Never ending problems

Oh no it's so frustrating how we are treated as if we are hypochondriacs I really have lost all faith in docs and hospitals. I'm glad you have an appointment on Tuesday I hope you don't get fobbed off again. If we don't have pancreas issues what the hell do we have?! It must be something!

At least you were in and out quite quickly at my hospital Royal Worcester I would of been sitting and waiting all day in a&e for that exact same answer! That's if they even bother to see me!

I called 111 they wanted to send an ambulance. Lol! I refused and they get me an appointment at the out of hours Drs. He wasn't helpful at all! I don't think they know anything! I'm so upset and angry! I'm starving hungry but too scared to eat! This pain is a whole different level to any of the pains I've had before! He said what do you want me to do. I said get rid of my pain!! he said I can't do that. Hold out until your appointment in Tuesday!! Grrrrr!!!! 😡😡 thank you for caring it means a lot x

Oh no they are even worse on 111 I find! Been good when I've taken kids for ear infections etc but anything else they are useless! I hope that you can manage until Tuesday it's so hard with children when your in pain. I hope your hubby is more helpful than my boyfriend! He still goes off to football and leaves me with them saying it's all in my head! Let me know how you get on tues. Xx

yes it must be something.

my pain is low left, ehere i think my ovary is.

in the 4 years i've had this my syptoms have changed.

i'm not the most methodical person so its difficult to say what has worked for me.

you see in my effort to find my problem i've had my theories and acted on them..

i had chronic diarrhea for a couple of years and started taking B supplements.

then chronic indigestion PPI's did nothing.

yeh i've had all the tests.

gynno, digestivo, urology and internal medicine.

i belive all my woes have come from this original pain.

a always have.and cos of no treatment i believe my guts are being comprimised.

in the last few days i've started using pancreatic enzymes and they are helping but the dagger is still in my ovary

but the old macho docs here in spain say no.

I think that sometimes! 😔

hope you are feeling well today please don't give up there is hope. It took 9 years no actually longer.. for them to figure mine and and I still am not recieing help. Keep smiling sweetie.

Don't give up keep going to diffrent Dr's they have to figure this out for you! Wishing you brighter days a head!

Just read what I put. She's referring me to the surgeon about my gallbladder. Lol!

Also please excuse any bad grammar and spelling!

How frustrating Gem. What's your consultant's specialty? When will you hear back about the surgeon? Hope your pain has eased a bit.

Hi Ruthie,

Thank you for your reply. How are you feeling?

My consultant is just plain gastro. I can't afford to pay privately to see anyone else so just have to suffer the NHS! Surgeon should be 8 weeks and the pain management the same.

Can I ask what you take for the pain?

Gem x

I've been waiting 3mths for this pancreatic appointment, it's still a month away. Tbh, I'm beside myself today as pain has spread and I'm also getting severe waves of cramps right across abdo and diarrhoea, this latest symptom is new for me. I take co-codamol as paracetamol doesn't touch it at all. I've got an emergency appoint with GP later today but can't imagine it will get me anywhere.

When my gastro drew a blank I asked him for a second opinion about my pancreas and he agreed and referred me to the pancreatic specialist. Maybe you could push to be referred to one though not every city has a pancreatic unit. Which part of uk are you in? Do you also have loose stools? Have you had your faecal elastase checked? Mine was low and this pointed to pancreas even though scans were clear.

I'm sorry your still suffering I really hope it get more manageable for you at some point. Yes I have loose stools, yellow, undigested food. But my faecal elastase was 460 first time and 470 second time. I'm based in the West Midlands. Coventry is my nearest hospital and I've read they have a great pancreatic cancer specialist but that's it. If I go private I will be seeing the same people

I know how if feels to have an appointment but be waiting which feels like ages for it. It will soon be here for you. Keep thinking positive. I hope it goes ok at the Drs for you today. I hope they can help you.

Gem x

Hi Gem,

​Hope you don't mind me poking in... I think you need a new DR. she is not listening to you . 1st of all I have had CP 15 years and I hurt exacatly wear you are talking about. Just bellow my breast and sternum and into my left side and into my back. Everyone is different. It infuriates me that she is trying to basically sum you up and sterio type people with CP. She should keep running test or suggest someone else to you. You know your body! Why do they refuse to listen CP is hard to diagnose they know this ...... I am so sorry I am sending you hugs and encouragement through the computer!

I am so sorry you are feeling bad! I often have simalar problems with CP it can be embarrasing at times. I wish you well and hope you figure it out soon! Hugs to you!

Hi Manda, you're not poking your nose in the more the merrier! I think I'm gonna start another thread got a lot of questions.

I am angry at what my consultant said. I'm trying just to get on with it but I'm really starting to worry again.

I've had a look for pancreatic specialists but they all seem to be based in the cancer department in Coventry otherwise they are surgeons! I'm gonna see what surgeon I get out with see if I get a pancreas specialist then I guess I can have it out with him. If not I'm gonna. Have to pay to go privately again. But I just don't have the money.

As you say Manda, everyone's symptoms are different. So why treat everyone the same?

I noticed my pants were a little loose, I've just weighed myself. I've lost 3lbs from doing nothing at all

Pain is not great today! But it's all in my head! Lol!

How are you doing today?

Gem

What the f.. do we have that cannot be discovered by any doctor?! What hurts me the most is not even that the doctors are not taking my situation seriously, it is that close people around me do not take it seriously anymore...as all results keep coming back normal.

My pain is not so severe since I started taking enzymes, but it is there every day. My weight however is not going up, and I feel generally fatigued. One option I was researching is SOD type 3.. this could explain the symptoms. Maybe we have some kind of virus/infection...I don't know, these are just desperate guesses :-(

Thank you for your reply dreamy 82.

I agree! I would like to know what the hell is wrong with us all! Sometimes I think is it actually in my head? But the pains are just so real and painful! They've suggested counselling and CBT! I'm feeling very lost at the moment! I'm annoyed and angry! Of course I don't want anything to be wrong with me, especially CP but I need answers! Then i can move on! With no diagnosis people don't believe you and not just Drs, family start to question you and that's the hardest do you mind if I ask what your symptoms are dreamy?

Hi Dreamy, I've wondered about SOD and infections too. I got tested for Lyme Disease as I heard that could affect the pancreas but it came back clear.

I think there simply must be other causes fo pancreatic dysfunction than CP but they just don't know about them yet. I would really like to hear from anyone who has been through all of this and recovered again. I'm like you, I just cannot gain weight, everything goes right through me at the moment.

I hope we all see better days ahead.

It started as pain under right tib (gallbladder location), weight loss and fatigue. Went to the doctor who did blood tests and abd. US and the only thing that showed is low ferritin. He gave me iron pills and sent me home. During the summer, the symptoms worsened: pain started appearing under left tib after I eat and during the night, radiating to my back. Lost more weight (12lbs in total). Went to hospital where they did every possible test (ct, mri, mrcp, eus, gastroscopy and colonoscopy)...all clear! They only haven't done HIDA scan. Still waiting for my biopsy results from colonoscopy since they saw an atrophy on duodenum, and for the results of fæcal elastase. Got Creon as presxription, and I'm in less pain since. However, it is still present, as well as general fatigue.

Hi Gem, well I saw the emergency gp last night. He prescribed Buscapan for the cramps and a much stronger co-codamol but could not throw any more light on the causes. I had a blood test this morning as he wanted to check amylase and liver again (these were normal a month ago). He didn't see any point in going to A&E as he said then just give you pain relief and send you home. So I'm holding tight until my pancreatic appointment on Nov 4. Still have the pancreas pain and these awful new lower gut spasms and diarrhoea.

Is your day any better today?

Gem, awe ty. It's just I have had such a long battle with this it is so frustrating to see other's. Going through what I have and am still going through. I just turned 40 and have been sick a long time. Have you tried seeing an gastrointestinal Dr. Or an endocrinologist also I think the word is herpetologists they all know about the pancreas. It is not just an organ but a gland. So sometimes multiple Dr.s are needed. You can ask as many questions as you like I and I am sure many people here would be glad to answer. As for myself last night was rough I was hurting all of and very nauseated. But I got through it😁it😁thank you for asking! Please keep us informed. Weight loss happens a lot with CP....

I am so sorry you feel bad hugs and good wishes sent your way hang in there.

why are we are all grasping at straws.?

i get the same story whatever medical department i get an appointment with....all clear.

gynno, digestivo, urology, internal medicine.

likewise i've looked on several different subject forums and again the experiences of people suffering from unidentified pain is phenonimal.

(sorry about spelling)

so i've got fibroids but cant convince gynnos that is causing my pain.

but i also have been diagnosed with ascites which is fluid that shouldnt be in my tummy.

i see all the reasons people get this fluid and have terrified myself.

especially as my gp is not at all concerned.

so 4 years down the line i'm still wondering whats up and experimenting.

pancreatic enzymes seems to be helping so how is that.

do you worry that because no action is being taken, that your other organs will suffer and that the time will come when they say sorry its too late.

another idea i had was to get a private laprascopy but if that came back all clear i would be devastated as all my money would be gone, and still in pain.

its a hard life eh.!

 

Chica,

​I have CP and it is suprising how little DR's know about it... I had it 9 years before finally being diagnosed and that is with 6 straight years of testing. Please don't give up there is hope!! big hugs to you and all of you still searching for answers!!

Hi Ruthie,

In sorry you are suffering with no answers I know what it feels like.

Yesterday was better but still no ok. Still in pain. Woke up with pains this morning. Just had smoothie so far but still got pains. Gonna stick to liquids as much as I can today. But with breastfeeding still I still get the hunger with it so that's difficult to ignore I really hope we can all get on top of it soon! xx

Thank you Manda means a lot

Hope you're ok as you can be today xx

It's horrible waking up in pain and having to face the day like that. I keep waking at 5am and can't get back to sleep for pain and anxiety. Just wish I could eat a square meal. How are you keeping weight on? I'm small anyway so it shows straightaway when I lose. Keep drinking water Gem for the milk. You must be tired. Really hope we see an end to these symptoms one day.

I'm almost not waking up anymore, rapidly going downhill, massive pain. Scared!

Why do they leave us like this! I'm in agony today! Paracetamol hasn't touched it at all! And it's normal? My arse it's normal and there's nothing wrong! I feel so sick today too

Thanks Ruthie. I drink a lot of water anyway. It's the one thing I have become good at. I can't take the pain anymore. It's so draining. No matter what I do it has no effect! I don't wanna bother my dr again but I'm so worried about it this time. After my last flare my pains return to my normal pains. This time it's staying as bad as the flare up! xx

I strongly believe I don't have long....if I look at how I was a year ago I was bad but nothing compared to this.....I'm desperate and nobody gives a toss.....dying animals get treated better.

What pain relief do you have Jon? Don't give up. Go to A&E if you have to, keep telling them how bad it is until they listen.

I'm not on anything anymore, nothing helps. I've done A&E 14 times ,they will send me home...

Hold on Jon. Don't give up. This is a bad flare you're having but it could settle back to a manageable level. We can't stop believing for better days. Keep drinking loads of water. Can you get any food at all down, even if it's just soup. I can barely take soup but I've been watering it down a bit.

Jon, I know it's hard, trust me! I've got 3 young kids to look after on top of this! But you have to try and keep positive. Have you seen anyone in pain management?

Thanks Ruthie. That's tough Gem!! I also have 3 young kids that I need to put food on the table for and I cant get to work...It's such a disgrace that we are left like this. I went to another gp last night that basically said if it's CP you're f*cked....He suggested some medication to help try and heal the weakened/sick pancreas (if it is that). I will try it for 3 weeks....I'll let you know the outcome. I'm getting HUGE headaches, neck pain....All I want to do is get fit, go to work and see some freinds...

Hang in there ladies.

Hi Jon, what medications did he give you? Please keep us updated about the improvement/effect of the medications. This is really incredible: take how many we are on this forum having similar issues, take from many countries we are and how many different doctors we have seen all together...and that none of us can get a diagnosis!!!

Cynactil. I started it tonight. I live overseas. Not sure it will do anything...but I'll let you know. I think I need to accept the fact I have CP and that it's going to be a tough, depressing future. There is no experience out there, mainly die to the fact that this is often linked to alcohol abuse. It my case it was ink/solvent contamination over a long period working for one of the biggest companies in the world! Yes I should sue...

I really do not know what could have caused my problems. It could be everything and nothing. I was crazy in my 20s.. like a lot of people. Drinking, smoking...but most of the people I know did the same and they are just fine. I worked in a highly stressful position, and that's when all the problems with my digestion begun. So it could be stress...

It could also be linked to the hormones. In women, hormones can cause problems with gallbladder and we are more prone to SOD.

Or, as my doctor mentioned, the pancreas can be affected by different viruses/infections in the digestive system (present or past): hepatitis, chrons, coeliac, you name it... I have gluten intolerance, but I never got diagnosed as coeliac. I am still waiting for those biopsy results, as they have seen some kind of duodenal atrophy.

These are all guesses however...

Your welcome Gem and I also help you are feeling well today! always around if anyone needs an ear. xx

I think you should re-look / review your nutrition of food intake. There was or still currently something being digested that is causing it, so the body can't heal due to the = the infection is still being fed. 

I will find out your blood type and then look for a herbalist or naturalist for the list of foods designated more in line to your blood type. Just learn that and it makes so much sense. You have to attach it (whatever the inflammed) root problem with everything.

Also, remember that everytime an antibotic prescribed consumed, your good / bad bacteria is removed, leaving your immune status to be depleted providing the root cause to grow more dominant. 

Hope you feel better. 

I would suggest to find out your blood type and then look for a herbalist or naturalist for the list of foods designated more in line to your blood type. Just learn that and it makes so much sense. You have to attack it (whatever the inflammed) root problem is with everything.