Update on my unusual body!

[Aime]

Hi Folks, just an update on my unusual bowel layout. I had an endoscopy and I am now on tablets for gastritis, so at least other things have been ruled out, including the big C in the area covered by the procedure. I’m now awaiting an appointment for a small bowel investigation, which I gather involves an mri with some lovely stuff to drink and a couple of injections. After that, I’m hopeful I will have a map of my layout and be as “normal” as I can be again.

I had a couple of small lumps on my left hand side, close to the area of pain and I now have more of these on the left and some on the opposite side too. I have a telephone consultation with my haematologist tomorrow morning and a gp face to face, later on in the afternoon but I just wanted to ask if anyone else has experience of small lumps plus pain, plus gastritis? I also have a lot of inflammation of joints due to osteoarthritis. I’m just beginning to wonder if my excess in red blood cells could be related to the other two issues or are the other two related to one another? A lot of questions will be asked tomorrow!

Hope you are all as well as you can be. X😻😻

[Stevesmum42]

Morning Aime.I am sorry to read of your ‘unusual’ layout. I don’t post much these days but just had to say I hope they get to grips with your ‘layout’ soon.

I hope your appointments go really well to day, and that they continue to ‘ make sense of your internals. You certainly are a challenge for your GP and others 🤔that just makes you more special than we already knew.

With very best wishes Sandy xx

[Aime in reply to Stevesmum42]

Kind words, Sandy thank you. My GP thinks I’m very interesting and I suppose one bonus is, he is quite keen to see me.😻🤣 Hope you are okay and enjoying some summer weather - it’s chucking it down in bonnie north east of Scotland! Kindest regards Aime 😻😻xx

[Stevesmum42 in reply to Aime]

Excellent that he enjoys seeing you. Just tell you are conducting staff training by testing him.Hope your day goes well

Love Sandy xx

[Aime in reply to Stevesmum42]

Good thinking!xx😻😻

[Mazcd Partner MPNVoice]

Hi Aime

I hope all goes well with the appointments and that you get sorted out. Sending you lots of love and hugs, Maz x x x x

🥰

[Aime in reply to Mazcd]

Thank you, Maz. Hope you are keeping as well as possible. As I said to Sandy, one bonus of being unusual, is my GP’s eyes light up when I say I have another symptom. He gets so enthusiastic about my unusual tendencies but he’s a lovely bloke, really. I pity him, sometimes! Kindest regards Aime xx😻😻

[Bluetop]

Oh dear, but good to be able to rule some things out. I hope you soon get to the bottom of it. Good luck.

[amhann]

Hello Aime - just to say hope all goes well with your appointments today + you get some answers - would be good for you to know ‘what’s where’ but hope you don’t have to have too many intrusive pokings! Very best Anne-Marie xxx

[Aime in reply to amhann]

Thank you Anne-Marie. There will be more poking but has to be done, so will just have to keep smiling! Hope you are okay too. Kindest regards Aime x😻😻

[mhos61]

Hi Aime, wishing you all the best with your appointment today. Xx

[Aime in reply to mhos61]

Thank you. At least life isn’t dull! Hope you are as good as you can be. Kindest regards Aime xx😻😻

[Exeter21]

Hi Aime I suffer with gastric problems for years had all the tests. Learned to change my diet completely. Recently diagnosed with ET bought back acute problems even on the aspirin so I take it now with food at lunch . Omeprozole didn’t help settle it. Once on hydroxy it completely messed up my gastric problems. Suffered for 6 week s then taken off everything. I am over 60 so must go back on something if platelets rise in next appointment. However I will refuse tablets as all creating big gastric trouble. Since off it everything has settled to normal completely . I fear. I will have no choice but injections. But currently feel fit as ever whilst the medication for ET left me lifeless with really bad gastric pains. Julia UK .👍

[Aime in reply to Exeter21]

Hi, sorry to hear you’re in the “gastric” club as well. I can’t tolerate aspirin or any other anti inflammatory meds. The gastric upset is not nice, so understand why you don’t want to go back on tablets. Hope you reach a compromise soon. I’ve got my lovely GP in about 1.5 hours time. Poor man, he doesn’t know about all the bumps/lumps yet, only the original one. My appointment is for loss of grip in my hand due to nerve pressure, but I think bumps will have to take priority.

Kindest regards Aime xx😻😻

[hunter5582]

Definitely understand the "unusual" thing! I told my docs I wanted to be "The World's Most Boring Patient." One doc said "The ship has already sailed on that goal." My PCP just laughed. He made note of it in my chart for future reference. Love that doc!

I would agree that the issues you are having are linked. The Deregulation of the JAK-STAT pathway causes our bodies to make too many inflammatory cytokines in addition to too many blood cells. The excess inflammatory cytokines causes a host of inflammation related problems. I also experience GERD/gastritis and osteoarthritis. Various other inflammation related issues too. Controlling systemic inflammation is a key part of my MPN treatment plan.

Hope you get an answer to what the small bumps are soon. Wishing you lots of medical boredom going forward. All the best my friend

[Aime in reply to hunter5582]

Thanks, Hunter, very informative as always. The one lump/bump has now increased to quite a few, so I have to get answers today and I’m getting a bit nervous about the appointment. But what will be, will be…….! Kindest regards Aime x😻😻

[hunter5582 in reply to Aime]

Do please let us know how it turns out. meanwhile sending lots of hugs.

🤗🤗🤗🤗🤗

[Aime in reply to hunter5582]

Thank you, will do. Hugs gratefully received.x😻😻

[Aime]

Panic over. My GP thinks my lumps and bumps are just lipomas or such like and definitely not lymphoma which I was concerned about. Thank you, as ever, for your support. I don’t tell my family stuff until I have results, as I don’t want to worry them. When I was young, my mum, god bless her, had us all worried sick about every ailment, and I can’t do that to my hubby or kids. So thank you for being there, as I had to speak to someone about it, as I was worried. Hugs to you all, Aime xx😻😻 Next hurdle is the small bowel investigation, hopefully soon, so I can get back to “normal”, or should that be abnormal again! 🤣🤣