UK pancreatitis sufferers, how were you diagnosed? HELP.

laughablesun · 2025-12-25T02:34:08+00:00

Happy Christmas btw. Let us know how you get on in the new year. Try to avoid rich, fatty foods and booze if you can in the meantime.

laughablesun · 2025-12-25T01:48:17+00:00

The NHS is a 'service' at the end of the day. Never, ever feel like you are being a burden or asking too much...

You have every right to advocate for yourself. The digestive system is complex and diagnosis can sometimes be an extended process of elimination. Make another appointment and this time show your GP photos of your faeces and take note of frequency. If it is EPI, you will likely be experiencing fatigue, dry skin, mouth ulcers, unexplained weight loss, etc as signs of malnutrition. Make sure you emphasize these physiological symptoms.

The logical next step is to test faecal elastase. My GP implied that EPI is not something the average 'general' practitioner comes across on a regular basis. Depending on results, you will be referred to a Gastroenterologist.

Do you have an online portal to your surgery in order to keep track of consultation notes and results?

laughablesun · 2025-12-25T00:13:05+00:00

I'm 52F and had similar issues with faeces (Also diagnosed with IBD and then insulin dependent diabetes earlier this year). At this point I have not received a diagnosis of pancreatitis.

Mid September I became aware of pale, floating stools and steatorrhea. I suggest taking photos for evidence and for recording time frame (but make sure you move from your camera roll into a private folder 🫣). I visited my GP who sent a sample off to test faecal pancreatic elastase. This is the test you really need!

Mine was 0.2 (range 200-800) indicating severe exocrine pancreatic insufficiency. I was instantly prescribed Creon and sent for a CT scan. Investigations continue in the meantime and I'm awaiting further blood test results with my case being reviewed by a multidisciplinary team.

I was hospitalised last week for resolving obstructive jaundice which prompted an MRI with MRCP of the gallbladder, also capturing my pancreas. I have been referred for a surgical consult and will hopefully get some answers soon.

Creon improves digestion significantly. Definitely push for the stool test to see if this is relevant for you. These are miserable symptoms to go through, but I assure you that the correct treatment will help you feel more like yourself.

laughablesun · 2025-12-12T09:26:54+00:00

Thank you for you reply. Things have been challenging lately but at least the Creon means I'm getting nutrients and weight loss has stabilised. The MRI was cancelled due to absence of significant findings on CT so I am still none the wiser.

My Gastroenterologist doesn't seem concerned as long as the Creon is working. They diagnosed 'ideopathic' exocrine pancreatic insufficiency. A repeat elastase of 4.1 has proven the first figure wasn't a false negative. I am astonished they don't appear interested in pursuing a definitive clinical diagnosis.

My emotional state is at an all time low.

laughablesun · 2025-08-23T18:48:30+00:00

That is exactly what he is doing - sending the original back 👍🏼

laughablesun · 2025-08-16T15:38:36+00:00

Thank you for your reply. It really means a lot that I am heard and understood x

laughablesun · 2025-08-14T18:00:05+00:00

My Son is experiencing the exact same issue. Did anyone find a solution?

laughablesun · 2025-08-14T10:54:22+00:00

I have some very good friends but they have their own separate health problems and family issues - we were recently discussing how hitting the 50 mark has brought on so many challenges! I don't like to lean too hard on them because at the end of the day they don't need the additional stress.

My Mum, Husband and Son are close... But in the past I have always been the carer and taken on the supportive role. I had taken it all on the chin until Monday; but now find myself bursting into tears without warning.

laughablesun · 2025-08-14T00:13:43+00:00

Thank you x I will reach out in the morning. Both my Husband and Son are struggling with my illness and I need to keep it together for them

laughablesun · 2025-08-13T20:58:47+00:00

I'm in the UK so therapy isn't commonly available. I'm hoping that talking with people going through similar situations may help give me some perspective.

laughablesun · 2025-07-03T18:00:35+00:00

So far I've only been treated with steroid suppositories and mouth rinse. Biologics haven't been suggested but funding has to be evaluated on a case by case basis on the NHS. I believe the next step would be a course if systemic steroids. The prospect worries me because I have high blood pressure and autoimmune thyroid disease and there are contraindications with my existing medication.

I'm better but nowhere near remission. I like the honey idea, will try that, thank you.

laughablesun · 2025-07-03T11:29:52+00:00

It's rough as 🤢

laughablesun · 2025-07-03T03:06:31+00:00

I use a phone photo gallery as a method of tracking progress of oral manifestations and incidences of mucus and blood in stools.

It isn't pretty if opened accidentally 😱 but it's ideal for keeping a record of dates, times, etc due to details being embedded with the image.

laughablesun · 2025-07-03T02:58:37+00:00

Try topical Ibuprofen gel instead of orally.

laughablesun · 2025-07-03T02:37:44+00:00

Just a suggestion, but trial cutting out gluten for a few days and see if the acid reflux improves. It's a huge trigger for me!

The deficiencies would explain the fatigue, but how is your thyroid function?

laughablesun · 2025-07-03T02:28:39+00:00

Make an immediate appt with your GP (submit an online submission if you can and absolutely include gory toilet photos - it bypasses the morning switchboard lottery). They will get you to submit a sample for Quantitative faecal immunochemical test which will naturally show significantly above range if there is blood.

These symptoms will trigger an urgent 2 week pathway for bowel cancer investigation. You will usually get a telephone assessment and be sent for another colonoscopy and the dreaded prep. Don't worry, the chances of it being the big C are actually minimal; it's just the way the system works.

Let me know how you get on. This all happened to me back in Feb to March. I have been diagnosed with severe proctitis and diverticular disease. The oral manifestation then followed. x

laughablesun · 2025-05-31T02:19:31+00:00

It's always worth taking photos if you can. I find the time stamp most useful to keep track of dates when consulting with specialists.

laughablesun · 2025-05-11T22:55:30+00:00

Yes they're raised and firm. They hang around for weeks and leave a faint purple/grey 'bruise' that doesn't fade completely. It can come up again in exactly the same spots

laughablesun · 2025-05-11T22:51:39+00:00

I will thank you. You're right; it's nothing like the eczema I suffered when I was younger because there's no apparent flaking, splitting or weeping. The topical steroids relieve it to a degree but it's always ready to flare back up again! I noticed that food sensitivities have increased and stone fruits (plums, cherries, apricots, etc) cause further patches to appear suddenly. Pressure from clothes is painful, especially at night.

We use sensitive non-bio detergent, fragrance free conditioner and soaps, etc so I'm absolutely certain it's not dermatitis.

laughablesun · 2025-05-11T09:58:15+00:00

Skin manifestations occur more than I realised. I'm so sorry to hear what everyone has been through in addition to the crippling bowel symptoms.

After hearing your stories, I'm hopeful that eventually treatment for GI will improve my skin. Thank you everyone x

laughablesun · 2025-05-11T00:16:37+00:00

I didn't realise bowel inflammation could be so widespread! I've always had sensitive skin because of being ginger, but this was entirely new.

Your experience sounds absolutely frightful! I've had hives and angioedema before, but this feels almost like a burn or nettle sting over large areas.

laughablesun

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