newbie here, feeling very lost

[bebyt]

Hello

I am currently waiting some form of diagnosis for the ongoing abdominal pain that I have been experiencing intermittently since October 2017 which came on after taking macrobid for a kidney infection.

However since Mid February I have had 3 hospital admissions because the pain which is always the upper right part of my abdo has become so severe I literally cannot cope any longer. Originally gallstones were suspected but after 2 ultra sounds scans and a CT scan the surgical team are adamant that this is not the case. When I was discharged yesterday I asked for a copy of all the bloods they have taken (the doctor was very reluctant to let me have them, even when I explained that I wanted to discuss them with my gastro consultant who I see for my UC)

What I now know is that my iga levels have raised twice since 22.02.19, I have an elevated C3 Level, the dsdna antibody came back as above the expected range, I have raised ALT levels, low creatinine and haemocrit levels. This is despite the fact I have consistently been told by the hospital that my blood results are ok.

My quality of life at the moment isn't great, I am exhausted all the time, my belly looks like I'm 6 months pregnant (and weirdly where the pain is feels like something is poking out there?!) I have now started to develop itching all over my body and to manage the pain I take paracetamol, dihydracodeine, gabapentin and morphine for the really bad days. I have had to cancel my honeymoon as I was admitted to hospital 3 days before were due to go and just spent mothers day away from my 8 and 5 year old because I had been readmitted. Also I haven't been able to work since the first hospital admission which whilst my employer has been quiet respectful and understanding its not ideal.

Because scans and in their views my blood tests are ok they have now pretty much told me that they probably aren't going to find the cause of this constant pain and that since I have been referred for pain management I'm going to have to deal with it. Do I really have to accept that at the age of 35 I am just going to feel this way forever without any form of answer?

Sorry for the rather long first post but I'm looking to move forward with this and any advice you guys could give would be massively appreciated!

Thanks

Tanya

[Liversliver]

Bebyt,

Sorry to hear about the issues your having. Im actually in a similar boat....Ive been in pain in right abdomen for about 5 years. I did have other issues with hep c....but i was only expose for about a year....treated and cured...all my labs return to normal ranges. I can barely work due to the pain. Feels like something is poking out, or lodge in that area. Its super painful. Nothing has shown of what issue could be.

[bebyt in reply to Liversliver]

Wow 5 years! I’m very sorry to hear that. On my last scan I don’t think I’ve ever been so desperate for something to show up just so I had some answers. The doctor keeps telling me I should be reassured by all the good results but that doesn’t help with the relentless exhaustion and pain daily. I hope there’s som much needed relief for us both soon

[Megbird]

Sorry to hear about the pain you are experiencing. I am sorry also that you had to miss your honeymoon. It is not nice to be in constant pain. I don't think it will last for ever. It seems that you have a good medical team who are looking after you. This is just an option and a suggestion, as the result of your blood test you could ask to be referred to another specialist team. Alternatively as the last resort you could try a reliable private hospitals, which can be very expensive too and see what their opinions are. I hope that you feel better soon.

[bebyt in reply to Megbird]

I have to admit apart from the doctor in my last admission who completely patronised me by saying it could be a pyschological thing I have been fortunate enough to receive excellent support and care from the NHS staff I’ve seen. It’s one of the reasons I don’t want to have to go privately unless absolutely necessary because I appreciate everything they’ve done for me I’m just so very exhausted from being ill and trying to get answers. I will speak to my gastro consultant tomorrow with the results I’ve got and see what he suggests. Thank you for responding it’s mub appreciated

[Liversliver in reply to bebyt]

Please tell me what they say...they just say psychological crap when they cant figure it out and if test are normal what else is there for thrm to do..? Thry told me same here i am with some more symptoms surfacing 5 years down the road.

[bebyt in reply to Liversliver]

My husband who isn’t the most observant on people actually laughed when he heard about the psychological thing. He said absolutes no way would my stomach expand this much after eating if it was all in my head.... I’m sorry that you e been left to suffer for so long

[Megbird in reply to bebyt]

You are welcome get well soon.

[Michiganpbc]

Have you had a liver scan and or liver biopsy? Also have you had a blood test called AMA? I have PBC my symptoms started out like yours, ask your doctor about it, good luck.

[bebyt in reply to Michiganpbc]

No I haven’t but thank you for the tip. I have had a look at PBC online and I do have a lot of the symptoms so think I will mention it to my GP. I’ve had Abdominal scans over the last few months since they suspected gallstones alongside a MRCP (which showed I had pancreas divisum) so unsure if the liver would have been checked on those? Thanks for the reply I very much appreciate it

[Michiganpbc in reply to bebyt]

Ask for test to rule out PBC PSC its not hard to diagnose they just need to order the 2 correct tests liver biopsy ama and labs for liver enzymes do some research and get checked the sooner the better as you can get on med to slow progression

[AyrshireK]

When you say you see a gastroenterologist already for UC - is that Ulcerative Colitis?

A complication of Ulcerative Colitis can be Primary Sclerosing Cholangitis. Check out the NHS page on UC and you will see this link mentioned there. nhs.uk/conditions/ulcerativ... PSC like PBC which has already been mentioned is another auto-immune illness of the liver but there are close links between PSC and UC.

Defined as:-

Primary sclerosing cholangitis

Primary sclerosing cholangitis (PSC), where the bile ducts become progressively inflamed and damaged over time, is a rare complication of ulcerative colitis.

Bile ducts are small tubes used to transport bile (digestive juice) out of the liver and into the digestive system.

PSC does not usually cause symptoms until it's at an advanced stage.

Symptoms can include:

fatigue (extreme tiredness)

diarrhoea

itchy skin

weight loss

chills

a high temperature (fever)

yellowing of the skin and the whites of the eyes (jaundice)

There's currently no specific treatment for PSC, although medications can be used to relieve some of the symptoms, such as itchy skin.

In more severe cases, a liver transplant may be required.

The British Liver Trust has a page about PSC which might prove useful reading. britishlivertrust.org.uk/li...

Maybe your doctors need to explore this further.

Katie

[bebyt in reply to AyrshireK]

Thanks Katie that’s fantastic. Yes it’s Ulcerative Colitis, I was diagnosed in 2008 though luckily at the moment it’s very well controlled without the need for medication

[sunnysmile]

Wow Ayr - that is some post . So informative, bet the docs have not considered it.

Gwen

[Hidden]

Hi

Katie , you are so good at advising people.

I've had pain for nearly 5 years!! One consultant thought it was muscular!! I have Nash caused by meds from my DRS over the years. I do have other conditions like I'm sure most of you do. Ia biopsy would be good to have, that's how I was diagnosed. I hope you get sorted soon and become pain free. It's very exhausting isn't it, awake most of the night. Sending all my love to you. Lynne xxxx

[bebyt]

Well I had my gastro appointment today and I really wasn’t expecting anything from it but wow I’ve been blown away.

We discussed my recent admissions and my blood results which I took with me. He wasn’t hugely concerned over some of them but he did express his idea that it might be liver related so he logged on to my scan results from about 6 weeks ago and he found that I have a slight fatty liver.

I’m unbelievably cross that I have consistently been told that my tests etc are fine but that’s actually not the case. It’s likely that the drugs I have an intolerance too along with being overweight has contributed to this. He also agreed with me that the pancreas could be causing me problems given my symptoms and blood results.

Whilst I’m relieved that I finally seem to be getting somewhere I’m not really sure how to proceed from here other than obviously losing some weight and I’ve made a routine appointment for in a few weeks time with my GP.

Thanks for all the replies and the moral of the story is don’t give up, get copies of all results and believe in yourself! We know are own bodies and should not be made to feel like your making it up

[jazzjam]

Good for you and the feedback people gave you on here. I have learnt so much from here, the main one is ask ask ask. Your GP doctor seems as though he is not writing you off. I wonder if you are in the UK, I was back a while back and when I asked for a copy of my results you would think I had just confessed to murder. They don’t like you knowing.