Never ending problems

I'm so sorry Jon!

What and where abouts are your pains? Have you had all the usual scans and tests?

Are you able to eat?

Pain is:

- left side under ribs, sometimes right, also in front between belly button and chest. General abdominal pain

-full on stomach ache which makes me feel I need to go to loo all the time

- hip/groin pain/stiffness

-stiff/sore finger

-exhaustion

This is constant, it's not that it's on and off....

Yes all he tests which are clear. Bloodwork shows liver elevations and inflamation. I did have a liver biopsy last year which was also clear.

How are you feeling Gem?

I can eat yes and still have an appetite..

 

Have they checked your gallbladder? With a HIDA scan? Mine all started with pain on right side with very raised LFTs. They gradually came down. But I still have a fluctuating ALP level. Have you had recent bloods done?

Since my bad attack last week I'm feeling much better. Pain is still there but manageable at the moment. I can eat food. It gives me pain but not as bad as last weeks episode! The omperazole are definitely working this time.

I've got back pain in 2 specfic points on my spine that moves down towards my hip. I've got rib pain front and back, left and right side. Bone/joint pain like you wouldn't believe in my shoulder, collarbone, sternum, ribs all my upper body aches

Just taken my all my pills! Lol! I rattle when I move.

What are you currently taking Jon?

I think it's terrible we get rejected and left! I have to think I'm lucky some times. I've got a pain management referral for next month. And at least I am seeing the surgeon with the potential of reducing my pain a little if I can get my gallbladder removed! We will see!

Sorry to hear you are still going through it Jon. I'm also at the end of my tether today with nearly all the same symptoms as you. It's the fact that IT NEVER GOES AWAY that gets to me. It's been a year now and was coming on before that.

I had bloods done last week which were clear.

Does anything make your pain better or worse? Mine is always worse if I have to sit or stand and is always worse as the day goes on. Are you still able to get up and about sometimes?

Not sure they've checked the gallbladder - the bain is much more left side than right....so much pain in my mid-back!! sharp...

My liver results are still somewhat elevated but I also already had a liver biopsy and it was normal.

Do you ever really get any relief Gem, I mean for a few hours for eg?

Hang in there, and thanks for your message.

 

Hi Jon, when did you have imaging tests done last? When you went to the E&A, did they do only blood work or also a scanner? It would be improbable, but not impossible that you have such severe symptoms and that absolutely nothing is visible on scans. What therapy are you on at the moment?

Blood work whish was clear. Xray of lungs (?) and a echo of my abdomen.

Just some pain killer for now, after eating I get major stabbing mid front which is new.

Sorry you're still suffering Jon.

Are you taking anything for stomach acid? Omperazole etc. it has helped me able to eat without the front stabbing pains.

In regards to your abdominal pains? Can you be more specific of the location?

What pain killers are you taking?

Gem

I am taking a combination of Domperidone and digestive enzymes and it helped release my pain and indigestion greatly

Just Buscopane. No pain killers as such.

The pain is like I imagine a contraction to be (yes ok maybe not as bad ) It is very heavy, very sharp and comes from nowhere, will kick in ease off and then kick in again......can go on for hours! Location is very much central body and get huge back pain too...exhausting.

Seeing a gastro wizz on Wedneday - a professor with a lots of experience. Can't wait!

Hi Jon,

How do it go with the gastro?

I had a few days relatively pain free, then the pain on my right side started up again and then wham! The pain one left side is back angrier than ever so now I'm in pain again, scared to eat etc. I am convinced that my gallbladder is pushing sludge through and causing my pancreas to get inflamed!!

Hope you are doing ok!

Sorry to hear that Gem. Always nice to get a some time without too much pain and then we are soon reminded again....one day it will stay at bay forever! That's how we need to think!

I didn't really progress....they say I'm not in any trouble, that it cannot be my pancreas etc. They will be looking at the images of teh MRI I hasd to see if something wasn't missed, maybe another complication around that area, I'm not one bit convinced. This morning I was woken up my a stabbing pain left side in my back....and in the middle of my abdomen. Doesn't go away.

I'm considering going to Germany to see a pancreatic specialist..running out of options. Take care, hang in there Gem.

My docs have finally agreed they may have missed someting and that they are concerned! It's likely they will go in through Laparoscopy in the next week or 2 I hope! Keeping you posted.

How the hell did that U-turn come about? Lol! I'm glad they've agreed something is going on! What exactly did they say? What are they hoping to find?

Yeah, please keep us/me up to date!

Will be interested to know your outcome!

Gem

By putting pressure on and questioning everything....and basically saying enough is enough....can't keep doing this.

The admit I shouldn't be in this much pain and that indeed CP can easily hide from certain scans. I think it's obvious after all this time that IBS can't be resonsible for ALL the pain I'm in.

I'll keep you posted. Hope you're ok.

It's great they've finally agreed to do something else! What are they hoping to find laprascopic?

Sorry you've had to suffer for so long!

I'm doing ok thanks, still in pain after eating my right sided pain is getting worse each day so I know the left is gonna get worse aswell!

It was time, I suspect they want a look at the pancreas. I ill have more info on the plan early next week.

My right side is also much worse....

Hope you can enjoy the weekend! Take it easy.