Young but no one is taking my concerns seriously

I feel you man, it’s hard out here. I guess it’s good then if you’re not deficient in anything, including vitamin D. Sounds like a tough time, and you’ll get answers soon enough. 

Speaking of, I got my faecal elastase results today and it showed I was severely deficient. The sample was watery though, so they want a redo with a solid stool.

I got really flat after seeing those results today. I just want to go home, but I have to wait for my CT results. My brother is going away tomorrow for a week and a half and I’ll be on my own. It felt surreal today, because I thought shit, this could actually be it. I don’t know how I’ll go getting the results if my brother isn’t here. I can’t do this alone.

It is good, but then again, leaves me sat here wondering why I’m feeling the way I am. Just feel so tired and dizzy 24/7, I need to get back to work, only getting half pay. Got a child now that I need to support and my partner. I’ve just give another blood sample today to check ferritin levels and vitamin D again since I have been supplementing vit D now for a month so expect some form of result from the supplement. 

oh yeah it’ll be that, they said on my packaging (which arrived today from selph) not to provide a sample if the stool is loose. They need two half test tubes full, so tomorrow morning is going to be eventful, sick of playing with my stool currently. I’ve had to pay for my calprotectin and elastayse test myself as my GP said there’s no point in testing it. (Ridiculous). 

I wouldn’t be defeated by that test, it only can show EPI and not a definitive way of diagnosing anything really, just that you’ll need some enzymes to help your digestion. Hold out for your scan results, they will be the real answer to your questions. 

at least you’ve been for the scan, I’m petrified to book mine as I’m frightened of the results. But I really need to, just need to know what’s wrong with me now. It’s been too long with no real answers from any medical professional. I can’t wait for the hospital and their CT scan. They said it can take up to 6 weeks. 

if you need your brother there, then maybe wait it out until he’s back? But it’s entirely up to you. It’s tough, real tough, and half of this battle is actually finding out. My lymph nodes have been flaring up again today, not been as bad for weeks, but today especially in my left neck are really sore. (Had these ultrasound and they’re fine) keep the faith, and message me if you need out. 

Hey Briersy - how are you getting on? Were you able to return to work ok?

I got an email yesterday saying the CT scan results were uploaded on Patient Knows Best. I got super anxious and didn't look at it at all yesterday, however, went to look at it today and it only says the report won't be available until a later date. This happened with my CT urinary tract that A&E took as well, so I know the medical team have access to it. I think I'm actually relieved a bit because I wanted the weekend to just chill out. I'll have to hear the results from the doctor. 

Six weeks sounds like a long time - I thought it would have been through the 2WW, so surely would have been quicker. 

Starting to pack my things up now, no matter the outcome, I'm likely to return home sooner than I thought. I'm currently not working and there's no point in me being here if I'm not travelling or doing the fun things I intended to do whilst being in London. 

Hello Blico, still the same, still have these dizzy spells and feeling really uneasy on my feet. Such a strange feeling. It comes and goes which is weird, so no I’m not back at work yet. Just down to reduced pay.

i have everything crossed for the results of your CT scan, I’ve just had a call and they’ve booked my CT scan in for tomorrow which is a lot sooner than I anticipated, very nervous now. I’m still in pain on my upper left shoulder which sometimes radiates across my back and my left abdomen. So I’m really really nervous of what tomorrow will show. 

I’ve still got to book a MRCP scan with Vista which is on my to do list. I’ve been spending some quality time with my newborn son, whilst the worry isn’t as bad. Can’t help but think I want more time. Even though I’ve not been told anything officially yet. My stools are still very large and slowly still dropping the Lb’s which is also concerning me. 

good to hear you’re packing up and heading back home. Hopefully you’ll feel better asap and get back to some form of normality! Keep me updated with your progress. 

Sorry to hear you’re still not feeling well. I’m in the same boat. 

Glad they got you in for a CT quickly and fingers crossed for you. Was going to ask how much roughly was going through vista? I might have to do that.

I found out my CT was normal through a discharge summary the gastro doctor sent to my GP. He didn’t even bother telling me the results over the phone. What I’m frustratingly  perplexed by is that I still have symptoms, but the CT is clear? 

I’ve resent my faecal elastase test again which is the biggest clue so far that my pancreas is the problem based off the test I sent earlier (which showed I was severely deficient). However, the sample was wet so I had to resend another one. Hopefully this comes back with answers that will warrant further investigations or not. 

I’m also super frustrated the gastro doctor discharged me without waiting for the results of the faecal elastase test he ordered. Like - is that not just severely bad practice? I’m going to make a complaint about that, because that’s just so poor on his behalf. 

Hello Blico, 

have you decided whether you will be returning home or sticking around for further tests? I’ve had my CT now, had it with contrast too, so I’m guessing that will show if anything is out of place. I have to wait for 1/2 weeks for my results now, dreading the results. 

had my elastayse and calprotectin results today. My calprotectin was boardline which they’ve recommended a retest in 2 weeks, if still boarderline then recommend a colonoscopy. My elastayse has come back “optimal” which im absolutely over the moon about. I know it’s nothing definitive but it’s a positive outcome at least. 

think ive just got to wait for these CT scan results now to try and get some clarification as to why im feeling the way i am. 

hoping you’re feeling better soon. 

Hey Briersy,

I’ve decided I’m going home, but need to sort out my lease and rent before I leave. I’m still waiting on the faecal elastase test to come back, but that could take a while. 

I feel a bit hopeless, my GP just said she doesn’t know what’s going on with me, and neither do I. I’m still showing symptoms such as fatigue, joint pain, all the GI symptoms still. I know the other tests I could do are the endoscopic ultrasound or MRI, but 100% can’t do it through NHS cuz everything else has come back clear. There hasn’t been one day where things have gotten better, and no one so far can tell me what’s going on with me. Sorry to rant, I just felt really upset today that my quality of life has plumetted in the last two months and I have no answers.

Fingers crossed your CT comes back clear. So happy your elastase came back normal - very good sign for you! Glad you got some answers and hopefully you’ve started to feel a bit better?

Hey all, 

A general update for Briersy and any onlookers. 

Hope you're well man! any updates?

I returned back home and settled into my parents place which is absolutely lovely. It is great to be surrounded by family and friends.

Unfortunately, things have gotten worse for me - I've had several symptoms of many body parts since. My new GP is good, and genuinely investigates my complaints, but probably hates me every time I see her haha. I've had multiple investigations - the only things that have shown are a few spots on my CT chest which werent there 3 months ago (2mm in size, not big enough to do anything about). I've recently shown some sinus symptoms (classic signs of sinus cancer), and I had a CT sinus which showed some abnormal growth and mucosal swellings.

I had an ultrasound of my abdomen that showed no abnormalities. Despite this and a clear CT abdomen in April, I'm like 95% sure I have ascites as I hear fluid sloshing around my stomach when I press into it. I now have swelling in my feet when I stand for longer than 5 minutes and shortness of breath. 

I can't believe it's been 7 months of dealing with this crap - I have no confirmation of anything yet, but i've noticed a gradual decline in my physical health and I feel like I'm dying tbh. I'm like 95% sure I have cancer, not sure what type, but I've just given up trying to figure out what started it. 

At this point, it would feel a relief to get answers, but I feel the answer would mean nothing or add anything as I don't feel like it would change anything in terms of treatment/management. 

I'm not sure where things will go from here, but I've been taking things day by day. Hope all is well with you!

Hi Blico,

good to hear from you! Been a while now hasn’t it. I completely understand with all your symptoms and your thought process. I’m sorry to hear that things have gotten worse and you are going through similar situation to myself.

Im 100% sure you will have some answers soon enough. Once you do, you can begin a healing journey, because without them answers, all we are going to do is think about the “what if’s” 

as for me, I’m still going through the same issues, I also feel like I’m getting a lot of fluid retention, in a month I gained 26lbs and my doctor was concerned so has referred me to a gastroenterologist. (This is a 28 week wait so next April/May I’m looking at an appointment) been diagnosed with hypertension and an irregular heart, so I’m currently going through the cardiologist at my local hospital, but like everyone in the NHS system. This is a 11 week wait. So March 2026 I should be seen to. Ridiculous. Still have the back pain, still having reflux really bad to the point I’m throwing up black tar in my sleep. Doc’s don’t seem to bothered by it, so neither am I. I’ve got my head back straight now and managed to get back to work. I’m on a reduced working pattern, but not sure how long this will last. 

My CT results come back good, only thing of note was diverticulitis of my sigmoid colon, they said it’s minor and is normal (apparently) so instead of hitting chat GPT or google, I’m taking everything at face value, as I have a little boy and he’s my main priority. 

im hoping we both have answers as soon as possible and we both get back to full health soon. But I still have my doubts with any of my diagnosis so far. It’s petrifying but we’ve got to just crack on and hope. 

Good to hear from you man. Keep in touch. All the best. Briersy.