Rant about changing gastros :(

[gibby]

Hey guys, well its been a while since i have been on here but i am so annoyed with the system i just want to scream!

I have had UC for around 17 years, and when i moved into the adult service (i was diagnosed at 8) i got a fantastic consultant and the gastro team were fantastic, i had some really hairy scary times and they helped me thru it every time. I still travelled to see them even though i moved to another city for uni and eventually work, becuase they knew me so well and i trusted them completely.
I took the decison (after speaking to my gastro too) to head across to New Zealand for a year to work, ( i am a nurse) of course i was really worried about having big flares so far away from home but i was put totally at ease and was told i was only an email away and i could always get in touch with my consultant or ibd nurse that way. Well i had a great time and only had two flares, one got me admitted for just a day.

I came home at christmas, and called the gastro dept to arrange a follow up appt, to be told to my sadness that my gastro doc and team are no longer doing IBD but liver stuff....i thought the day would come eventually but was still gutted, but was told i would get transferred to another of the gastros in the dept. I decided to just get transferred to the hospital in my city because the only reason i travelled back and forth was because of the team i had and realised i may aswell move my care closer to home.

Here is the annoying bit! i had to go to my GP to make the referral, and i had requested it to be done urgent as i thought i was getting a flare up. 4 weeks later and i am in the longest flare up i have had in many many years! i have been at the GP 3 times and called them more, and they dont understand the speed at which a flare can move with me, and have upgraded my referral to the hopsital but as yet heard nothing.

I have just finshed a oral prednisolone blast of 40mg for 5 days,with no result ( i havent needed to be on oral pred for a couple years), that was after asacol foam and predsol foam (which was nationally out of stock so more time wasted there) i have had really poor appetite, not really ate properly, losing blood and have started to get quite alot of back pain which i havent had before.

I feel genereally pants. and because i never went thru my GP with my UC before i feel she isnt as switched on as she should be and she isnt listening. I mean she even said that i musnt be that bad as i am making it into work! If she knew me at all she would know i am a but of a martyr and go to work unless i have a leg hanging off.....

but you know, she said the referral wont take that long, 2-3 weeks....great if i want to be sat a size 6 with a stoma bag...

but i am so upset at it all, short of heading to a&e which wont be fair as i dont feel i am that sick, but know i cant go on like this for much longer. i am used to calling my IBD nurse who would have me at clinic the next few days to get checked if she felt it, or helped over the phone with different meds. i havent seen a gastro since i got sick in NZ, where they had said my UC had progressed and i wasnt been maintained as well as i have been on my pentasa and aza ( i am on max doses of both) and said i should be seen asap...which is what i have told my GP to no avail..

So i feel i really need to be checked soon, cos i dont really know whats happening inside and how bad its getting....but i am stuck! How often can i pester the GP? She told me to come back in 2 weeks if i wasnt feeling better....is that too long? Or should i call the hospital and try and speak to an IBD nurse even tho i am not referred yet? Or go thru my old hospital? i am so stuck!

Raaar!
:depressed:
Ok, rant over!
Thanks guys x
:ybatty:

 

[imisspopcorn]

How frustrating!...my gastro always tells me to call if I feel like I am getting sicker!...He is a gastro, so he is totally different than a GP. Plus, I'm in the US......I say, keep bugging the GP. She may not get it....If you are really bad, it may be time to go to the ER. I hope you get some relief soon.

 

[Peaches]

If you know your body and know that it may very well be getting serious - I'd convey that to the GP and if they still don't get it - I'd head straight over to the ER, whatever gets you seen faster. I KNOW that if I didn't have access to my GI like you said you used to - I would have been in a world of hurt numerous times over the years.

 

[gibby]

Aw i know....well got emergency appt for the morning at my GP so here is hoping.......i need to put my mean face on! So used to having to just call my IBD nurse and get seen within days....this has been going on for four weeks now...getting ridicoulous...so yeah if nothing tomoro then ER by the sounds of it!always feel silly going to the ER for that tho, as i am a martyr and i still get up and function and work and dont feel like i am dying enough to go! Even when i actually am! i am blessed with a high pain and tolerance threshold! Grrr!

but thanks guys, your wishes mean a lot! Just a bit nervous and feeling rather vulnerable at the mo....never really been by myself with this thing before....ceratinly feel it know....well not with you guys of course!

But i think cos i have been always realtively stable in an acute way if that makes sense.....like i know i have been maxed out on my current meds, and know there is nowhere further for me to go on them now, but these are meds i have been on for 18 and 8 years....and takes a lot to have to change them! and to what?! But yeah, knew they wouldnt work forever!

Where do you go after pentasa and azathioprine no longer hold you?

and i dont want to have the surgery conversation again.....not had that for a number of years, altho its again something i know wont last forever.....but thought i would have a good few years more!

especially dont want to have those conversations in an emergency situation.....i wanted to kind of get to know my new gastro team first and trust them before making any big decsions! but at least the new gastro team.....whenever i get to them, will be at my doorstep instead of 60 miles away, and its a new chapter....who knows they may have a ******** regime for me! whatever it may be.....

thanks guys xx

 

[Crohn's 35]

Hi Gibby, has Remicade or Humira, been thought of for your UC? Pentasa is for mild to Moderate, you need something stronger to get yourself back on track. 3 weeks is along time, but if I ever get bad I go to emergency, being nurse you must know what that is like. Hope you get relief and soon, keep us updated.

 

[beth]

That's really pants Gibby. My thought would be to phone your previous IBD team and explain the situation to a receptive ear... It might be a new consultant there but at least they know you and they wont have many excuses to not see you sharp like. Or any of the crap stuff of not having your notes/etc so they can't do anything.

Otherwise, I'd be tempted to say the pain is overwhelming your medication, you are losing weight: ergo you need to be seen urgently as you have a long history of UC and you are very concerned it has progressed significantly. Even go to A&E.

If they dont/cant/wont see you in the next few days, call the PALS service. They are your advocates and the first line in making a complaint.

The next step might be to try methotrexate or if you are lucky on to the biologics.

 

[soupdragon69]

Gibby do you know the name of the consultant your GP has referred you to?

An option would be to ring their secretary and ask how far your referral is in the great scheme of things explaining your situation. Has worked wonders in the past for me.

Another thought would be to go private if you can just for the first appointment if it would speed things up then revert to NHS care again.

Hope you get some decent care soon. Thinking of you lots! ((hugs))

 

[gibby]

Hey guys, thanks for all your posts.....nurses are the worst patients so yeah i know what its like and rationalise how bad i am, but we have to have limbs hanging off before we would admit we are sick.......but i had my emergency appt at GP this mornin, so doing better..

So she took one look at me and asked how i had been eating, and when i said i had eaten just a yoghurt yesterday and some fruit then she said, ah, well i suppose i better call the gastro team and try and hurry things along a bit....ya think?

She got to speak to the consultant, who said that trying that pred blast last week wouldnt have even touched me.....that i really need a longer course to get it under control....which i nice, means i just had a week of steroid therapy for no particular reason or benefit....great....
...then he had told the GP there is no where she can go with my meds (like she said she might be able to do) cos i am maxed out on my top doses, that he will need to see me...again i told her that.
....so he has said that he will see me in the next couple days, needs to organise a scope, xray and things and whether that is just all day cases and he sees me at clinic or whether he admits me is another story, so waiting on a phone call from the gastro team to get a plan...on the plus side i have been signed off work for 2 weeks which is really odd..dont really know how to be off work sick!so thats just so they can figure stuff out, so gonna get some serious chill out time while i wait for the phone to go.

so at least i am in the system again! had to get this bad before i got in but at least i will def get seen soon.

cant help thinking this is the worst i have been in years, and would it have progressed this much had i been seen by and IBD team 2 weeks ago? Partly my own fault but when you are a bit out of sorts and a doctor tells you to wait for a week or two then you do that.....hmmm i have been far too cushioned by my last gastro team, not had to fight for treatment or anything really for ever....so HUGE learning curve for me.

but anyway....the funniest thing is, since i now know i am gonna get seen soon, its like my body has all of a sudden let go and had the worst pain and bloating over the last few hours! Its like miind over matter, i was convincing myself i wasnt as bad as i was and now i know i have a safety net again and will be seen i am actually really feeling how bad i am....wow...ouch...so on the sofa with my jimjams on, lucozade and the remote. bliss!

plus i stayed up til 2.30am this mornin, couldnt switch out of night shifts! maybe have a wee nap i think...

so yeah will be interesting to find out where they go from here, i can anticipate that my scope will be rubbish...and pretty sore if i am feeling this way too...but yeah, i have heard of infliximab therapy and stuff, was mentioned years ago but never really looked into it. I mean when i i went onto azathipoprine i stressed abuot that and it was the best thing to happen to me at the time, sorted me right out and got me steroid free for 3 years....pity that has stopped now, but 3 years is 3 years....

thanks again guys for all your support! looking forward to seeing this new gastro, and hoping he is even half as nice as my old one.....then i will be fine.

onward and upward!

yvon x

 

[Peaches]

Well...sounds like you are on the road to getting the right care (finally!!). Hopefully they will be great at what they do and be able to quickly figure out a new game plan for you as far as meds go. Good luck Yvon - keep us posted!

 

[gibby]

Wow, well i have spent the last couple hours in the foetal position in tears..how pathetic...and i havent really got much to cry about cos i have finally got somewhere i guess, not the outcome i was expecting, but i am still SO angry and frustrated at how the system works...

so when i last updated you guys, i was waiting for my newly referred gastro team to get in touch with a plan of action for this week. ....lo and behold i have heard nothing, no phone call, no letters no nothing....

still not eating (had a handful of blueberries and a bite of a pancake in the past 24hours) and got the horrible gurgly constant abdo pain and just ache everywhere, my back especially,but on the plus side i dont seem to have passed any blood recently but havent really passed anything so its all a bit off and a bit unusual for me. and i'm exhausted!

so i decide to take action and call the hospital, to get thru to the gastro dept where i am being referred to. Spoke to the secretary who said that there was no clinic appts made for me or no endoscopy appts on the system except a referral made back in january (the original referral made weeks ago) she said she couldnt do anything and that i had to call back my GP, which i did, well the receptionist, who then called me back ten mins later to say my GP had called the gastro unit and the secy will call me with some dates...

...so i wait an hour, and get a call from the ward, who said the consultant i have been put under is away all day and there is no action made at the moment, so will have to wait til tomoro morning til she speaks to him when he gets in. So based on that i will get a call and will determine when i get seen, but getting onto the end of the week, so likely i wont see him til after the weekend! dont think i can take it for that long! getting so exhausted and tired of it all....i mean if i hadnt called to chase them up were they ever going to get back to me? its just ridicoulous, i mean i could be sitting here going toxic for all they know and they just arent on top of it!

was so upset, and was even thinking about calling my old gastro team even tho i am not technically under their care anymore, but at least they knew me and knew that i never flare for 4 weeks! that something is clearly up! but thought it isnt fair, its not their responsibilty anymore and they would only tell me to go back via my GP, but just wanted to speak to someone who understood me!and all this stress and upset wont be helping either, but what do they want from me before they feel its appropriate to see me?

Oh i give up i really do....it doesnt have to be this hard does it??? Maybe i was so spoiled by my last team that i am just expereincing what everyone else has to go through to get seen...maybe its like this all over and i am just being pushy....i dont know! never ever had to fight like this to get seen by at least someone in a gastro dept in 19 years....just finding it hard i guess...

well will see what i get told tomoro....hope its good news! i could really do with some.

 

[gibby]

hey hun,


thanks... i did need a telling.....honestly i was just getting so frustrated with everything and don t know why i am being so silly.....i feel a bit better tonight, but your right, i cant go on like this, and think i will head in the morning up to the hopsital if i hear nothing....obviously if i get worse overnight i will go in to....dont worry i will be fine...but yeah, gotta get a handle back on my disease, i feel i have kinda lost control over the past few weeks and dont like it....it sucks...just want to be sorted again..

...my housemate had a burger tonight and it looked SO good....so that is my aim for next week

i will get myself seen to...its nearly midnight so gonna get some sleep, and by morning i should have progress one way or another....

...and dont apologise about being pushy...you do it cos you care...and thats nice

thanks hun x night night x

....gotta suck it up and sort myself out...no more moping or stressing....getting a mantra on methinks...

 

[gibby]

Weeeeeell i just got a call (finally) from the hospital.....ooh lo and behold it was consultant,no no that would just be too good...nah just spent time speaking to a registrar....thats who i have been waiting on all week to call me, like they arent busy enough?
but anyway, after some fighting with him, cos altho he sounds really nice, he seems to be able to diagnose over the phone, said i am starting to settle on my pred and the loss of appetite may continue for a while....thanks...
so he was gonnna get me in for a flexi sig next week and try and squeeze me in to a clinic the week after...
erm...no
so i kinda threw a load a rubbish in...like said should i be concerned about this new back pain, and the constant ache i have in my belly, and what i should do over the weekend if it gets worse (love registrars cos they are so easily scared)

so he rethinks, and wants me up at the gastro ward tomoro mornin so he can see me after rounds.

marvellous....

doesnt help me today tho, but at least i have a start...

phew!

 

[gibby]

Ha ha....he did sound rather nice....and when i checked his credentials (oooh matron) he only graduated in 05.....so mmmmmm young man....

...so yeah if he is hot hooray.....however not so good when he is doing a PR exam on you, at least with my old gastro i didnt care if i looked like crap...while he was examining my....well you know.....

 

[soupdragon69]

YAY GIBBY!

Well done!

Have been there in the past myself. Totally understand how draining it is on top of how you feel already.

Very pleased they are FINALLY getting their arses in gear!

Keep us posted on how you are doing!

((hugs))

 

[gibby]

thanks soup for your support! yay for NHS....well....maybe not just yet, wil see what tomoro brings....i always find that tears work well for scared registrars...

 

[gibby]

well got to go see my lovely young registrar man yesterday....who thank the heavens is NOT a spunk...dont know how i would have coped if that was the case, but he basically got me into an office and said.....i dont have ANY details on you, i dont know you or your disease, neither does your GP by the looks of things, so lets just start from the beginning....

....so i did....19 years of history crammed into half an hour! But was good, voiced alot of concerns, and he felt my tummy but that was it really, no PR or xray or anything....only had a bit of tendreness so he wasnt too concerned, as for the pain and no appetite he basically said he would hope that would resolve in the next week, because i had been flaring for so long he said it would take a while to get back to normal...just said to drink plenty and get as much into me as i can bear...
and take omeprazole for any heartburn caused by the pred...

he also was very honest in his feelings about the GP prescribing me a 5 day blast of prednisolone, basically said yeah it would work if your an asthmatic but that wasnt the problem, and doing that would have made you feel better for a bit then crash back down again....usless, just usless! made me giggle a bit.....used a few choice words....

also said that he just cant move me any quicker thru the system...said once i am in its so much easier, ie getting clinic appt and access to IBD nurses etc, but getting that initial referral seen to and with my complications he couldnt really move much around, which is why he asked to just see me on his ward as a clinic appt will take weeks...and still will!

so not able to get a scope til friday, a week away! nearest slot...and obviously got the full prep for it, but got me on a nil by mouth pre op prep before the procedure which i havent had before for a flexi? usually just rocked up and got an enema and away we went......he didnt say anything about doing a colonoscopy just a sigi but unless he wants to convert to that? or even if he seen something up there to maybe take me into theatre? he was quite cagey over that info...so not really sure if i am reading too much into it.

but anyway that is where we are now.....basically need to hold tight and just keep going and functioning on half power til friday...

still frustrating but at least i have a face to go to now, and if i need help i know i can call the hospital instead of my usless GP...he almost hiinted at the fact that had i maybe appeared at A&E then i would have been thru alot faster....stupid system and its stupid policies...

guess i have just been so spoiled! taking it really hard! with my old Gastro i would have been in contact with IBD nurses, consultant the next day and on the list for a flexi sig the next day....interesting for two hospitals to be so different only 60 miles apart....

anyway, thanks guys, thought i would keep yas updated....

bak to sitting in front of the telly....never been off work really with this is years so finding it hard to find things to do,involving low excertion! feel like a 90 year old drained of all energy! changing my bedsheets this morning felt like a marathon when i was done! phew!

gibbx

 

[gibby]

ah that started out here a couple weeks ago....not really got into that yet...

been mostly watchin greys anatomy and reruns of scrubs.....need to get away from the hospital theme there....

but ach we will see how we get on.....i miss shortland street, got really into that in NZ, dont really know if they show it in Oz but yeah, a pretty sad admission....

gib x