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[shrosphirelass]

Hi all, hope everyone is doing well.

Has anyone got any experience of the non site specific symptoms urgent pathway?

Just wondered what the procedure involves.

Alongside the referral the GP has sent me for lots of blood tests and a urine test along with a chest Xray. Already done a FIT test.

No one explained what any of it meant. I have bowel / stomach issues, nausea, fatigue and loss of appetite. Since the FIT test was normal I think they're using this route as I don't meet the criteria for the colorectal pathway (though this is what seems to be my issue).

Thanks

[CLKD]

A worry for U - why medics don't explain I can never understand  . What makes you believe that it's a cancer referral?

MayB ask your GP if there is a recent letter that explains the why's/where4s?  Who referred you?

[bombsh3ll]

I'm sorry you're dealing with this.

This pathway is typically used when someone has non specific symptoms that MAY indicate cancer, such as unexplained weight loss.

The majority fortunately come back with no evidence of cancer, but it is useful to have this option particularly with the high threshold and long wait for obtaining GI investigations.

You would usually expect to get a CT chest abdomen and pelvis in addition to blood tests. They may, based on your symptoms arrange an endoscopy and colonoscopy.

One thing that I would urge you to do now based on your symptoms without waiting is contact your GP practice and make sure you have had a CA125 blood test.

This should have been done but is often overlooked.

[shrosphirelass]

Thanks, I was referred by the advanced nurse practitioner who was really good. She said it was a new pathway where different tests could be done when you didn't fit into an existing pathway. She didn't mention cancer but I saw it on the referral. I'm not worried about that. I just want to find out what's making me feel so bad. It's probably IBS but the overwhelming fatigue and general ill feeling is a bit worrying.

I just didn't know what kind of tests were involved, the time scale and who I would see and where.

I guess they'll let me know.

[Dotty]

Shropshirelass….do you use hrt ?

I had exactly the same symptoms as you…..constant nausea, exhaustion, loss of appetite, stomach problems. I had every blood test going. I had an endoscopy. I was tested for a pituitary tumour  and ovarian cancer and stomach ulcers. All tests came back negative. No one knew what was wrong with me. It turned out that my awful symptoms were caused by low oestrogen.

[CLKD]

   Dotty

[SundayGirl]

Have you also had a faecal calprotectin test (also known as poop on a scoop) to check for any inflammation in your bowels?
Asking as I had similar symptoms including the nausea, bloating and feeling bleugh. After blood tests, fit tests and poop tests it turned out it was food intolerance related.
Hope you get a similar diagnosis 🤞

[Northerngirl]

Shropshirelass, can't really offer any advice on this particular topic but just wanted to say I hope you get seen soon  and not to worry too much....it sounds like this protocol will be very thorough.
This post menopausal journey is an absolute nightmare isn't it!!!! 

[shrosphirelass]

Thanks all,

Dotty yeah I'm on HRT have been for years. Stomach issues improved after I started HRT but I have had issues for the last 6 months with an increase in symptoms / tiredness and constant nausea in the last month.  I think its likely to be IBS, or food intolerance. I'm also very sensitive to hormones, though no changes in HRT for a year.

I have just been told to do a stool sample for a faecal calprotectin test. They've also asked for a  CA125 blood test. My blood tests seem to indicate potential issues with inflammation / infection/  liver, though cant see these causing my symptoms.

Sundaygirl did you work out what foods were causing your problems? I have done a food diary and can't see any patterns / specific triggers.

[Aprilflower]

Thanks all,

Dotty yeah I'm on HRT have been for years. Stomach issues improved after I started HRT but I have had issues for the last 6 months with an increase in symptoms / tiredness and constant nausea in the last month.  I think its likely to be IBS, or food intolerance. I'm also very sensitive to hormones, though no changes in HRT for a year.

I have just been told to do a stool sample for a faecal calprotectin test. They've also asked for a  CA125 blood test. My blood tests seem to indicate potential issues with inflammation / infection/  liver, though cant see these causing my symptoms.

Sundaygirl did you work out what foods were causing your problems? I have done a food diary and can't see any patterns / specific triggers.

I'm thinking celiac, maybe??

[CLKD]

I cut out ultra processed foods: gradually.  3-4 years ago I realised that the mid-morning bun/scone/eclair XX fill in the gap was causing bloating so badly that I was unable to eat for 6-8 hours.  This didn't happen in the day, unless we were out and about.

Gradually we increased more veg to my diet, cutting out all UPF.  Until New Year's Eve 2023/4 - I had been eating stodgy over C.mas which impacted, I thought that I was going to die.  Back to no biscuits, cakes, scones and gut improved.

In November we went away where it was toast and butter for breakfast, not my usual muesli with milk: again I began to feel better - no afternoon bloating. So it's been toast with butter since for b.fast.  Sugars cause my irritating continual clearing of throat, i.e. Coke, chocolate  , peanut butter.  This has been difficult in recent weeks but I am slowly getting there.

I blame age  though in my head I'm 17.   .  I think it's going to be a continual food adjustment for a few years B4 my gut settles, whether my slow transit will improve remains to be seen [not literally  ].

Lunch time is my most difficult meal to make choices for.

Let us know how you get on with the investigations and whether taking note of your total intake: fluids and food: for 5-7 days/nights, would show if U need to cut out anything. 

[SundayGirl]

Hi Shropshire lass 

My main issue is dairy, or to be more exact, lactose. It's a very common issue, especially as we age. For me it causes an intense toothachey pain right in the middle of my abdomen below the belly button. It also causes constipation which is unusual as it usually presents with the opposite, unless I had a lot of dairy then I had diarrhea. Also I was irritable all the time with stomach aches, nausea, feeling bloated all over, increased belly fat, not wanting to eat and when I did eat, not really enjoying it.

I also have issues with a lot of fruit - apples and kiwi fruit in particular. Lots of bloating, gurgling and aching.

I had trouble finding out what was causing my problems as I was only recording my food intake and was totally ignoring the fact that I do like my coffee. I found out accidentally after mentioning it to the GP during an appointment for something else. That's when all the testing started and after a trial of lactose free and three or four calprotectin tests that started really high then decreased rapidly, it was confirmed as lactose intolerance with a probable fructose issue thrown in.

Sorry for the essay but I thought I'd mention my symptoms just in case they may be familiar to you.

[shrosphirelass]

CKLD I know what you means about still feeling young. I used to feel invincible despite any health issues, but this time I just feel sorry for myself!

I haven't eaten meat for 40 years and have a largely plant based diet and cook everything from scratch. I avoid dairy apart from kefir to get a probiotic. I do have an increase in flatulence with beans and pulses but obviously I need to eat these to keep my protein levels at an ok rate.

The coeliac test came back clear.

Sundaygirl, did you observe the lactose intolerance yourself or did they give you any tests, apart from the calprotectin test? I know allergy tests are often seen as unreliable and not recommended.

[SundayGirl]

My diagnosis was on the fact that the calprotectin levels decreased more and more the longer I avoided lactose and the fact that I started to feel much better within a few days. I suppose I'm lucky that my GP was pretty switched on and looked for the simplest explanation first rather than a referral for invasive testing.

I don't think there's an lactose intolerance test as such except for the hydrogen breath test (for SIBO, lactose intolerance and fructose intolerance) that can be done.  My GP didn't refer me as my symptoms were lessening with avoiding dairy and the bloods for CA125 and coeliac had come back negative.

Have you considered a water based kefir or even probiotic capsules? If it's the only dairy based thing you have it's just a thought and could maybe rule out lactose intolerance or make it a possibility. I definitely need to take my probiotics or my digestion gets all weird again with bloating, wind and alternating constipation and diarrhea.
If I have the slightest bit of dairy now I feel sick almost immediately and I'm in agony within a few hours. It's also written into my medical notes that I can't even tolerate lactose containing meds.

I really hope you can get to the bottom of this and it's a simple fix 🤞

[CLKD]

   4 the update.  A few years ago a friend of ours who had been vegetarian for over 40 years, suddenly craved a steak  .  She tried small amounts of meat and after a month felt better, though beef and steak slow my bowel down.  Shows how different we can all be.  She now has meat once a week, usually chicken or a beef joint.

Pulses 4 me are dangerous      .  I've had to cut out baked beans as they bulk my gut up far too quickly = not able to eat for 3-4 hours.  Eggs too, completely out of my diet.  So that several meals of protein that I miss out on.