He thinks to continue with meds. She has a sinus infection! Hopefully will clear up quickly
I think Jaime's docs could use a little CBT! They don't seem to know how to deal with chronic illness either….&*))&^% morons!GRRRRR! Oxford just called J saying they didn't prescribe Gabopentin! They said it was GP and she should never have been on it! Makes me so cross that they clearly don't have accurate records of her last appointment or even what they prescribed!!!
Haha!! Made me laugh! :rof:I think Jaime's docs could use a little CBT! They don't seem to know how to deal with chronic illness either….&*))&^% morons!
Carol, her inflammatory markers are always normal! Have no idea about the others. No anaemia either. I think this is why Doctors are not taking this seriously, her bloods are normally fine. They still haven't done faecal calprotectin! GRRRRRRRHi Niks. I agree that she seems better off, but still she isn't good. At least she isn't vomiting poop. Now it is time for a realistic diagnosis. If Oxford doesn't stand up to the plate and test her some more, it is time to move on. Has she had a fecal calprotectin? What are her inflammatory markers saying (Sed rate, C-reactive protein)? Is she getting anemic? One thing positive about all this, is that you are getting an education about your daughter and her condition and you know a lot of things that don't work! <<Hugs>>
Well, at least this is something! Even if she isn't as sick as she has been in the past, she does have bloody diarrhea. She's symptomatic although she has been off of gluten for ages. She doesn't have constipation because she is off of the constipating meds. Try to look at things for what they are, and not what they aren't. Try preparing for her appt on Thursday with some of these things: She is doing a little better, but these are her current symptoms: 1._______2.___________3.__________... These are the symptoms that she started with: 1._________ 2.___________ 3. __________... These are my current questions:... Tests we'd like to have done now that she isn't stopped up:...(ie Fecal calprotectin, pill cam) Has IBD been definitively ruled out? and if so, how...Thanks Maree! It's not the same one though, so not sure why he has put that on her letter!
Jaime has just had a call from Oxford saying they have been trying to get hold of her for 'days' and want to see her on Thursday at 7pm after their clinic!?
Errrr, she has had no missed calls, strange that this is after my e-mail querying all the mistakes on the letter! Anyway, we're going to go, although not sure what they can tell her to her face and not on the phone! Strange !!!
Her next appointment is only a few weeks away, and at the moment she isn't anywhere near as sick as she has been!
Thank you! I will be looking at this right now! xxHi niks , I don't know if this helps , I paid for a private fecal calprotectin from oxford screening practice u can finbd it on the internet , it was 30 pound. I just wanted to kno ,and its this result that has pushed my docs to start more testing ! Xx
Kimberly, her coeliac bloods have always been NEGATIVE! She was diagnosed back in December with biopsies that came back with 'coeliac tendencies' These were not visible during her procedure, but were found in biopsies. In March, with gluten free diet these were completely clear, and no signs of disease at all. And yet still very sick in March! I also know that if there is extensive damage that it is clearly visible during scopes!Also, maybe you should call and have them run a celiac blood panel to get some baseline numbers. How extreme was the damage?
She has not however been tested for any other allergies. So you could have a point! I have previously asked, with no one thinking this was a possibility, but surely it's worth some tests to check?
I do appreciate and respect the sentiments stated here and it goes without saying that i wish more than anything that Jaime is never labeled with IBD but it does remind me of something that I posted a couple of years ago: :lol:He admitted that it is often hard to diagnose IBDs but they don't like to label people without concrete evidence.
Duh, don't you do crossword puzzles Dex?? Haha!!!How the hell?? I can't find what I posted yesterday...he'll, I can't even remember what I posted yesterday!!
How often is Jaime vomiting now Niks? If it's once a week, it's too much!
Lol I know! Dusty"s memory is incredible! .How the hell?? I can't find what I posted yesterday...he'll, I can't even remember what I posted yesterday!!
How often is Jaime vomiting now Niks? If it's once a week, it's too much!
I think you're right!!No worries , good luck and god bless u both xx I think t appointment sounded like so many I have had a bit of a pass off, I feel like there is a tick box culture in nhs ! And if u don't fall into bowel damage or bowel cancer then its ibs and deal with it until it becomes bowel damage grrrr xx
I definitely had times where things were better. Unfortunately (as I'm sure you can relate to) it's all relative, and things aren't really 'better' so much as 'less bad'. It wasn't until I got a bit of proper treatment that I realised all those times I thought I felt better, I just had no concept of what feeling well was. And even now my concept of feeling 'well' is still very different to your average person. I recognise that in what's happening with Jaime in that you're saying she's feeling the best she ever has when she's still vomiting every day - that is NOT acceptable and at the very least she should have more symptom management even if they can't tackle the root cause.Isgs, thanks for your message and thoughts.
Did you have times when you thought things were a little better and could cope with things? I know Jaime is not still back to how she should be, but she is coping so much better and just being well enough not to have to think about whether we should be heading to the hospital, or calling them, or going to GP is a massive step up for her! She's been so unwell since August/September last year. Symptoms started June last year. (Previously had similar and always had pain from 15 years)
I agree with you, I do think there will be more to come and then we will start fighting again. (I really hope not! I hope that what ever it was/is just clears itself - doubtful I know but surely not impossible)
I also think that her FCP tests will come back normal! Everything else with bloodwork etc does! But it would put my mind at rest.
Jaime has never seen a rheumatologist. How do they test for autoimmune disease? She has when really poorly had lots joint aches and pains and could barely get up or walk up the stairs! This thankfully didn't last long! She looked like an old lady!
Jaime has been admitted to hospital 9 times since last October. Once overnight the rest 5 - 14 days. At least 4 other times they wanted to admit her. This is just crazy and I really hope we never get back to that!
I really hope you get answers soon too! Sounds like you've had a real time of it :ghug:
It's a rheumatologist love fest!!! I agree with the above.Also in my experience rheumatologists are very understanding, empathetic, warm doctors who really want to help you, even if they don't know exactly what's wrong with you. I would never have been on prednisolone if it wasn't for my rheum. They are totally different to GI's who seem to want to put obstacles in the way unless you fit into a neat little diagnostic box, which few people do.
I think you are right about taking a break. She has an appointment on 2nd July, which she is wanting to cancel because she feels that there is no point in going, if she is doing a little better and coping!Might be worth watching the latest episode of 24 hours in A&E on channel 4 to see the extent of pain autoimmune disease can cause - young guy with behcets was on it!!
I live in Glasgow, Scotland. I got referred to a rheumatolgist via my GI at the time. I was being seen on private health insurance before I got kicked off and rheumatologist saw me once and took me on as an NHS patient at his hospital.I think you are right about taking a break. She has an appointment on 2nd July, which she is wanting to cancel because she feels that there is no point in going, if she is doing a little better and coping!
I did see 24 hours in A&E! What a horrible disease . It seems he got diagnosed at 18 while he was admitted in hospital. (I think the first time he was admitted) His main problems are joint pain, especially knees and legs.
Where do you live Isgs? Was it easy to get a referral to a rheumatologist? Were you referred for joint pain?