Gastro update

theresa4

Firstly sorry for my lack of attention I have been on but my mobile still wont sign in and the home net connection is hopeless I do pop on regularly and do wish you all well, and hop in pockets for [pocket duty, and send ((((())))) when required even if they are not sent cyber they are sent mentally. PS rash on face is not measles so dont worry about the spotty one in pocket duty :oops:

Ive just had my appointment with my consultant gastro.
He was really nice, although the sigmoid and colonoscopy showed nothing he feels there is some inflamatory bowel as when I have steroids its calms down. Ive now to have an endoscopic camera swallow (one of those mini camera capsules) and another test on bile???

We discusssed everythign my RA, thyroid, medications,and bowel and the fact that as Im on MTX and biologics that could be why it is calmer than it might be if not on them and that could be why Im not losing weight when I could possibly have chrohns??? why nothing showed on oscopy...and we even had a laugh about it all :shock: . He let me ramble on about this and that and seemed really interested in what I had to say. A really positive appointment although I still dont know anything more. I actually expected to be discharged from gastro today. Wish all docs could be like this!! especially the B**** on Tuesday!! in rheumy clinic.
and Monday is hospital for gynae scans so Ive done 3 hospitals in 3 working days by Tuesday next week :shock:
On the Tocillizumab episode Ive still got the rash on my face and arms, it calms down after my anti histamine for most of the day but come evening it flares up so I assume it just isnt strong enough for the whole day. :?
But it is a really strong one.
Hey ho ...
Well off to see friends down south for the weekend my OH feels I need a break from all this hospital etc.. and my mates will cheer me up despite the red rashy face.

Theresa

pinkbritishstars

Hugs Theresa xxxx

stickywicket

Hey theresa, leave a few appointment slots for the rest of us

I'm glad it was a good one and I hope Monday's and Tuesday's give you a pleasant surprise.

Enjoy your weekend.

ironic

Hi Theresa,
Well that is wonderful to actually get a consultant that listens to you. Makes all the difference doesn’t it.
Glad the rash has eased a bit I wonder if the heating at night brings it out more.
Good luck with the appointment next week too. I hope you get some answers soon.
It will be good for you both to get away for a couple days, relax when you can and have a lovely time.

I x

bubbadog

Hey Theresa, I guess I'm the expert on the oscopy's after having the endoscopy, sigmoid & colonoscopy's 3 times each one in 2yrs!! And my consultant said even though you might not see anything on them it's not to say there maybe a problem in your small bowel or stomach which would mean surgery to find that out. So that is left to the absolute last think to do. Every time I've had colonoscopy they have taken pollups from my colon area, as I'm prone to them?! I would advise when you have the endoscopy I would be sedated I have been sedated all 3 times, it's better than being awake.
Hope they get to the bottom of your gastro problem. (no pun intended!)

woodbon

HI, thats really great that you'v had such a positive appointment. When the doc is interested and wants to know all about your condition, even if they can't do a quick diagnosis, at least you feel that something is being done and that makes you feel more positive about the condition!

dorcas

Hi Theresa

So glad you've had such a lovely consultant looking after you.... it does make such a difference doesn't it?!

You've had such a lot of investigations.... and more to come :shock: I do hope that they find out what has been causing the symptoms so that you can get appropriate treatment.

Masking signs of disease, I'm told by rheummy, is certainly one thing the Bioligics do..... so it can make diagnoses more difficult. Good for you managing the 'oscopies' .... not pleasant experiences!

I hope your gynae and rheummy appointments go well...my fingers are crossed too!

Iris xx

theresa4

HI All
Many thanks for all your replies had a lovely weekend away except sunday when my bowel kicked off again I looked 20 months pregnant with triplets :shock:

Bubbadog Im not have endoscopy its a mini camera you swallow and have a reciever to collect data from the camera as it goes down the digestive system. I would definately have sedation otherwise as the idea of somethiibng in my throat ....no way...

I downloaded an app that does chronic pain diary with loads of extras on it, I can print graphs and the diary pages for my doctor and pictures of rashes etc.. so Im giving her that tomorrow. Its good for me too as I can see what ive been like during a whole month it has a traffic light system which is clear on month view how many red, amber and green days (well I assume it shows green as mine hasnt been good enough yet)

Will let you know how I get on tomorrow

Thanks again for the support

Theresa

julie47

Sorry I am a bit late here theresa but I am pleased your appointment with the gastro went well and that he listened to all you wanted to say.

I wish you well with all your forthcoming appointments too.

Take care
Juliepf x

mig

Thinking of you and your next appointment.Mig

theresa4

I shouldve known I couldnt have 3 positive appointments

Along with all the other problems My blood pressure has escalated since the infusion 151/101 (known side effect of infusion too) but.....


Now its my thyroid causing the rash outbreak and the heartburn and the bowel problems despite it being stable for 12 +years

Despite my having no symptoms until the day after the infusion
but lets keep that quiet as we dont want to give the infusion the bad name!!! thats what I was told by the registrar. Guess what Im back to maybe having something other then RA???????


This all including the fact that all symptoms go away with a steroid injection (well the bowel and the joint pain and stiffness) says otherwise, if it was my thyroid the steroid would have no effect as the Gastro guy said.

I am to now be seen by a skin specialist for my rash before I can have another infusion so it is on hold for now. The worst thing is the last 2 days my joints have been a lot better so it may have been working :x so now Im in limbo wwaiting on thyroid blood results and decisions from a team who have no faith in me as an informed patient.
I know my body and I know its the infusion Ive reacted to unless its some amazing coincidence but it does seem strange that Ive had these same symptoms before on another 2 biologics so I doubt it. I want to give it a go as I think its helping and try to manage reactions but it looks like Im not getting that now.

I feel so upset by all this its really not fair, wish I knew why my body keeps reacting to everything
The consultant I dont get on with was in a meeting so I didnt see her which was a good point. The registrar whom I saw, stated he was trying to get a good picture of me as he had never met me before ( i pointed out Id seen him at least 3 other occasions :shock: ) nice to know Im memorable. The nurses up front know exactly who I am from doing weight and blood pressure checks and any problems Ive been having. And the nice rheumy knows me from 2 visits. Really dont like the impersonal biologics clinic at all I seem to spend most of the time repeating whats wrong and what meds Im on, just once it would be nice for them to actually read the notes infront of them and follow up instead of treat me like a new patient each time.
Feeling very low and itchy ( i didnt take the antihistamine last night so they could see the rash and not accuse me of making it up)
I havent got measles honest :oops:
but I have got a throat infection
Theresa

stickywicket

That sounds pretty disappointing and frustrating, Theresa. I'm sorry I can't be of any help as mine's simple RA and a combo of meth & hydroxy does it for me. I just hope you don't go backwards having to leave off the biologic.

mig

So upset for you,thinking of you, sending hugs and warm thoughts.(((()))) Mig