Hi Guys, sorry I need a moan and I know I should be grateful it’s not the big C but I had a CT, following ultrasounds and pain under my left ribs. It turns out my intestines take a different path to the norm and have some collapsed loops, which I’m grateful to say, are not causing obstruction as yet. In the past I have had a few episodes of appendicitis but my appendix is in a different place to a normal person! My GP says I’m a very interesting patient and sounded so enthusiastic! I’m not!
I have an appointment with a surgeon next week to discuss my “layout” and to find out what problems it’s going to cause, if I need anything done now, or is it a watch and wait!
Sorry to be a moan. I was expecting them to say something about my spleen or pancreas, which I know could have been a lot worse! My bloods are fine though, so something to be grateful for. Sorry - I know there are a lot of folks a lot worse off than I am, but just had to speak to someone.
Kindest regards Aime😻
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Never apologise for having a moan! It's bound to be alarming to discover that that something is not quite normal and it can't be helpful to be described as "interesting" in that context. We are all here to support one another, whatever our individual concerns.
Hello Aime - you go ahead and have a good moan (cannot count the times you’ve propped us all up + given support) - I’m glad you are getting ‘investigated’ - know exactly the feeling of just wishing the ‘world would turn + just leave us be’ - sending big hugs to you. Anne-Marie xxx
You go girl have a good moan, thats what we are all here for. Its one thing having an MPN which is rare in itself, let alone have your insides in the wrong place as well, just seems so unfair, wonder what they will do, especially as you went in regarding your spleen and pancreas. In a way they are OK as are your bloods, but to find the rest of your insides are in the wrong place can understand why your doctor found it interesting although for you a little daunting.Keep us informed Aime.
Thank you, Jean. I will let you know, appointment is 12 May. I will be going armed with a load of questions. Hopefully, it’s just a watch and wait! I did the wrong thing by using Dr Google but needed to have some more understanding of my problems. When my GP phoned, I was so gobsmacked, I couldn’t think of the answers I needed. I do realise now, it could be worse as there are no signs of tumours or obstructions so far.
I hope everything goes well, yes it could be worse but what you have is definitely worth moaning about! No wonder the doctor was excited! Best wishes X
So sorry for your troubles and it can be good to moan. The one thing I would add is, if you go for watch and wait, is to ask the consultant to write a letter to ensure you get urgent care if you do get an obstruction. My wife has Chronic Pancreatitis and some on her support site have suffered terribly or even died through ER ignorance. Kind regards Steve
Glad you feel free to share your situation with others .It feels good to off load doesn’t it. Good luck with your meeting, here’s hoping that whatever has to be done is successful and not too invasive .
Moan away. It sometimes helps to moan or share your experiences with others as I find it helps in subconsciously putting things into perspective and order in your own brain. Hope all goes well.
Moan away Aime it sounds as if you have good reason. Interesting indeed ! some of these Doctors talk as if you should feel proud ! I know myself what it is like to be told you have another reason besides your MPN to come in and see us here in the Hospital. I have been recently been diagnosed with a pre cancer skin condition to keep my PV company. Attending the Dermatologist later in the month to discuss options 🤔 . Ah well onwards and upwards as they say.
In the meantime Aime I hope all goes well for yourself and your "layout" and that it will not cause too many problems for you. Keep well and safe Aime.
Thank you guys. Your words mean so much. I do feel better now I have shared, thank you for being there. My hubby is aware but I haven’t told my kids (36 & 38!), but will tell them if anything needs done! I will keep myself busy and stop googling! Xx😻😻
Understand completely! Had a very interesting and rare benign but aggressive spiral tumour deep in my breast. Surgeon and radiologist said never and looked at me like a delightful specimen. I moaned, why do I always get the rare things? Surgeon answered, some people just grow weird stuff and you're one of 'em! I was in Texas, of course.
So sorry to hear that. I hope you are recovering and everything is ok. Yes, my GP is lovely but he is so enthusiastic when he finds something unusual! I’m the same - why have I got to be medically different! Take care and thank you.xx😻😻
This is the place to moan, so no worries there. It’s always stressful to hear that we might have another health issue to deal with. I’m glad you’re getting another opinion from the surgeon to see what the next steps are. Good luck and sending hugs.
Sometimes you just gotta moan. I know I wouldn't want to have an 'interesting' medical condition. I hope that now that you know you have a different layout, any potential problems can be avoided.
Oh brother. Like having a MPN is not "interesting" enough! Like the ancient Chinese curse "May you have an interesting life." I told my docs I want to be the world's most boring patient. I was told "The ship has already sailed on that goal." Rats!
Been there and done that with GI issues too. One of the bigger challenges is ensuring integrated holistic care when involved with multiple "ologists." It really is up to us to ensure we receive integrated care. Collaboration does not happen on its own. We have to be our own care managers to ensure it happens.
Hey Aime , , you're more than entitled because I and many others on here have benefited from your advice, support and encouragement throughout these past few years so it's only right we should reciprocate. It's a real drag when you think you've got your ailment sussed and actually you're proved wrong. Please don't despair because it may only affect a tiny bit of your intestine which in total is around 15 feet in length so lots to spare 😃. Of course im being a tad flippant but it's good that there is no obstruction in there which needs immediate attention.
On the plus side your bloods are good and if you're anything like me you will worry about how your counts hold up every clinic.
Hi Aime, you moan away my lovely, as the others have said, you support many people on this forum with your kind words and wisdom, so we don't mind at all that you need to have a moan. I hope you get this sorted out very soon. Lots of love and hugs, Maz x x x
That’s not moaning it’s sharing. It means we can all feel safe here. The unexpected and the unknown are always the hardest to take. However its great that you’re ’different’ the doctors will take far greater care of you. Every good wish Paul
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