Still here and in excruciating pain

[Jahida]

Well it has been nearly 6 months since that dreaded abdominal pain had started. I'm quite annoyed because when the consultant arranged an MRI he didn't bother looking at the pancreas even though I had mentioned if it could be that. Well, now they want a CT scan to check the pancreas. What I don't understand is they spend the money to arrange an MRI so why not take the opportunity to check everything possible that could be causing it?

I can't even explain in words how bad the pain is. When it starts, I feel like blacking out so I Dont have to feel this pain. I feel like actually dying and wish my life would end. I have a high pain threshold but this is on some other level. I've gone through childbirth, I've had a c-section and an infection along with it and then I've had a transplant and believe me, the pain is worse than that.

My GP arranged for me to see a gastro and he just had a look at the MRI from my liver consultant and discharged me from his care. I received the letter today and I was upset. I felt like I was left stranded and told to deal with this pain. There are a million reasons why I'm having this pain and he just looked at the MRI when there was no report about my pancreas and left me on my own. Awkwardly I have an appointment with him via BUPA as my liver consultant suspected h.pylori but guess what? No where do they carry a stool test and the breath test would be negative as I take lanzaprazole anyway. So I had to arrange a private biopsy. This is what I mean, the gastro doctor didn't even wonder whether it could be this bacteria.

The last time the liver consultant looked at me like I was some freak. He asked if I'm worried and depressed? Of course I am depressed. I've gone past worrying, I don't care if they say there's something serious wrong with me because at least there will be a reason to why I'm in this pain. He then went onto say I'm anxious. I remember this was the diagnosis I had when I was going through liver failure. I was apparently having a break down when deep down I knew I was really poorly and there was a cause.

I went to Disneyland Paris for a break with my children. One of the days I was in agony. I was vomiting and had loose stool at the park. I was actually crying! But i managed to hang on and let my kids have fun.

I do know when I eat egg that I get this pain and along with it I get diarrhoea and vomiting. And so I have stopped eating egg products and cut the milk out but I still get this pain. I hardly eat out anymore or even go out much because of the pain. I have limited my diet and to be honest I'm developing a phobia with food almost.

I wish they would know how I am dying inside in pain. I'm not so good at crying to the doctors but the last appointment after seeing my consultant I saw the mental health nurse and explained to her and cried. She said it does not sound like anxiety pain and was quite angry and wrote a letter to the consultant who then arranged a ct scan.

What shocks me is if I didn't have bupa I'd have been left stranded. I'd have no one to perform this biopsy to check for the bacteria.

I was given amitriptylene and that's doing nothing for me. I've been on it for about 2 weeks and it has given me dry mouth.

I just feel I'll be living the remainder of my life in pain and quite miserable to be honest.

I just needed to have a rant as I've got no one to speak to. I have two little children and I'm constantly snappy with them because of the pain. I have no patience to do anything with them either.

Thank you

[Millie09]

Oh i am so so sorry to hear what you are going through, I can feel your pain and desperation .I know only myself how frustrating it can be when we want answers yet we still have to go through further tests 😒..you need to persevere and push and push to get things investigated faster. I had the I.pylori test where I had to take a radiation capsule and blow in to a big silver balloon, I was told weeks before in the letter to stop taking my lanzoprazol. So your liver is actually ok ? Do you think it could be gallstones as I have heard how painful they can be .. try not to worry. Just insist on getting a fast diagnosis. If your pain is really so so bad then take yourself to A@E .. best of luck x Linda

[Jahida in reply to Millie09]

Thank you for the reply Linda. That's very kind of you. Can you please tell me if you had these pains. So it starts in my chest or in the epigastric area and travels to chest sometimes and it hurts....hurts like hell and lasts hours. I've tried tramadol but it doesn't work.

I tried stopping lanzaprazole and I end up with a lot of acid.

Also they took my gallbladder out during transplant so unlucky for me it isn't gallstones either.

Please keep me in your thoughts. This pain started a few weeks after food poisoning!

Thank you x

[Millie09 in reply to Jahida]

Your very welcome jahida.i just wished you were not in so much constant pain. I had similar pains to you, burning in the chest area then in to my throat, I had an endoscopy done and thats when they found a duodenal ulcer. I am under a hepetologist at present , 9yrs cirrhosis but my symptoms are now increasing with hepatic encephalopathy and non stop itching. Have you mentioned the food poisoning to them ? It may or may not have anything to do in relation to your symptoms but there's definately something causing this .

Your doctor or consultant have a duty of care to look after you . If you feel like the care is not good enough you can complain at the hospital via PALS.there is always a patients liaison service there if you feel you need to complain. I did myself when my own father was in hospital with brain cancer. You stick with it!! you can't carry on like this, so push for more help now. Hoping you get some answers soon.. my best wishes to you . .Linda x

[Jahida in reply to Millie09]

Thank you Linda. I had an endoscopy last July which did not show any signs of ulcer or reflux but I know silent reflux is always hard to find.

I will see what these appts hold for me. I dream of the day to be pain free and enjoy my time with my children. We went out and I had a jacket potato. Well the pain started and now we are back home when we really were meant to go shopping for my husband's birthday.

Thank you x

[Millie09 in reply to Jahida]

Hi shahida, how are you today? So you had an endoscopy already, but that was nearly a year ago so maybe it's time to have another one just to see that nothing has now come to light, just a thought to get to the bottom 9f all this .I hate endoscopy 🤤.they will need to knock me on the head with a brick when I have mind done lol. Xx

[Jahida in reply to Millie09]

Yes I had one done last July but definitely will be asking for one for a biopsy of stomach. I've been living with the symptoms for a year and it is no fun especially with a nearly 4 year old boy throwing tantrums and making me exhausted on top of everything else. At this point I will be happy with any diagnosis because then there will be treatment options.

[Millie09 in reply to Jahida]

Totally agree with you. When I had my first endo done it was to make sure I had no varices due to my cirrohsis, they didn't find any but I did have a duodenal ulcer that had been causing me awful heartburn and burning sensation in my throat which I put down to the alcohol abuse. You really can't carry on ; especially with a 4 year old .just make that appointment and get some answers xx

[Hidden]

Hi

My name is Lynne. I really feel for you, I too have had severe pain. I had my gall bladder out years ago but the pain is like that but worse! One consultant said it was muscular! Keep on fighting, it's the only way. You are in my thoughts.

I am on fexofenadine 180mg for itching and it seems to work.

Please take care . Lots of love Lynne xxxx

[Jahida in reply to Hidden]

Hi Lynne

How are you? Thank you for the reply. May I ask what medicine you take for pain relief? Nothing is working with me

This battle is tiring me out more than the liver failure one which was another battle to even get diagnosed!

Thank you x

[Hidden in reply to Jahida]

Hi

So sorry you are in so much pain. I take zomorph 80mg, gabapentin 900 mg, oramorph. I still get pain even taking those. Liver disease is so dibilitating isn't it? I feel so sorry for you. Please take care. Lots of love Lynne xxxx

[Jahida in reply to Hidden]

I actually do not have liver disease. I had my transplant about 2 years ago and they can't find any link with the liver and pain. I wish I could say it was linked because then there's hope of treatment. They just leave you to it when it isn't the organs playing about!

[Hidden in reply to Jahida]

I'm sorry, I didn't realise. The pain meds I'm on may still help you though. I've been banging my head against wall for my consultant to advise me on what I can do to help with pain, sickness etc . Take care xxxx

[tjsidorick in reply to Hidden]

Hi Lynn I also am from MA- originally lived in southie ,savin hill, Charlestown and now Fitchburg. I used to be in a program in Lynn city of sin lol. Anyway I'm just curious I was diagnosed with cirrhosis and my last ct scan showed normal size liver with nodules and a enlarged spleen - it was like 15.4 cms !??? I just took a liver function test and everything was normal my ALT and AST were normal they were both low 22 and 23 and this confuses me cause I wonder if that is a good sign or is this irrelevant to how my liver is? I have been drinking alot water and staying away from sugar and making fresh shakes with organic herbs and veggies and blueberries, apples,blackberries, strawberries, and cherries and tumuric,spinach, and Fuji water. I am kinda fucking losing it cause I just feel so shitty I am nauseous in the morning a lot I also have varicose veins in my legs and my ankles like the bone seems to be in all getting bigger and I have discoloration on my leg started on my left leg and now it's on my right leg as well and I'm just wondering if I need to be on the list now so I guess I just assumed that you were from Lynn Mass and I really don't have anybody to talk to about it either. I just don't know what to eat what I should do and I can't sleep at night so if you've been through it or do you want to get a transplant you know I don't have any itching or anything like that I just don't know I just had my primary doctor a run full blood so I want to try to find out what my meld score is cuz you know if I guess they put you on the list if you have a meld score 14 or higher so I don't want to be sitting here you know just getting routine scans to check for cancer when I'm talking my language I'm like dying slowly here you are at least one to be on the list and then that's going to be scary as hell because take the chance of a lifetime getting opened up and putting up someone else is with her and you and I hope to God that your body doesn't reject it just so stressed out anyway if you can reply back and I could really use a a fellow friend that has the same kind of problem as me well thank you so much and I hopefully I'll hear from you

[Hidden in reply to tjsidorick]

Hi

My name is Lynne Atkinson. , I'm from Rochdale

.I'm sorry you are in so much pain. I'm very lucky to have people like you on here and a good support network at home and at work. I've got Nash with some fibrosis. Please take care and get in touch anytime xxxx

[Hidden in reply to Hidden]

Please get in touch whenever you need to. I'm here for you and anybody else. Take care . Lots of love Lynne xxxx

[Gaynorlowson]

Your post reminded me of how I am now. 5 months post tx liver working fine . But I am in pain worse than when I had opdone. Really getting me down I've been to A & E loads of times soon as they find out it's not my liver it's go away and deal with it. I had an ulcer in past so they say it's that but no further tests or treatment.

[Jahida in reply to Gaynorlowson]

Gaynor, that's exactly how I feel! If the liver is fine who cares. They don't get it that it isn't the quantity but quality of life that matters. Can I ask, what type of pain you get? What helps the pain?

It is such a horrible place to be in. I pray we all get help and the the correct diagnosis and treatment.

Thank you x

[Gaynorlowson]

It's hard to explain it's a constant abdominal pain that is around stomach area and breast bone area radiating into back sometimes the pain gets worse and then better but always painful I feel ill nauseas and it's getting me down . I've tried co codamol but that just takes edge off slightly . A hot water bottle helps a bit x

[sheri44 in reply to Gaynorlowson]

i had this after my transplant i was running to the toilet after eating the pain was awful. I lost so much weight felt so ill. I ended up having biopsies for pylori etc as I've had this before. Drew a blank on everything until i worked out i was basically living on toast crackers & noodles. It was gluten with me. My body couldn't handle it anymore. One of my first posts was about pain and sickness. Morphine and gabapentin wasn't touching it. I thought i was dying. I would burn as well as be holding my side & stomach. Had to rule it out myself then get clarification after. Good luck 🍀 xx

[Jahida in reply to sheri44]

Sheri, about 5 months ago they wanted to check for celiac disease but I'm not sure if they did as my consultant never updated me or mentioned it in the GP letter. He said he was going to look into that. Is gluten and celiac similar? How do we test for it?

[sheri44 in reply to Jahida]

it can be done by blood test or biopsies. A simple blood test can do it. Usually u need to have been free from gluten for 6 weeks prior or it can give a wrong result. Some people it says negative but they still can be sensitive to it not full blown. bring this back up. I had spoken to the dietician also who asked me to try a small amount of cous cous & see the reaction. I was so ill off it pain, cramps, toilet n vomiting. That sealed the deal. I am now tolerating a very small amount of gluten every now and then . Pls bring it bk up until u get the tests & results. Xx

[Jahida in reply to Gaynorlowson]

You should ask for an endoscopy and also the h.pylori test. I really hope they help you out. It is horrible to actually feel alone in all of this.xxx

[sheri44 in reply to Jahida]

i had it done that's when they took biopsies of my stomach. Never got the h.pylori result though as saw different consultant & forgot to ask for the results as i had so much going on

[Jahida in reply to sheri44]

Thanks Sheri, I have eaten cous cous and it never bothered me but when I eat eggs the pain is a million times worse so I avoid it. I stopped milk as well but even then I still get it and it is bad however when I eat egg the pain in some other level. I'll definitely bring this up. I'm going to be seeing the same gastro privately and he discharged me through NHS saying he didn't know what it was! How awkward will Tuesday be now x

[sheri44 in reply to Jahida]

he will have a very different view as your private this time. Trust me, I've been there. The food thing defo bring it up the blood test & i found it was trial & error with when & what food affected me. Pls keep me posted x

[matt137]

Im really sorry your struggling Jahida. Im sending over positive thoughts and wishes. Hang in there and dont give up xx

[Shanbury]

Oh my Dear- Hello. My nickname is Celeste. I am 70 ( but as they say, I never made it past 19!). I want to send you loving support. You are now in all my prayers and positive affirmations. It is so hard, feels impossible- yet even through our terror we pray and say those affirmations, right? I'm just getting out of bed after months of "guess this is it, so goodbye to my friends all- "be good to Barbry Allen"... Old Joan Baez song... Your story is the epitome of "why I don't go to Doctors". I can tell myself "Live with it" for free. I am a former Medical Professional, and when comparing notes with others- NOBDOY goes to the Dr voluntarily! Me, only if "Producing color" with Bronchitis, or yikes- the dreaded bladder infection. So. I, too have had the "non-inclusive Ultrasound"... this is beyond ridiculous!!! We must be that terribly unliked "Patien" and be damned to what they think of us. I've been on their side of the counter and have plenty of stories too... we treated every patient to the very best of our ability and laughed at stories like... One large and sturdy 103yr old, bedridden but feisty- only place I could draw her blood on her forearm. CNA's are assisting "the hold"- I'd learned to be bossy and order them to "hold like iron- and don't you dare let go!" Previous fountain of blood due to premature letting go does not happen twice! So, ANYway, just as I'm about to stick 'er, she shouts, "SOMEBODY KILL HER!' Oh my, we all started laughing so hard I could barely do my job. Hope I gave you a laugh... I do commiserate my dear. All I can say for now is God Bless, and try to rise above my scaredy cat level, 'cause they just pooh pooh you don't they... Let us hold hands- pretend to be strong and politely DEMAND what you know needs to be done.

For prime example- the incomplete US. Dagnabit they're there, right? So- We must raise our voice Just a little. Say to the ordering MD, "I will have a complete Abdominal Ultrasound, Doctor". And if they refuse? I've got increasingly horrible "Aetna Medicare HMO with new Medicaid"- you know I'm in the soup! But we've got to make some noise! Should we call the American Medical Association? I'm nowhere near in such dire straits as you describe. With my congruent, already PRE-EXIXTING Life-long Panic/Anxiety/Depression, (cannot take meds 'cause they all go to LIVER ya know) I'm a raving lunatic- if you didn't notice...

BUT I've a very kind and loving heart. So, having read your post-twice- I want to extend my hand through the ether and tell you I am with you. I will be happy to assist in any way possible... God Bless, and I hope my story made you laugh.

I saw "Roger Rabbit" five times with my kiddies. "Mommy's depressed, let's go see "Roger Rabbit" again... In his immortal words of wisdom... I cling to it, 'cause I too, like many a fellow depressed kid...became the "funny one". "SOMETIMES LAUGHTER IS THE ONLY WEAPON WE HAVE"... God Bless again and see you on the flip side- OH! f am posting madly llike this, 'cause fairly new to being stuck with no where to go save my Daughter's.... I'm sure you know what that does to one's Spirit...

[Jahida in reply to Shanbury]

Thank you Shanbury, I hope you are well. Life is hard enough with health problems and add kids into the mix and it is chaotic as hell! I will be writing a new post regarding my appointment and how it went!x

[Hidden]

Hi,

Your GP and liver specialist have a duty of care to investigate the cause of your pain.

If you are investigating H-Pylori as you have mentioned, then that can be tested via a blood test, a urea breath test or during a gastroscopy ( upper gastrointestional endoscopy) and taking a small biopsy of tissue from your stomach or duodenum lining.

You may also want to speak to your specialist and GP to see if you would be appropriate to be referred the hospital pain team to try to get your pain treated and managed more effectively.

Wishing you well,

Rebecca