I have never got back to normal. Over three months, so many family days out missed, had to cancel honeymoon twice.

I've had numerous tests, most of which were normal. I'd even started to pay for private tests as I was worried about brain cancer (had headaches at the beginning), it revealed a cyst in my sinus and they requested an urgent ct scan as they were worried it might have been on the bone, but apparently it's not.

I had started to go back to work for a few hours a week after three months off. My gp started me on b12 injections which made me feel much better but not for long.

As I was starting to get so much more positive, I then started to get stomach issues. I paid privately to go to a gastroenterologist and was told that he didn't think there was anything of concern and that it was just my anxiety. I thought this strange as I'd never had a weird stomach for a month before (stomach issues started just over a month ago, whereas the lightheadedness and nausea has been there from the beginning back at start of September).

It started with a dull ache under my left ribs and my back. I had that earlier this year and it just went away. Then it started to go across to under my right rib cage, and now down to my intestines sort of area. I used to go to the toilet once a day but haven't been for a week now. I've lost over three stone since this all started. I was on lansoprazole but have stopped that today.

The gastroenterologist had almost convinced me that it was the anxiety, although I was still scared given he hadn't done any tests.

Then everything got worse.

The doctor had done a faecal calprotectin test which wasn't back by the time I saw the gastroenterologist. I called the doctor and the receptionist told me there was an abnormal result and I had to speak to a doctor. I was told the normal level was below 50, but mine was 436 approximately.

I have been devastated by this. My gp has referred me for an urgent colonoscopy but they have said it might only just be before Christmas.

From what I can see, an elevated result like this is most likely due to cancer, ulcerative colitis or chrones disease. Obviously the cancer is very very bad, but even the other two say how I would have a higher risk of cancer in the future, and very strong possibility I would need surgery at some stage.

I keep hoping that this has been a very long bad dream, and that I'll just wake up. Every hour seems like a week, and knowing how long it's going to take to get tests done, I'm petrified of the test (I'm scared about the prep and being sick, and worried about bleeding and internal injuries which I know are rare), I'm worried if they find something and what it will be, worried about other tests they will need to do, worried they will miss something).

I just try to sleep every time I can so I'm not awake to think about it. I have been offered tablets for the anxiety but in the past they have all made me feel worse for at least a month before kicking in, and I don't want to just mask over it either.

Right now I'm so scared that I have cancer to the point of picturing how I'll be told and what to tell family.

I'm almost inconsolable.

[Potter86]

When i had a calprotectin test mine was also high and i was having constant stomache sounds and constipation and aches in the stomache they made me repeat the test and it came back just in the normal bracket the doc referred me to a gastro doctor but not till next feb just to check me out....i also had an operation on my eyes 3 months ago and was put under general anasthetic and that knocked me for 6 for days and days after maybe even weeks i felt awful.....in the past 6 months i thought i had kidney cancer.bowl cancer.bladder cancer,eye cancer...ive been to se about 5 different doctors who all have said the same thing STRESS AND ANXIETY.....keep the faith

[Liziik]

Hi
Just read through and I have had almost everything you have explained. I'm now on b12 injections have been for about 3 years I also take folic acid as they work hand in hand with each other and the folate helps the b12 to work. I've been on omeprazole and had an endoscopy due to the b12 deficiency to find out if I had something else (which I can't remember what it was called!) and they also noted redness. I had to stop the omeprazole because it depletes the b12 and folate! I have pain under both my ribs they radiate frequently and cause such pain I wonder how I operate sometimes. I've had my stool sample tested mine was high once lower the next time. (Apparently if can fluctuate) I guess what I'm trying to say is you're not the only one who has had these symptoms and it turns out there is nothing wrong. Please don't spend your time worrying (I know easier said then done) but when it turns out it's all ok you will be kicking yourself for letting it get to you. Take everything as it comes and don't worry about the what ifs. Try and be positive ☺

[wilky44]

High calprotectin indicates inflammation in the intestines, that's all. It doesn't mean you have cancer, you've jumped onto the worst possible scenario. It could just be IBD, or even a false positive. Yes, you could have crohns or colitis, or just some inflammation.

You don't specify what other tests have come back ok? Bloods?

[jojo2316]

The most likely explanation is NOT cancer, it is inflammation somewhere in the gut. It could be something as minor as a bacterial infection or it could be as bad as ulcerative colitis.... but cancer is HIGHLY unlikely.

[s32bauer]

So, it's been a while since I posted on here, and the sage is still ongoing.

The colonoscopy was apparently normal for the most part, but some abnormality in the terminal illeium, and a diverticular. I also had internal haemerroids.

I had numerous biopsies come back which were all apparently normal. I also had two further Calprotectin tests done around five weeks apart and both were normal (one was 11 and the other was 19, apparently they need to be under 50).

Another gastroenterologist said that the abnormality in my terminal illeium had been misinterpreted, and was actually something called hyperplasia, which is apparently no cause for concern.

I also had a capsule endoscopy to check my small bowel. This was normal apart from a small erosion in my duodenum, which he thought was more likely caused by excess acid due to stress. But he did a gastroscopy too but he said was normal.

I've still had intermittent bleeding from behind in my stool, which every doctor so far has said that it is from the piles and they can bleed intermittently. It's very hard for me to accept this.

I went back to my GP who also did two 24 hr urine tests which were apparently normal.

She did notice that my heartrate increased considerably when standing, so I'm currently waiting for an appointment at Papworth to investigate whether I may have POTS, which can apparently cause that lightheadedness, nausea and gut problems I experience. But I've had the heartrate thing for as long as I can remember, so I'm not convinced given the sudden start of this back in September last year and the stomach issues in November last year.

I have had diarrhea a few times, and whenever I do I fear something is wrong. I used to go to the toilet every night but since September I go sometimes days without going, and then sometimes loose stool. I've been told this can be overflow or just IBS switching between constipation and diarrhea.

I am scared of it being something like cancer, but also so petrified that it's Crohns. My GP thinks that is unlikely and apparently even if I had gone into remission naturally that my Calprotectin wouldn't normally go back to normal. I'm so convinced this isn't going to come back as low as my last two, and then worry that I'm going to go through the worry of other tests again.

I have put my whole life on hold at present. I've been referred to that community mental health team who spoke to me yesterday and want me to see both a psychologist and psychiatrist, and has changed my referral from routine to urgent.

[nomorepanic]

You must live close to me if you are going to Papworth - I went there when I had the heart attack.


It could just be IBS of course.


Bleeding with bowel movements is normal with piles.

[Thorey]

I hope I can calm people with crohns worries down with my story,

2 years ago, I had gastro issues with loose bowels and constant stomach pain, and to rule out Crohns, I did a calprotectin test, which turned out to be close to 300. Doing a lot of internet research, I found only one explanation - IBD. (Or cancer, but that is an extremely improbable explanation). I considered myself diagnosed already.
However, I had a colonoscopy, and everything looked fine (the doctor also said most ppl checked after positive calprotectin testing did not have ibd). No doctor I talked to thought worry was warranted.

I wasn't convinced, I mean, crohns with clear colonoscopy is a rare thing, but a thing. 2 years have gone by, still some stomach trouble but not a big deal. This last week I went to my physician and asked to make a checkup again. Calprotectin came back only slightly elevated at 79, which doctors said was normal and indicated non-IBD causes.

I also got some more clear data on the predictive value on calprotectin - it's often written about as if it just magically separates IBS from IBD, like above 150 it's definitely IBD, below it's IBS. That's NOT it. The higher the value, the more probable IBD is, but we're talking high values - even at above 1000, the prevalence of IBD is only around 80%. With a value of around 400, IBS is much more likely.

To thread starter - I don't think Crohns could actually go into spontaneous remission to the extent that you have that low levels. If we look at symptoms, IBS can mimick any Crohns symptoms, and express itself in pretty much any way. If my calprotectin levels were that good, I'd definitely consider myself free from serious disease! (which I already do, even though I have occasional intense cramps, loose stool, constipation etc)

Hope this helps someone <3