Why do doctors take so long??!?!?!?

[hannah-rose]

I know I should be grateful that I'm getting free (minus 2x £100 excesses) bupa healthcare but SERIOUSLY how long does it take for TWO doctors to figure out how to treat me??

I saw my colorectal surgeon three weeks ago tomorrow and he promised it would be well within four weeks that he'd contact me and hopefully two weeks, well now it's three weeks and not a peep. He said he wanted to do another examination under anaesthetic - surely he can just organise that and let me know when it is, and if he has any more ideas about how on earth to fix my stupid problem he can just call me in the mean time?

I could understand if it was the NHS but it's private healthcare! I'm paying for this! Can't they just get a shuffle on? I understand that it's a complex problem and as yet no medical professional has a bloody clue how to treat me but can't they just try SOMETHING and get on it already? I'm trying to get my life back on track after the shittest year I've had in my entire life and I just want things to get moving! I WANT surgery, i WANT drugs, I'd even WANT a colostomy if it meant I could go and fulfill all my dreams and ambitions.

I'm doing a CELTA teaching qualification in October (teaching english as a foreign language) and my dream is to go and teach abroad for a few years, and I'm beginning to get more worried that I'm quitting my current job to do this and at the end of it I'm just going to be unemployed and still have no idea when I'm going to get better. I decided to do the qual because I need to do something other than live at home and work a crap job I hate because it's making me miserable, and I know ANYTHING would make me happier than my current living/working situation but I just need to know what's happening with my health

I just want to go to hospital and stay there till I'm fixed.

Grrr

 

[archie]

Hi Hannah-rose give him a ring or his secretary thats what I do if need be, I'm also lucky enough to have BUPA and I've well and truly got my money's worth. Have you had any investigations yet?

 

[archie]

sorry ignore that last question I see you've had lots of investigations!!

 

[hannah-rose]

Ahh Archie, I've had many tests, more fingers up my bum than I care to think about (see I still joke through my pain lol). I think I will call him tomorrow. I'm getting quite stressed about it. In the back of my mind I think, wow, maybe they'll NEVER be able to fix it... maybe I'll never be able to do what I want so badly to do. And if so am I making a massive mistake? I'm finding it really tough not knowing what's going on

 

[archie]

It's horrible for you to be in that amount of pain def get on the phone tomo. You will hopefully get some answers soon even with private health it can take a while but at least you have it. My cousin had a perianal ulcer which took for ages to get treated correctly eventually he got sorted through the NHS but was lucky enough to get one of the top consultants. He's great now but like you had been in a lot of pain for months and months beforehand. I hope you get sorted very soon

 

[hannah-rose]

Your cousin? What was the reason for your cousin's ulcer - was it crohns? how did it start? what treatment did he receive?

Sorry for all the questions! I've just never heard of anybody in a similar position to me and seeing as no one has worked out how to fix it yet I'd love any info you could give me

 

[beth]

Yeah phone his secretary and remind them you are still waiting....

 

[littlemissh]

I agree, give them a ring and ask for an update on his plans so far.

 

[archie]

Hi Hannah-Rose I'm not sure of all the details about my cousin as he's quite a private person but as far as I can remember about 10 months ago he 1st said about the pain as he literally was unable to sit down but he had been suffering before this. He went to casualty and had surgery where the 'packed' it I think. Unfortunately it didn't work he was still unable to sit or work etc for the next couple of months when he eventually went back this time got seen by one of the top guys and had further surgery were the did something to ?? Both sides of the anal canal ( sorry don't know detail) he also had week of IV antibiotics and was a lot better. He currently is good (I think) they mentioned testing him for crohns but so far hasn't had any other investigations yet. Sorry I don't know all the details but hope this helps. Both surgeries were very quick less than an hr each I'll try and get more details from him next time I speak to him. Really hope u get sorted soon as he was in agony with it

 

[hannah-rose]

I just rang my surgeon - who had promised to contact me within 4 weeks - and apparently he's on annual leave for 2 weeks!!! So that means its going to be closer to 5/6 weeks by the time I hear! WTF?? I know drs need holidays too but he PROMISED he'd contact me. I rang my GI and left a message too, I'm getting seriously sick of this. What does a person need to do to get medical treatment??

Archie - that sounds terrible to your cousin. It does however sound similar to my situation so I'm fascinated as to what happened to him and what fixed his problem. I don't know if it would be possible, but perhaps If you mention to your cousin that you're speaking to somebody in the same position who's struggling to get treated he might open up..? I'm getting desperate and anybody who can help is apparently sunning themselves in antigua ffs.

 

[kate19]

hi hannah, i know exactly what you mean! i have a fistula and i saw my surgeon at the very beginning of april and am now waiting for surgery which he said i would probably have sometime in may. but its almost august and i still don't have a date!!! its so annoying not knowing! i'm going through the public system and i honestly wouldn't mind if i was waiting because there were people who needed surgery more than me or something like that but it just seems like i've just been forgotten about. why even bother mentioning anything about 'probably may' if its not going to happen??

i also understand what you mean about making plans/ not knowing about the future etc. i'll be finishing my degree at the end of november and have no idea what i'll be doing next year or if i'll even be living in this city and i want to travel but i really need to have everything sorted health-wise first. teaching english as a second language is such a cool plan!! i'm kind of thinking about doing that sometime in the future too. i know a guy who went to korea to teach english 'for a year or two' and ending up spending most of his time there for 7 or so years!

so yeah. umm that huge story probably doesn't help you much haha but i just wanted to let you know that i totally get where you're coming from and know how frustrating it is!!

i hope you hear some news soon!! X

 

[archie]

I just rang my surgeon - who had promised to contact me within 4 weeks - and apparently he's on annual leave for 2 weeks!!! So that means its going to be closer to 5/6 weeks by the time I hear! WTF?? I know drs need holidays too but he PROMISED he'd contact me. I rang my GI and left a message too, I'm getting seriously sick of this. What does a person need to do to get medical treatment??

Archie - that sounds terrible to your cousin. It does however sound similar to my situation so I'm fascinated as to what happened to him and what fixed his problem. I don't know if it would be possible, but perhaps If you mention to your cousin that you're speaking to somebody in the same position who's struggling to get treated he might open up..? I'm getting desperate and anybody who can help is apparently sunning themselves in antigua ffs.

i'll try and get more details x

 

[StarGirrrrl]

Wow for the NHS I would say typical, but not for BUPA!

 

[hannah-rose]

Thanks Archie, that would be fantastic.

I'm glad someone knows how I feel Kate its so hard not knowing, I'm a strong person and I can adapt to a situation if it's tough, but not if I don't know what that situation is! Its frustrating. I emailed my GI who is working with my CRS (got two consultants on my case, they're like batman and robin) and he's made me an appointment tomorrow evening where he's going to give me an update. I'm scared and excited. If he has anything to say at all thatd be a start.

 

[StarGirrrrl]

Hannah there is a new section of the Support Forum, just for us undiagnosed folk, if you'd like to stop by it would be great

 

[hannah-rose]

Heyyyy everyone a smiley happy post today.

Saw my GI doctor this evening and he gave me some good news! Hurruh, he is SUCH a lovely man, really, I can't say how nice he is. He's just, ah, he's so so lovely. Funny, kind, caring, honest and approachable. The man is a godsend. And hopefully he's on the right track and his treatment will work.

He's basically said that him and my CRS have decided there's more than a 50% chance I have perianal crohn's. It might seem weird to be happy that I'm being told I probably have a disease but I've been waiting 7 months for anything close to a diagnosis. I have to have another blood test to check for TB resistance in my body, I have so see a consultant dermatologist (harley street dont ya know) for a second (well actually *counts* fifth opinion), and I have to have a screening at the GUM clinic and be examined by the doctor there too. Now if everybody agrees that there is a more than 50% chance that my perianal ulcer is crohns related, then I can have a 6 week course of Remicade/Infliximab treatment (three infusions).

And if THAT works - it'd be a miracle.

 

[littlemissh]

Great news. How long will it take to get all that sorted and infusions up and running?
Sounds like you ended up with a really good gi in the end!
Good luck.

 

[hannah-rose]

He's the best I couldn't ask for a better doctor in terms of medical knowledge and compassion. I feel totally at ease discussing everything and anything with him, I feel he genuinely cares about me as a person, and I don't doubt his medical expertise for one second. Makes a change if you remember my first one!

I asked my doctor how long it would take to get my first infusion and he said so long as there are no hiccups it should be one month which i thought was incredibly quick, so I'm hoping it'll be a month to six weeks. Even so, brilliant news for the moment

 

[archie]

at last u've got some answers and hopefully some decent treatment. It's nice to have a consultant you trust. My original surgeon who I don't even attend now is always on email so I always run things past him which is great and so far he doesn't seem to mind!!. Hope you feel better soon.

I haven't had a chance to chat to my cousin yet but hopefully will see him in the next couple of weeks.

 

[hannah-rose]

Thanks Archie it really does make all the difference, doesn't it, to have someone you trust on your side.

It would be fantastic if you ran my story past your cousin, I'm fascinated to know whether our symptoms compare at all.

 

[kate19]

that's such good news! your GI sounds lovely and was pretty speedy once you managed to track him down. im so glad a plan has been sorted out for you! drs batman and robin came through haha
good luck with the referrals!!

 

[hannah-rose]

hi hannah, i know exactly what you mean! i have a fistula and i saw my surgeon at the very beginning of april and am now waiting for surgery which he said i would probably have sometime in may. but its almost august and i still don't have a date!!! its so annoying not knowing! i'm going through the public system and i honestly wouldn't mind if i was waiting because there were people who needed surgery more than me or something like that but it just seems like i've just been forgotten about. why even bother mentioning anything about 'probably may' if its not going to happen??

i also understand what you mean about making plans/ not knowing about the future etc. i'll be finishing my degree at the end of november and have no idea what i'll be doing next year or if i'll even be living in this city and i want to travel but i really need to have everything sorted health-wise first. teaching english as a second language is such a cool plan!! i'm kind of thinking about doing that sometime in the future too. i know a guy who went to korea to teach english 'for a year or two' and ending up spending most of his time there for 7 or so years!

so yeah. umm that huge story probably doesn't help you much haha but i just wanted to let you know that i totally get where you're coming from and know how frustrating it is!!

i hope you hear some news soon!! X

Thanks Kate yeah I've learnt you need to keep track of your own treatment and if necessary just email your doctor until you get the news you want lol. I'm thinking this is only cos it's private healthcare but if everything goes to plan and I get treatment in a month I'll be delighted.

Sorry I didn't reply properly before, I was on my blackberry and they have stupidly small screens for typing. Have you been chasing your surgeon about your op? May and August are indeed very different months! I had to wait 8 weeks for a colonoscopy on the nhs, it's crazy, I know loads of people need treating etc but it's still a crazy idea that if you're sick you need to wait so long for treatment.

You should definitely do a TEFL! I reckon I might end up deferring my course if this treatment gets delayed or doesnt work (am praying it will work). yeah I know people who've gone abroad for years and love it. It's stupid because I supposedly have perianal crohns its frustrating because healthwise i am fine to travel etc its just i cant go anywhere until this problem is sorted. If he said to me, well you'll need to always stay in England to have treatment, that would be gutting but I'd adapt my plans but at the moment I don't know what the next 6 months will bring.

Everything in my life seems to be on the up so I'm hoping I've broken my unlucky streak and everything will work out, one way or another, and I hope it does for you too!

hannah

 

[kate19]

i have called the hospital a few times about my surgery but i've only talked to the surgery booking clerk, not the surgeon himself or his nurse and she wasn't that helpful to be honest. however, apparently not last friday but the one before the nurse was going to talk to the surgeon about me. but i never heard anything back and then when i called the booking clerk last week she said she gave the nurse my message but the nurse was away sick and the surgeon was on leave anyway... sooo, i don't really know what's the deal with that.

the thing is, i don't think the wait is a public system issue in my case. i don't have a crohn's diagnosis but i developed a perianal abscess last year (probably just because of bad luck apparently) and this will be my 3rd surgery for it. for my last surgery the surgeon decided i needed to have an EUA and it was booked for 6 weeks time at the very same appointment. also, i needed a referral to a neurologist before my surgery which was sent through in april as urgent and it doesn't make sense that i would need to be cleared for surgery 'urgently' by neurology if i was going to have to wait for ages after. anyway, i'll just keep ringing them and maybe i'll get so annoying they'll book me for surgery just to shut me up? haha hopefully if i'll call tomorrow i'll be able to talk to the nurse who is super lovely and helpful.

oh, im from new zealand, by the way! i just realised it might seem like im from the uk with my public system talk haha but i actually live on the other side of the world

is the course your planning on doing full-time? hopefully everything will keep moving along for you and you'll have a better idea of when the remicade will start soon! i get the being able to travel but at the same time being kind of tied to wherever your drs are. i did go on a holiday in the pacific islands for a couple of weeks in summer but obviously theres a difference between a quick trip with a bunch of 'just in case' antibiotics and long-term travel plans haha. do you know where you want to go to teach english?

kate

 

[archie]

Hi Hannah well I asked my mum about my cousin as I can't get a hold of him and I got it slightly wrong he had a perianal cyst with a fissure which was removed and repaired and is doing well although that was his 2nd surgery as 1st didn't work plus the week of IV antibiotics. It roughly took a good 6 months plus to get the correct treatment and is doing well. He hasn't had any further investigations as yet but they did mention at the time that crohn's was a possibility. If I can get anymore details I'll let you know. Hope your feeling a bit better.

 

[hannah-rose]

i have called the hospital a few times about my surgery but i've only talked to the surgery booking clerk, not the surgeon himself or his nurse and she wasn't that helpful to be honest. however, apparently not last friday but the one before the nurse was going to talk to the surgeon about me. but i never heard anything back and then when i called the booking clerk last week she said she gave the nurse my message but the nurse was away sick and the surgeon was on leave anyway... sooo, i don't really know what's the deal with that.

the thing is, i don't think the wait is a public system issue in my case. i don't have a crohn's diagnosis but i developed a perianal abscess last year (probably just because of bad luck apparently) and this will be my 3rd surgery for it. for my last surgery the surgeon decided i needed to have an EUA and it was booked for 6 weeks time at the very same appointment. also, i needed a referral to a neurologist before my surgery which was sent through in april as urgent and it doesn't make sense that i would need to be cleared for surgery 'urgently' by neurology if i was going to have to wait for ages after. anyway, i'll just keep ringing them and maybe i'll get so annoying they'll book me for surgery just to shut me up? haha hopefully if i'll call tomorrow i'll be able to talk to the nurse who is super lovely and helpful.

oh, im from new zealand, by the way! i just realised it might seem like im from the uk with my public system talk haha but i actually live on the other side of the world

is the course your planning on doing full-time? hopefully everything will keep moving along for you and you'll have a better idea of when the remicade will start soon! i get the being able to travel but at the same time being kind of tied to wherever your drs are. i did go on a holiday in the pacific islands for a couple of weeks in summer but obviously theres a difference between a quick trip with a bunch of 'just in case' antibiotics and long-term travel plans haha. do you know where you want to go to teach english?

kate

Omg that sounds horrible, I know I'm so greatful for the nhs and free healthcare etc but it's easy to say that when there's nothing wrong with you, as soon as you get ill it's like, why do things take so frickin long! It's very frustrating and I feel so bad for you - you should definitely keep bugging them till you get it sorted! I work in customer service (it sucks) but the customers who kick up a fuss definitely get their problems sorted.

New Zealand! That's so cool hello from the other side of the world! *waves* the magic of the internet eh

The teaching course is a 4 week full time intensive course but after that you're free to go into the big wide world and teach english wherever you like. I cant wait for the Remi, I want it NOW, I'm just praying it works because if not I think I'm goingto be back to square one I feel like if my ulcer healed enough and remained that was and I could maintain my health etc I would be fine, because I had fissures for years and it didnt effect me too much, but it depends. If they told me I couldnt to this I'd be completely devestated.

Hannah

Ps archie, thanks for getting that info, so he had an abscess and a fissure eh? Hmm, I had just a fissure, or an 'ulcer,' really, when it got infected and got bad. I think if I had an abscess it would be more straightforward to treat*sigh*

 

[kate19]

don't feel bad for me! i'm okay the fistula itself doesn't cause me much pain, sometimes it closes and then it does but i go on antibiotics etc and mostly i'm all right. compared to some of the stories i've read on here i seem to be relatively lucky in that regard which i'm sooo grateful for.

i also called the booking clerk again yesterday and she said the nurse is trying to track the surgeon done asap but he's been on leave so that's why they've taken a while. which is fine, she was nice and promised they'd get back to me so i'm happy with that

and i'm sure you'll definitely be able teach overseas hannah!! even if you end up having to defer your course and delay everything for a while it won't be forever. i'll start sending happy-remicade-related thoughts to you now and by the time they reach england you'll be good to go!!

kate

 

[hannah-rose]

don't feel bad for me! i'm okay the fistula itself doesn't cause me much pain, sometimes it closes and then it does but i go on antibiotics etc and mostly i'm all right. compared to some of the stories i've read on here i seem to be relatively lucky in that regard which i'm sooo grateful for.

i also called the booking clerk again yesterday and she said the nurse is trying to track the surgeon done asap but he's been on leave so that's why they've taken a while. which is fine, she was nice and promised they'd get back to me so i'm happy with that

and i'm sure you'll definitely be able teach overseas hannah!! even if you end up having to defer your course and delay everything for a while it won't be forever. i'll start sending happy-remicade-related thoughts to you now and by the time they reach england you'll be good to go!!

kate

What does a fistula feel like? I'm really fascinated, is it just painful or leaky? I can't imagine it but I still feel sorry for you!

I'm glad the surgeon's going to get back to you, see I said if you bug people enough you'll get results

I really really really hope I get to teach I'm hoping you're right! Bring on the treatment. I've resigned myself to the fact 2011 is gna be 'the' crap year, but after that things can only get better. It only needs to heal up enough - I travelled with fissures before so i can cope with that. Thanks for the happy drug thoughts!

Hannah

 

[kate19]

What does a fistula feel like? I'm really fascinated, is it just painful or leaky? I can't imagine it but I still feel sorry for you!

i think its different for everybody but most of the time my fistula isn't really painful. sometimes, it's kind of achey i suppose?? i don't know how to describe it, it's like i can feel it but it doesn't really hurt its just not comfortable. although, if i sit in the same position for ages does start to hurt more. and yeah it leaks pretty much all the time, but not much just like a little bit of fluid. i just always have a gauze pad to catch anything. if it stops leaking though that's actually not so good because it probably means that the outside skin is healed but the rest of the fistula isn't so then i end up developing a mini-abscess which does hurt. but then it normally opens by itself and drains and sometimes i go on antibiotics and then the whole process repeats itself.

i think it sounds worse written down than it actually is! i just wonder what the people at the pharmacy think about the amount of little gauze squares i buy haha they've stopped asking me if i need help finding anything when i walk in now lol.

kate

 

[hannah-rose]

i think its different for everybody but most of the time my fistula isn't really painful. sometimes, it's kind of achey i suppose?? i don't know how to describe it, it's like i can feel it but it doesn't really hurt its just not comfortable. although, if i sit in the same position for ages does start to hurt more. and yeah it leaks pretty much all the time, but not much just like a little bit of fluid. i just always have a gauze pad to catch anything. if it stops leaking though that's actually not so good because it probably means that the outside skin is healed but the rest of the fistula isn't so then i end up developing a mini-abscess which does hurt. but then it normally opens by itself and drains and sometimes i go on antibiotics and then the whole process repeats itself.

i think it sounds worse written down than it actually is! i just wonder what the people at the pharmacy think about the amount of little gauze squares i buy haha they've stopped asking me if i need help finding anything when i walk in now lol.

kate

That doesn't sound too bad, I mean obviously it's not great but it's good it's not too painful and it doesn't stop you doing too much. I know what you mean about those gauze squares, I use them for my ulcer, mmm it's gross isnt it, I tried getting them on prescription but it was going to be £7.50 instead of 70p so my nurse just gives me them for free! I don't understand how fistulas form really, how can a tunnel develop between your rectum and just, another part of your body? At least it can be treated though I hope you get everything sorted soon, not long now for me with the Remicade

Hannah