Since been diagnosed Seropositive RA in 2016 and coeliac disease in 2017 I completely changed my diet 100% thought I’d get back to normal feeling better with Coeliac this hasn’t been the case, along the way I’ve had a few flare ups of what they thought was diverticulitis which showed acute diverticulitis also the Colon is not absorbing fluids following MRI scan (without contrast dye due to having reactions to certain meds they didn’t want to risk using contrast dye).
Still not feeling any better had a few phone consultations during lockdown with Colorectal consultant, was invited a few times for a face to face with him. August had MRI scan without contrast dye which took 90 mins straight after was offered CT scan this was bolt out the blue wasn’t booked which took 10-15 minutes. I was asked to go book for results which I received within the week to be told the problem lies with the tail-end of the Pancras not having any blood supply and that I needed another MRI scan called MRCP with contrast dye with a team standing by in case I had anaphylactic shock to which I didn’t, this i had last week. Yesterday I received my results which shows I have a tumour on my Pancras, consultant went on to say that he believes it is caused by a certain hormone, he believes it is not cancer. I did not know the Pancras had anything to do with digestive system as I’m not absorbing nutrients plus having lots of digestive problems. Having lost 2 brothers one in 2012 and 2019 I was happy when consultant mentioned he does not think tumour is cancer.
Consultant this weekend will be writing to my GP to refer me to a consultant with deals with Upper G.I. Gastroenterologist who deals with the digestive system.
I am wondering having Seropositive R.A could this have anything to do with my immune system attacking organs ? Throughout I try to lead normal life cannot plan things in advance.
I coped well yesterday being upset but coped, this morning I’m feeling quite scared and crappy, Very low and tearful 😢 I think it’s coming to terms knowing I have a tumour and the not knowing. I just want to get better.
Thank you all for reading xx
Written by
Pamelah5
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It sounds like you are going through a lot right now and I'm so sorry that you don't feel great. It sounds like things are moving on with regards to referrals so that's good. Take good care, be kind to yourself and sending some warm wishes your way x
I think that it's natural to feel worse the day after an experience like that as adrenaline probably kicks in at the time to help you to cope and then you feel drained when it subsides. Try to relax if you can and take comfort in the fact that you're in good hands and that they're being thorough.
Of course you just want to be and feel better and hopefully you're on the right track to attain that. Meanwhile do keep posting and let us try to support you. 💐
Dspooky01 thank you for replying, I’m also sure consultant wouldn’t of committed himself into saying he’s quite sure it isn’t cancer. I just want to get back to how I was before all the symptoms of nausea 24/7 plus all the rest. I’m wondering whether it has anything to do with RA attacking the organs xx
I'm so sorry you've had such an ordeal. It's the word isn't it ? I really hope that you get sorted soon and are feeling better. I have had a DVT and PE's which were put down to having RA and am Celiac too . I have been told that I have pANCA which is something to do with antibodies and try not to overthink it. I can't change the gene's I was born with so worrying doesn't help it just concentrates on the negative. I know it's really hard but you will feel better in time and it does sound like you have some nice medical professional helping you. Which is really good news.
Thank you Medway-lady for your reply. After having RA i became Coeliac now it seems other healths problems have stemmed off from RA. I had nothing before this, apart from being extremely ill when born with imperforate anus as a baby, which Colorectal surgeon and I thought I had got problems with. Its good to know least they will know how to treat. I’ve been fortunate up to now, my gp has been good.
Oh goodness Pamelah, that's a lot to take on board, especially in such a short time so it's no wonder you are feeling scared and tearful, but look on the good side, all the scans etc were done quickly and you have been assured by the consultant. Also, he is contacting your GP to do the referral so it's all underway. It sounds like you have a good consultant and in that way you have been lucky. Hopefully, your gastroenterology appointment will be just as quick. Take care and all the best, let us know how you get on. xx
I will do Springcross, hopefully gastroenterologist will be equally as good, I’ve been lucky up to now with consultants. I will let you all know how I get on . Thank you for your reply xx
Poor you with so much to cope with. It’s not at all surprising that you are having an emotional day, you’re still trying to process what has happened and what you’ve been told. Lots of sound advice on here, lots of support for you too so keep posting whenever you need to. I ‘hear’ your worry about RA and a possible link to your pancreatic problems: no doubt each Specialist knows what is happening to you and will communicate with each other if required but there’s no harm in mentioning your concerns to your rheumatologist, but I doubt if they can say either way what caused it. The most important thing is that you are receiving excellent care from a first rate team who have your welfare at heart! Try not to overthink things...your appointment will soon be here so maybe make a list of whatever you’d like to discuss. In the meantime, maybe a couple of Me treats!! Best wishes.
Thank you CallMeSunny for your reply, i hadn’t thought but will phone Rheumatologist department tomorrow ask if a nurse can phone me. I do have a appointment face - face that’s a few weeks away. It’s strange since diagnosed with RA I had problems also with kidneys they declined to 39 percent they said I was in stage 3 CKD they stopped anti inflammatory medication which I had been taking for many years ‘Celecoxib 200’, kidneys have picked up to 60 so I do wonder whether its related. I will start writing down, will know exactly what I’m needing to ask, thank you 😊
Golly me...you really do need to pin someone down to get things sorted. Good idea to write down all your queries especially as you might not be able to have anyone with you for the f2f. I had to laugh...the information from Warwick Hospital says, “We do encourage you to bring someone with you”, but in the next breath they state that “They will have to remain in the car”! Wishing you the best...keep us posted. X
Try not to worry. Some years ago a scan detected a tumour on my liver which the gastroenterologist said was benign. He said they can tell by the shape. I had surgery and it was not cancer. I hope it is the same outcome for you. I remember how worried I was at the time. All the best xx
Sorry Lizzie3, to hear you also had a worrying time! pleased you have come through which couldn’t of been a great time, it’s the not knowing. My Consultant didn’t mention anything about the size, only that it took a while but we got there. It’s the not knowing. I’d like to think I’d like to think I am a strong person but seems its one thing after the other at the moment, the sickness feeling 24/7 was given a prescription for anti sickness meds Ondansetron which seem to be a little kind with the side affect. For me also it’s the not knowing.
oh bless you, that is good news its not cancer, they might be able to take it out? now they now it wont spread, of course your scared, but keep it in mind its not cancer so it wont spread, and they are very clever people and its good news they found out whats causing all your problems, now they can sort it.
big hugs, keep strong xx
I’m so sorry that you’re having such a rotten time. My sister in law had a benign tumour removed from her pancreas very successfully so hopefully they will be able to do the same for you. This auto immune stuff is such a nightmare. Hope you feel better soon. Sending you lots of hugs and warm wishes. X
I am sorry to hear news about your sister in law, pleased her tumour is benign and she is recovering well. I will be happy once a biopsy is taken. I do know the tail-end of the Pancreas has no blood supply, I assume that is the tumour ? i have lots of problems with digestive system also with the colon not absorbing fluids, I’m hoping once this is sorted I’ll be back to normal.
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Oh I was so dreading appointment 🤷♀️
Then whose area of expertise is it, for crying out loud??
