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[Thumper]

Morning all.

For well over a year now my gastrointestinal system is ruined. Started with acid reflux, then the never ending constipation. I have had a battery of tests, FIT test, gastroscopy, bloods, abdominal CT. Everything comes back as normal except a cyst on my liver (wasn't concerning) and a small kidney stone in my right kidney, so nothing further is done.

3 weeks ago I started to get the familiar bottom right rib pain I usually get when I'm backed up but it was a bit weird as I had been going twice a day and felt my bowels were actually ok except for bloating that had me looking pregnant. So I started the Lactulose. However it's done nothing except give me terrible wind.

Saw my GP who said the pain is where the gallbladder is but as I had a clear CT (Sept last year) then it's unlikely to be gallbladder issues, kidney stone would be sharp pain and move and to take paracetamol as it's probably costochondritis. Even cocodamol won't touch this gnawing pain.

I did my own experiment and last night and had a meal high in saturated fat (McDonalds), a milkshake, cheesecake and a glass of wine. The pain didn't get worse which I believe it would do if it was gallbladder.

The pain is under the lower right rib, wraps into the back, the rib is tender to touch all the way around particularly 1 bit in the back. I do have pain in my right flank around the hepatic flexure area but the pain has also now spread to my right hip and down the front of my right thigh.

I've had a nosey on here for gallbladder issues but it doesn't seem to fit as the pain is constant, not in waves and doesn't get worse after eating or drinking.

Any thoughts you lovely lot as it's really getting quite unbearable day in, day out x

[MrsMitch]

Hello Thumper, when my husband had gallstones pain we found out quite a few things about what could cause the pain. The GP mentioned that pancreas pain is the same & doesn't come in waves, so pancreatitis was mentioned. He did mention that doesn't always flare up after certain foods & the pain is obviously in the same area. He also said certain scans don't always show up the problem - but you may have had a blood test that covered that.
Diclofenic (I think that's how you spell it) suppositories apparently are about the best to ease the pain. Prior to diagnosis my husband was given these on A&E visits when he was in agony but no one knew what was causing it. Once gallstones were diagnosed as the cause he had those regularly until surgery.
His dad had pancreas issues & his pain was identical but again didn't come in waves but was constant.
Don't know if that will help because you may have already had that checked as a matter of course.

[jaypo]

Have you had a colonoscopy?

[Thumper]

Thank you for the replies both. Things took a dramatic turn Saturday morning. I went to the loo in the morning and I had the most crippling pain in my mid back and ribs (right side), I'm really embarrassed to say I screamed the house down, threw up then blacked out. OH took me straight to A&E where I was still crying and shouting in pain, it was the most unbearable pain ever. Before I even had the Oramorph it started to ease off. It's back to the constant dull ache now. 

Blood tests were normal so they sent me home with Diclofenac Suppositories. They couldn't offer me any potential cause except ask me if I had visited A&E for opioids before (my anger couldn't take that). I tried to push for an answer but they stated as I had a recent scan they wouldn't risk the radiation. The scan was May (abdominal) and showed a small 2mm kidney stone (on the right). I'm assuming if that huge wave of pain was the kidney stone then it would be gone now and not back to the constant deep pain.

My father passed away young from pancreatic cancer which was misdiagnosed as angina, so the above post has me a little concerned.

I had a colonoscopy back in 2020 (pre-pandemic) which showed mild diverticulitis.

I'm going to pay to see an Osteopath this coming Thursday because at least I could potentially rule out any bone, ligament or muscle issues.

Next doctor appointment isn't until 19th September so it's a long old wait of no idea but suffering.

[MrsMitch]

I'm sorry to hear how things went for you. My hubby had similar a few years back - post gall bladder removal. I ended up calling an ambulance (back when they came out) & as the paramedic was walking in the house, he heard my husband yelling in pain & said 'kidney stones'. His pain had also been on the same side as when he had gall stones & had grumbled for about a week beforehand.
After getting various pain meds in A&E it began to calm down & we were sent home with no diagnosis with him off his face on a cocktail of drugs.
We saw the GP a day or so later as the pain was still grumbling. GP thought possibly muscle pain but still no diagnosis & things gradually returned to normal. In the end no idea what it was & no problems since. It does sound very much like your experience but unfortunately we never knew what it was.
I hope you can get to the bottom of it & before too long, too. It's a dreadful state to be in. Wishing you all the best, let us know how you get on at the osteopath.

[jaypo]

My mum had that pain too, she was a very stoic woman,so to see her scream in pain like she did was very scary, they dissolved her stones and she passed them .
I have diverticulitis also,just recovered from a flare up and a dose of ABs it can be painful but not like the pain you are describing,it's more a left sided pain but can radiate to other parts. Ask to speak to your GP again.
My dad also had pancreatic cancer,so it's a worry for me too but they can do a yearly blood test for it,or at least include it in any blood tests if you ask them

[Thumper]

Thank you both! My last round of blood tests from the GP came back as normal and some borderline but nothing concerning. I actually got the email today as my Osteopath wants to view them. I noticed they did do a Ca19-9 blood test which is used as an indicator for pancreatic cancer, it was totally normal at 4. Now I do know that this can still happen with Pancreatic cancer because my Dad's bloods were fine, he had a CT and MRI which were also fine. It was only when he turned yellow overnight he got diagnosed and only lived 5 days after that as it had already spread to his lungs and liver. I was only 19 when he passed and it shook me a lot, hence it is a real concern of mine.

I have a lot of gastric issues already hence it's hard to differentiate. I managed to book a follow up with my upper GI surgeon, I was so lucky as I a) found the letter and b) they had forgotten to take me off the patient led follow up list so they've honoured it. I have to wait until November though!!

Not knowing is the worst thing. It took me 8 years to get diagnosed with M.E, 4 years to get a GP to listen to me about peri menopause and now this, there's never been any real rush or concern in my life from medial people so my lack of trust is a thing.

Oh and full disclosure my Mum died young from Breast Cancer with full body mets, that was diagnosed as anxiety. I never had the BRAC gene testing as I didn't want that kind of stress in my life. I suppose now I'm heading towards my parents "death date" it's playing on my mind!

[jaypo]

Gee we must've been separated at birth,my mum too had BC and had a mastectomy, I also decided against the BRAC test,my sister did it though,didn't ask the outcome,she passed a few year's ago but didn't have BC. The reason they found my dad had pancreatic cancer was post mortem but it was a blood clot that killed him,apparently one of the symptoms of PC .
 No much wonder health anxiety gets us 🙄

[Uma17]

Might be wild but did you ever got diagnosed with endometriosis or fibroids? I had endo and lots of fibroids and had a lot of all over stomach pains including under my right rib and sometimes went up to my shoulder. Nothing could be seen in scan but when I had a laparoscopy for endo, I woke up with pain under my rib where they found and removed endo lesions on my diaphragm. The fibroids caused me a lot of issues too, bloating, constipation, pains. Didn’t quite realise how bad it was until after my hysterectomy.

[MrsMitch]

My husband thinks in a similar way, Thumper, because of his dad's pancreatic cancer. He has what seems to be like a repetitive strain on muscles all down his side. He can go months with no pain & then work seems to aggregate them & they flare up. He also has digestive issues that flare up from time to time & with that & his side I know his first thought is the fact his dad had the same symptoms prior to his cancer diagnosis. We never got to the bottom of his digestive issues but as both have been going on for over 10 years I doesn't appear to be anything sinister. It does seem to be the first thing we think about when we have some symptoms that were suffered by a loved one who then passed away. I do it every time I get horrendous lower intestine spasms - my thoughts go to my mum who died from a perforated bowel. I always wonder 'is this it, do I have the same as her'.
It's good you've got your appointment in November but a bit of a wait for you. It does seen to be normal with a lot of things these days in that it takes so long to get diagnosis & treatment, more so with certain things such as menopause & ME. Did they send you home with some diclofenic?  Maybe using them for a while might help?

[Thumper]

Jaypo, I'm so sorry, it's horrible isn't it, very traumatic and I don't like how medical professionals say it's Health Anxiety or Hypochondria, I think it's totally normal to have fear surrounding it, I doubt they would say someone has an over the top form of anxiety surrounding transport if they were in a car accident, it's the same thing though, it's trauma so of course you are affected, I'd be more concerned if someone wasn't!

Uma, I have had cysts on my ovaries on and off since my early 20s so I've always been on either Depo or like now the pill without a break, so I don't have periods hence can't keep track of them. I know that the pill also affects your hormone blood test results. Mine are still "normal" so my GP says I'm not in peri menopause.  Is there any test that picks up fibroids or endo? I've had an abdominal CT scan which was normal.

MrsMitch, goodness I'm so sorry about your husbands Dad and your Mum too, heartbreaking. Like I said to Jaypo I think it would actually be quite abnormal for someone to not be bothered by a very traumatic health event in their family. I lost my ex to a sudden cardiac arrest in 2019, I was on the phone to him when it happened. I don't worry about that because I can rationalise it and at least heart tests are quite definitive. It's when we know something is very wrong but we don't know what it is, that's the problem.

The nurse I saw for blood tests today said she wouldn't repeat them as anything out of the ordinary would've already showed in June in my last lot. So I'm not sure why my GP requested more bloods. In the end she re-did my liver bloods as that's where my pain is. I'm sure they'll be normal Lol

I have a lovely new symptom today as well, I had a terrible night of not sleeping as I felt like I was suffocating with a heavy chest and throat, woke up with dreadful sinus pressure and a horrible smell in my nose, pretty sure that's from the acid reflux that is out of control. Even the Omeprazole and Pepcid is doing nothing for that anymore! It never rains eh!

[jaypo]

Oh dear Thumper,what a carry on you're having. Ha, I too suffer reflux and the Dr gave me 40mg omeprazole,usually it's 20mg they prescribe, I don't take it daily because of the long term side effects but one capsule when I feel it coming on and it's gone,so maybe ask for the higher strength one?
My dad was my age when he passed away (62) so yes,it's always a worry, the BC side of things,we'll,my mum,her sister and their mother all had mastectomies,so I agree,it's not really health anxiety,just a very normal worry.
Good luck with your bloods,please let us know ❣️

[MrsMitch]

Again, hubby had the same with an awful smell in his nose when his digestive system or whatever bit was malfunctioning. He had esomeprazole initially but the GP said the long term effects aren't good so then prescribed omeprazole but neither worked. Only apple cider vinegar did. I do feel for you because his still flares up & is still undiagnosed.
I think the only way to diagnose endo is laparoscopy as Uma said. Mine was never diagnosed but when I had a TVS years ago I was told the signs of it were there,  so maybe possible with a scan.
The GP who we saw the day after our A&E visit with hubby told him worrying about having something a loved one died of is completely normal - she said she often did it! She said we always think the worst as we get older because weve experience more bereavements. But she was the only one. It is normal.

[Thumper]

Thanks again Jaypo and Mrs Mitch.

Well the updates so far are..... 20+ weeks wait for the ultrasound. As my blood tests are normal it's not urgent and classed as routine. I tried to get it expedited and it's a firm nope even with the new symptoms.

New symptoms..... I now for the first time in my life (excluding norovirus) have explosive diarrhea. My 💩 is also now very light coloured, like a pale grey with a yellow tinge.

Pain is still very much present driving me to the brink of god knows what.

Absolutely convinced I am dying of PC just like my Dad and being ignored. I wish my brain came with an off switch.

I had my private osteopath appointment today, aside from a tight hip muscle and back pain from holding myself to protect from the right side pain my spine, muscles, ligaments and tendons are all ok. She is also 100% certain it's liver, pancreas, gallbladder.

Answers on a postcard, is this what the British now have to do, suffer and die quietly in a corner? 😞

[jaypo]

I'm sure SOMETHING would've shown in your bloods if there was anything major thumper, sorry if you've already said but did you get the pancreas tested in the bloods?