Finally after great deliberation my doctor referred me to a gastroenterologist.
I am undernourished & would like some advice on what I can do to help myself?
Eating solid foods seems aggravate my stomach & as soon as it's down I get this painful spasms, I feel sick Vomit, & the growling sounds get louder once I've tried a tiny bit of food.
It's been 2 months & ive lost a stone & a half.
I asked my doctor about being referred to a nutritionist but she denied & plus I asked about some shakes that I could try & again she said they don't do it on the NHS so she cannot help me. I told her about my change of bowel movements. I have had blood, & my stools are full of mucous & orange.
My urine is full of bubbles & foamy & it smells like ummm ammonia!? It's a foul.
She didn't think a dip test would be beneficial.....š
I feel ok if I don't eat but it's getting to the point where I feel faint, sick & dizzy throughout the day, a few sips of soup & a bite of bread every other day. It just hurts to much to eat & drink..
I have tried sips of different shakes but I just am one in pain & two dreading the agony.
My parents are coming round everyday making sure I've had at least a little something , it's a lot of pressure & pain & it's hard for anyone to understand how difficult it is too eat, I'm not not sleeping at night due to the excessive acid reflux, I'm chocking, sour taste in my mouth. Waking up having coughing fits, burning stomach pain, gurgling sounds. It's just much worse than it was, the gastroscopy is vital to reveal what is going on, & thankfully !! The general anaesthetic will give me an induced well deserved sleep.
I have to say it's getting me down, a few members of my family have had episodes of reflux but nothing like mine, they take remedies and it's gone.
My grandad died of oesophageal cancer, Its been under control for years but the last 2 months have been hell.
I have found what feels like a Lump in my stomach, I was rubbing my right ribs because they have pultruded outwards, & I get severe pain underneath them as soon as I've eaten, & just below them I felt a lump/swelling it's an unusual feeling, but I can't press to hard as I have a constant gnawing pain.
Any advice about what I could eat or take to help me would be amazing. I used to love my food, but now I dread the thought of it.
Help is much needed, thank you in advance ā¤ļø
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LauraMk30
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Don't no about shakes but you an get a shot drink that is high calorie high energy my daughter is prescribed them and they are on NHS but I would push for a dietitian hope this is useful
You've lost a great deal of weight. Are you now underweight? I had similar symptoms I attributed to stress and delayed seeing a GP until I was significantly underweight. After a couple of fast tracked gastroscopies I'm much better but I continue to have mostly contollable symptoms. At the time my GP feared something sinister but all is clear. Have you been prescribed anything for reflux? That has helped me a great deal.
My referral to a dietition started off with pretty much telling me to eat more ( as if I hadn't worked that one out). NHS shakes and supplements taste, to me, very chemical and artificial. I've found other ways of, at least, not losing any more weight though I'd like to put some on.
Hey lupiknits, yes I am now underweight. I take 60mg oral dispersal Lansoprazol.
I've had GORD for 14years. Was untreated for 10. But over the last 4 years I've been prescribed different acid suppressers.
My issue is I ate a scotch bonnet dish made by my partner who thought it would be a nice meal surprise ! But it's literally torn my stomach apart. He knows of my GORD & what I can & can't eat. So I think that's caused this problem with my gut.
I struggled to swallow during the first 5 min of eating the spicey food, gastric acid was unbearable, just felt like my throat was closing over. I was sick the day after & ever day for 2 weeks every time I tried to eat. & vomiting subsided but I feel sick all the time now & cannot digest food.
I haven't seen the gastro yet still waiting for an appointment. I'm really struggling atm & food is becoming a burden.
I would like to change my GP but as I'm going to Pursue taking them to court for medical negligence I need to stay out for now. They're not aware of my wishes but as I've had years of being turned away and treated poorly I think it's time for some justice. X
That scotch bonnet has done its worst, and if I had had that - or even some alchohol I, too, would be in a bad way. Your GP must adress this quickly, and please take your parents as others have suggested. I can physically feel your pain.
In due course, join another practice (I've done this) and you can then pursue your complaint.
Thanks Lupiknits, sorry my last message sent before I could finish..
My dad has gone in with me to see her on a few occasions my boyfriend too. Her attitude quickly changes, but I'm still made to wait longer than most people. She does need to take this seriously, I feel as if I'm more of a joke.
Her husband works at the surgery too. & I saw him when my second bought of rashes flared. & he assumed I had chemically burned myself.. as he wasn't sure what could have caused it, " he didn't know what it was so assumed I was self harming" I was mortified, & I felt so upset. Why on earth would I do that to myself ? I felt humiliated beyond repair.
Few Months later I saw a proper doctor after being admitted for a Blood clot it was only then when a doctor mentioned Vasculitis.. my Gp had never heard of it. & even smirked at my lupus diagnostic blood tests all positive. So maybe they have a vendetta against me or they personally dislike my complexity.
I wasn't aware that I could leave my surgery & still proceed with my complaints?! Now that I know I can put the changes in place to switch.
Thanks so much & of course will keep you posted xx
I wasn't aware that I could leave & still pursue my complaint.
My dad also has requested information online how to go about it properly so moving surgeries is allowed then !? as I thought staying there would just mean more unnecessary suffering & if i did leave would they accidentally on purpose loose my records!? So I couldn't proceed. I just don't trust them & im sure they would go out of there way to Make the whole process impossible.
You need to get some proper advice. I would encourage you to research PALS or the health ombudsmn. Medical documents are legal documents and are even kept in archive for 100 years after your death. They dont just disappear, that would be negligence in itself.
Why would you risk your health by staying with a practice who you think arent treating you properly. Any solicitor looking at a case may think, "well you mustn't have been that concerned as you stayed with them."
If you think that there has been clinical negligence make a formal complaint, and it has to be formal, instruct a solicitor who has knowledge in clinical negligence and for goodness sake move practice so your health isn't compromised any further.
Do be careful where you look on the internet for advice a be careful of "where there's blame, theres a claim" firms. Do some research into a solicitor and they can advice you. There is also a charity set up that helps with these claims and offers advice. Its too late now but I'll see if I can dig out the details.
Medical notes dont just disappear, GP notes have been electronic for years so stop worrying about that.
I've been trying to sort this out but now I have a definite diagnosis I can proceed without delay. I'm not very educated in regards the medical negligence & solicitors etc but I know my dad can help me. I've been told so many things over the years that I just assumed I had to stay until a solicitor had spoke with them in regards to my case. I'm just not very educated in this sort of thing.
The reason I mentioned the records as I have signed a check & posted a request for my entire medical records. That was December 2016 & I haven't received them yet. I know they have up to 21 days to confirm & send.. I'm not 100% but I know they have a certain amount of time to get it done. That's 8 months ago..
I need to do some research or visit Citizens advice, which is tomorrow's plan for my dad & I to go there & see what my options are. As everything seems out of reach.
I'm glad to hear those cannot disappear.
There proof that I've endured 14+ years of Ill health & nothing has been done to change that. Not then or now.
Have you seen the gastroenterologist yet? If not, can you try to bring your appointment forward?
Losing that much weight is not normal .....maybe one of your parents could come with you to see your GP......two voices may persuade her you need to get some help sooner.
If your present GP continues to refuse to refer you to a dietician...I don't think nutritionists are available in the NHS...maybe you could find another GP?
No I haven't, still waiting for app in the post. I've asked if I could have the app as urgent but I just got a nodd & grunt from my GP, I'll have to wait like everyone else, that was the reply.
I then asked if it's going to take a while & how long..
as I literally cannot wait months. I said i am a bag of bones, I've lost a stone & a half. Not eating & not receiving the right amount of calories or goodness on a daily basis I'm concerned about it. So I proceeded to request a referral to a private hospital/consultant. So my dad could pay, as he offered as he's worried about me. & my health. I've declined massively over the last month,,& all I have ever asked is for a little bit of understanding & help to get better. I've never gone into her office demanding for this that and they other.. I've played by there books & not got anywhere fast.
So If the appointment doesn't come through by Friday I'll be going down the private root. But hopefully & fingers & toes crossed my gastroenterologist appointment will hand on my doorstep sooner rather than later. Praying x
Do remember if you have a Private consultation you can always go back to the NHS for treatment.
You will quite probably require at least blood tests, & ongoing Private treatment can get very expensive.
Once you have got into a treatment programme I would definitely look into finding a different GP- but having said that I am hearing from all directions that GPs are holding back in referring patients to hospital on what appear to be cost grounds. I reckon if a GP is seriously putting money before the health of their patients - they should retire!
I now have a private appointment booked for Thursday 24th August. I put up a new post ie- Great news
I have been down the private root once before and it was very expensive, but it was worth it. I had some extensive blood tests as my doctor wouldn't agree to do them as she said I was fine.. hmm
Results came back with many positives & she still overlooked the positive ones for lupus. I said it was highly unlikely.. ummm duh!
I think she should retire. I couldn't sleep at night if I were her.
I will be changing GP's when a treatment plan is in place, my life has been in her hands since I was born, & 31 years to be exact.
I'll definitely keep you posted & I feel positive about next week. It's the light at the end of the tunnel xx
Good grief your GP isn't doing anything to help?! Ugh.... and no one knows what is happening? Did you do a course of antibiotics recently? I wonder if it killed off your intestinal flora - this happened to me at one point and it was excruciating. I lost a LOT of weight as I couldn't eat. But even then until we know what's happening with you, you could eat anything and I'm not sure it would do much good :/. Are you able to drink water? Does it stay down? Is there another GP in your practice you could see?
Hi Laura, so sorry your feeling this way and that your GP isn't giving you the support needed. This sounds similar to symptoms I've been having, but more extreme. I was unable to eat more than a few mouthfuls, was constipated and with severe bloating which expanded my ribs. It's far from being resolved but is significantly better after:
- Laxido, 1-2 sachets per day. Although mild this has led to other challenges! But on balance it's a better situation as this has made a little room for:
- tiny meals up to 6 per day e.g. 6 nuts, 1/2 piece of grilled salmon, slice of smoked salmon, home made liquidised veg soup (I find fresh veg difficult to digest) and soft fruits with a small amount of natural Activia pro-biotic or Greek yoghurt. I also now take 2 capsules per day of Vitabiotics ultra cod liver oil plus omega 3.
Although the underlying cause has yet to be resolved I'm gradually feeling a little more comfortable and getting appropriate nutrition.
I hope that this is of some use and that you get your appointment with the gastroenterologist soon!
Have you tried build up shakes? They come in ready mixed or sachets. They also come in ready made smoothies that you can slowly sip. I lost a lot of weight prior to my diagnosis and they really helped as they weren't too heavy.
Its pretty late and a I won't go into detail but with the symptoms you describe of foamy urine and a change in bowel habit, I really think you need to consider changing your GP. It sounds like they aren't following NICE guidelines and aren't taking you seriously.
A new GP may mean a totally different approach to your care.
Nope.. & no again.. I haven't had antibiotics recently. A month ago I did for an infectious wound Biopsy infection but It didn't touch it & I ended up waiting it out.
Jeez I'm so sorry to hear that you have gone through something like this ! The pain is immense ! I wouldn't wish this upon anyone. I feel for you !! & can empathise the weight loss. It's awful šš»ā ļø
At first I couldn't keep water down now I make sure I have sips throughout the day.
Or sucking on ice cubes.
I have been dehydrated at some stages as my lips are totally chapped & split & sometimes bleed, due to not drinking enough.
I've had some sparkling water today it was really refreshing. I think the only way to describe what it feels like is. It doesn't matter what I eat or drink I have a constant burn in my throat & stomach there is nothing I can drink to put the fire out It's constantly burning š„
I do have an app Wednesday with a new doctor so hopefully she will have some heart & help me with this problem.
A month ago is still relatively recent. You had a biopsy infection? And by 'waiting it out' does this mean the infection cleared up? There seems to be a lot of issues here, But as you say it may have been the peppery food; I've had throat burning recently due to ibuprofen where it felt like my throats was on fire, had to cut it and some other stuff out so it can heal.
When I had my bout (I lost 50lb in 3 mos, and my blood pressure teetered on the brink of having a stroke) I ended up in A&E and they fast tracked me to a gastric specialist in a week but that was the US. Eventually healed my gut with lots of acidophilus products like acidophilus milk, yogurt, etc but that was only due to finally knowing what it was I wouldn't try this in your case yet
It sounds as if you are being discriminated against if they think you are self-harming. I'm livid on your behalf! If you get no results on Wed please do switch practises and I even think a trip to A&E might be worth it if your lips are bleeding. When your health care breaks down you need to get some kind of care., you can't waste away like this. I learned that roughing it out got me nowhere and the pain and rose in blood pressure was just as bad if not worse for me physically.
Hey silvergilt, sorry for my late reply, my internet connection is poor !
I had a very large lesion on the side of my lower leg. & as I was being investigated for Vasculitis at the time the triple punch Biopsy was taken.
I felt poorly an hour or so later, felt like I caught a bug on the train journey home.
Went home & rested, left the dressing on for 3 days as asked. As soon as I took it off it was swollen, red & inflamed, weeping & oozing green & yellow pus ! I posted some pics, there all on my profile.
I was given an oral suspension antibiotics.
Took it all & no change.
Went back to the doctor who booked me in with the nurse. She was appalled with how it had been left, so she had to dress it with flaminal gel one day a week. & then when I couldn't get to the doctors I was given gloves, saline, gel, & dressing to do it myself.
My partner had to do it for me as I was feeling so poorly, the flaminal forte gel is used for necrotic skin infections. I had to gaping holes In my leg ! It took nearly 3 months to heal. I took the weeks course of antibiotics. And waiting it out meant I wasn't allowed anymore antibiotics so I had to just pack it & dress it.
I get terrible headaches & ibrofun helps but I can't take them due to the burning you describe !
It's a horrible feeling ! I'm sorry to hear you have been through hell, I'm glad to know they sent you to a gastro specialist. & your gut seemed to heal with the yogurts etc.
I was humiliated beyond repair, LIVID is a great word!
That was the day I called out of hours at the hospital as I had what looked like a blister rash all up my arm. I was hoping the duty doctor was gunna help but to walk into the office to find out it was my GP's husband was like walking into hell! & for him to say I had been self harming was literally a kick in the teeth! I said along with my exhaustive list of symptoms & years of illness & all the private blood tests I paid for which reveals strong evidence that something is really wrong with me I find your ignorance rather disgusting. & with that he walked out. & another doctor stepped in, I wasn't given anything, I went home & sat up all night with a cold compress. & then for months after I had rashes come up on my legs which turned into ulcers, I had all the classic symptoms. But I was treated as if I was the invisible girl.
I still feel like that now even though I have waited 14 years of my life for a definite diagnosis of SLE. But other things are going on now & my GP has turned a blind eye again..
But this private appointment is the light at the end of the tunnel & thankfully I'm on the ball & I'm doing a better job than my GP l want to do whatever I can to get myself better. X
I think the first place to look for help is a specialist - the cause must be found before any dietician can help with suggestions. Rapid and significant weight loss should be a trigger for a fast-track referral - so I hope she has not merely sent the request as "routine". Take a parent with you to the doctor and insist on proper treatment. You must also be able to see another practice member - whatever the receptionists may try to tell you.
And if you get nowhere with the practice - contact 111 and ask to see an out of hours doctor, explaining the problem. That MAY get you an independent opinion, can't promise though.
Thank you, my recent post is about my private appointment with a gastroenterologist next week 24th August. Thanks to my dad & boyfriend.
I assumed that but it's like getting blood out of a stone with my GP surgery. They are all the same. It seems routine even though I went into her office literally begging. The appointment she made was for
15 weeks away!
Thank you so much, taking all the advice on board. Helps more than you know x
Hi Laura. I have not been able to read all the responses but i'm a bit on a hurry. I am pretty sure you can complain to the gp once you changed. Also it's more important that you are on good hands than complaining considering how poorly you are. This disease is very messed up but being treated by someone who doesnt know is dangerous. Get out of there asap Unrelated to this bit i once sent lettee of complaint and moved gp surgery at the same time. Second, aurely a lump in your stomach/tummy must be investigated asap. Lumps are often a fast track issue. You can also call 111. I did once and they recomnended i changed gp and went somewhere else asap! You can then go to a walk in centre. However i think if i was so much in pain and i could not eat or drink i'd seriously go to A&E. Your health seems to be at risk and i think it's fair you use this service. Also can you not contact the secretary for your rheumy? Ask if he could see you or refer you himself or even write to gp to explain how severe is your condition and that they need to act fast? Also try calling the hosp appt line and see if you can get a cancellation slot at short notice for a gastro doctor. Please do not let them mess you around. Push push push. Best of luck
Hey thereisalight āļø I love your name āļø uplifting
Some drastic changes have been put in place over the last few days. I've got an appointment with a private gastroenterologist 24th August. I've been in contact with the specialist I was seeing & she will be sending my case file in the post that I can take to my appointment.
My A&E is somewhat adverse. I have been a few to many times & sent from pillar to post. So now I have this appointment i can hold on till then. But thank you for your message & sincere concern.
Most importantly how are you feeling? I know nothing of your journey but you have reached out to help me with mine. I appreciate that a lot.
It's nice to connect with people who are going through similar things, & understand what it really feels like behind the mask.
My GP must have some sort of Vendetta there is no other explanation to justify her attitude towards me. Personally over the years of visiting her she has never felt the need to help. It is her duty as my doctor to provide a service of care Which I haven't received but the only thing I know all to well is neglect.
I'll keep you posted & thank you for reaching out to me.
Sorry it has been manic lately. I'm reasonably ok really. Struggling with managing my reflux which gives me throat issues like something is stuck in my throat and some postnasal drip. Endoscopy was normal, hpylori seems to be gone by breath test. Not sure what the doc will do next. He mentioned ct scan. Now i have LA anribodies found which is a worry!
I have had an appointment come through today for gastroenterologist - 28th November!!! The choose & book service gave me 4 hospitals to choose from and all appointments were for November so I just chose Gloucestershire royal hospital.
Seriously.. I've got in contact with my surgery today to speak to my GP but she's apparently away for 2 weeks. & I cannot speak to another doctor as it's her that deals with my illness. I did say surely I could speak to someone else as I can't wait till November I just can't !
Someone will speak to me on Wednesday about it.
I've just emailed the neffield hospital to see how much it would cost privately.
I'm not going to get myself upset again, have to stay strong & push forward.
Sorry to sound like all my posts are negative, but I only receive negative treatment from my surgery. I have no one else who understands what I'm going through so you guys are the only ones that do. X
Thanks for taking the time to message me. Means a lot.
I really do feel for you, having to go through something like this. It's frigging horrible !
I've written down what you put about the 6 tiny meals a day. Seems like a big challenge but I'm willing to do just about anything to try and eat. I relate with the bloating, after only a biscuit my belly becomes hard & bloated.. šš»
I have picked up some Andrews liver salts apparently it's good for nausea etc helps with bowel movements too.
So going to try a half a spoonful in water and see how I go.
Thank you so much for the advice I'm taking it all onboard. Hugs xx
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Week 3 of 'Lupus recovery diet'
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