Some might of noticed I've hardly been on here for quite a while, work at SFS has been ridiculously busy with shows and staff holidays. Kind of lost my mojo on the cars again and even the garage build has stopped :sad:

 

I have to see the surgeon in 2 weeks as my specialist has said there's nothing he can do for me and the internal reconstructional surgery they did 12 years ago all has to come out and they can't redo it again as I have lost to much of my small bowel as it is. Gutted is an understatement, I'm not sure how I face this as before the reconstruction I had a tempoary fix which I hated and now this will be a permanent thing. I know this seems a little criptic but some people know my problems and should be able to work it out, at 38 this isn't something I want and my wife has had no experience of it either, its worrying how she and indeed I will feel with this. Took the step today to call the specialist nurses about counselling which for me is a big step as I 'don't do feelings' and usually do the pull yourself together speech but I know confidence will nose dive even if all goes well with no complications, just finding it hard to motivate myself about anything at the moment....

Good to hear from you Anthony:thumbup1:Keep your head up mate.

Good to hear from you- glad you had a nice time away

Well 2 months down the line after finding out about the op meant potentially it was getting close as the surgeon advised it was urgent so 3-6 months. So thought I'd give them a ring to see if there was any news as I figure it's better to just get on and do it so I don't go mad thinking about it. Well they had some news, it's now non urgent and will be 6 months plus !!! :angry:

Great so more months of cyclying high dose antibiotics, one type I can't take anymore as it makes me ill, they other gives me chest pains and the other doesn't keep one of the problems at bay. It's not like I've been on them for 18months or so already, sure that's good for me to ! Nice to see they still like to support the patient through emotional times :(

Mate, I feel for you... I had to have a very serious op recently - one of those ones that might affect life significantly - and to cut a long story short I was literally getting off the train in London on the day of the operation ( having psyched myself up, said the right things to my kids, family and friends and work colleagues... - if you know what I mean) only to be told the op was cancelled .... ! I then waited a week on tenter hooks whilst they rescheduled the op - only to have it delayed 3 months.... Absolutely horrible.... Having said that - once out of the bureaucracy and in efficiency of the administration and into the hands of the medical professionals it was a totally different story. I Can't fault the medical staff of the royal London nhs absolutely first class.... I'm sure you will be fine once you get through all he admin crap... Incidentally, there is a code of conduct that states the maximum that you have to wait for treatment, including the reschedule after a cancelled op... If they mess you around again you can refer to this and demand they fit you in.

Nothing else for it but to keep you spirits up in the mean time. Good luck!

Typical of the NH mate thats why so many people go private now.

Well 2 months down the line after finding out about the op meant potentially it was getting close as the surgeon advised it was urgent so 3-6 months. So thought I'd give them a ring to see if there was any news as I figure it's better to just get on and do it so I don't go mad thinking about it. Well they had some news, it's now non urgent and will be 6 months plus !!! :angry:

Great so more months of cyclying high dose antibiotics, one type I can't take anymore as it makes me ill, they other gives me chest pains and the other doesn't keep one of the problems at bay. It's not like I've been on them for 18months or so already, sure that's good for me to ! Nice to see they still like to support the patient through emotional times :(

 

So latest update- After 2 emails and 2 phone calls chasing we finally get an explination and tbh it is a fair one, just wish they'd told me last year when we asked!

 

Basically he asked when is suitable as I am the priority end of routine so won't wait ages BUT after the hiccup I stopped all my tablets whilst throwing toys out of the pram and started probiotics, this has helped things a lot. Usually within a week of stopping meds the pain came back but I'm 5-6 weeks down the line and not much pain although it's not as good as it was 4 weeks ago, I assume the meds killed everything which is why its ok so far. It isn't ideal but is bearable at the moment but I never know how long it will last?

 

SO, next questions do I just go for the op and be done while I feel ok... or

 

say no and gamble on seeing what happens bearing in mind if it goes wrong it normally goes very wrong! Am I just kidding myself it's going to be ok from here on in?

 

Really not sure what to do, I know I am the only one that can answer this ultimately but opinions welcome

Like you say only you can decide what is best for you as for the change in you since stopping the medication thats the 2nd time ive heard this now, a friend was on medication for something (don't know what) but she turned up at my house on a mobility scooter hardly able to speak, everything came out in a stuttered slur, well her husband stopped her medication and within months she was back to driving and talking normally, so you stopping the medication sounds like a good thing.

 

As for your decision i think you have to look at what scenario is going to give you a better quality of life, i wish you all the luck in the world and hope which ever choice you make is the right one for you :)

As Nicci said mate its up to you and all we can do is wish you well with what ever you decide. Its a very hard decision and hope I never have to make it.Good luck Anthony and keep us informed mate.:clover:

So latest update- After 2 emails and 2 phone calls chasing we finally get an explination and tbh it is a fair one, just wish they'd told me last year when we asked!

 

Basically he asked when is suitable as I am the priority end of routine so won't wait ages BUT after the hiccup I stopped all my tablets whilst throwing toys out of the pram and started probiotics, this has helped things a lot. Usually within a week of stopping meds the pain came back but I'm 5-6 weeks down the line and not much pain although it's not as good as it was 4 weeks ago, I assume the meds killed everything which is why its ok so far. It isn't ideal but is bearable at the moment but I never know how long it will last?

 

SO, next questions do I just go for the op and be done while I feel ok... or

 

say no and gamble on seeing what happens bearing in mind if it goes wrong it normally goes very wrong! Am I just kidding myself it's going to be ok from here on in?

 

Really not sure what to do, I know I am the only one that can answer this ultimately but opinions welcome

 

Ever wondered what happened with this, me to !

 

Been chasing since January and things went backward from Feb onwards, sent them about 5 emails of progress and the problems that have started. As usual no replies so sent one 4 weeks ago, polite but to the point. The secretary rings next day as says can't reply to emails, been busy, bed shortage etc etc. i can accept bed shortage and emergencies but thought I'd point out would a letter/call be unreasonable maybe along with an out patient appointment so at least I get some help rather than struggle on. So she'll get him to contact me.....

 

4 weeks later, oh there's a surprise... nothing. Called today to be told he's away now until July, maybe the co-ordinator can send out a letter for an outpatient appointment, should be ok for SEPTEMBER !! F**king joke. Told her not to bother, not interested and I don't want to be treated by him (not that I have been) any longer and will transfer to another surgeon.

not sure what to say there anthony its disgusting the way the NHS treat ppl these days

suppose just keep plodding along m8

and try and and keep healthy

not sure what to say there anthony its disgusting the way the NHS treat ppl these days

suppose just keep plodding along m8

and try and and keep healthy

 

I just don't get it, I know when I'm busy it might take me a while to sort stuff but at least its a car part not someones life I'm messing with. I've been frank with them about the problems and the fact we want to start a family and won't with an op looming but he obviously isn't bothered by that. I can't actually move my life on and am stuck waiting with no help or regard for my life or state of mind, the op is life changing and a big decision and he knows that!

How many surgeons does this secretary look after that she can't pick up the phone for 5 minutes, if she can't spare 7 minutes to send you an email to let you know what's going on?! Sure if it was one of her family suffering she would pull her finger out.

Mate ive just had the same sort of Shit from the NHS since jan this year,getting passed from pillar to post and no real progress:cursing:...In the end i gave them the middle finger and got my wallet out and called Murryfields (bupa)...had an apointment with a top consultant within 3 days and sorted within 10 days all fixed and better,2K poorer though but worth every last cent. I know what your going through is worlds apart from my complaint but iff you have floating cash stop counting it and get sorted mate and fvk the mess of the NHS as its drowning with none nationals recieving treatment that we should be getting. Goodluck;)

Had crossed our minds tbh but the 12-15k loan would be crippling.

It seems when you mention director of surgery you get an appointment in 3 weeks! Seeing him 1st thing in the morning, just as wekk I've hardly eaten for 5 days as things have suddenly got bad, last time this thing happened I needed emergency surgery last year. Just holding out on painkillers until tomorrow.

It seems when you mention director of surgery you get an appointment in 3 weeks! Seeing him 1st thing in the morning, just as wekk I've hardly eaten for 5 days as things have suddenly got bad, last time this thing happened I needed emergency surgery last year. Just holding out on painkillers until tomorrow.

 

goodluck mate and getting yourself sorted is top of the list i bet;)

Good luck Anthony you are having a rough time of it so hope all goes well mate.

It seems when you mention director of surgery you get an appointment in 3 weeks! Seeing him 1st thing in the morning, just as wekk I've hardly eaten for 5 days as things have suddenly got bad, last time this thing happened I needed emergency surgery last year. Just holding out on painkillers until tomorrow.

 

I hope you get the answers and support you should have had from day one....... hope it goes as well as it can tomorrow.....

Russ

Well that was helpful "we're really busy and things get moved back, we can't reply to your emails due to data protection"

 

Yes we know but would a letter go a miss! So we'll send you to a dietician, as for the abscesses we'll get you in to have a day procedure to stitch them to fix them for now, the other problem, you need the big op for that, the main op, um well we'll have to see when we can work out a date but we are really busy. Oh and you might have crohns not colitis as we thought so you need the op to take out the bits we put in.

 

Went to see the nurse after, "has he told younthe stictches will need renewing a few times?" erm no

The dietician needs to be a specialist one for stomach problems, I'd better check the letter they right for you.

 

FFS come home this afternoon and the pain has started again, not happy bunny now

Well that was helpful "we're really busy and things get moved back, we can't reply to your emails due to data protection"

 

Yes we know but would a letter go a miss! So we'll send you to a dietician, as for the abscesses we'll get you in to have a day procedure to stitch them to fix them for now, the other problem, you need the big op for that, the main op, um well we'll have to see when we can work out a date but we are really busy. Oh and you might have crohns not colitis as we thought so you need the op to take out the bits we put in.

 

Went to see the nurse after, "has he told younthe stictches will need renewing a few times?" erm no

The dietician needs to be a specialist one for stomach problems, I'd better check the letter they right for you.

 

FFS come home this afternoon and the pain has started again, not happy bunny now

 

This must be a bloody nightmare to live with mate....cant even begin to think of the stress your under trying to keep a job down too:(

This must be a bloody nightmare to live with mate....cant even begin to think of the stress your under trying to keep a job down too:(

 

Struggling with all mate to be honest, hence the "forum theropy" !

It does sound like a nightmare mate and so glad that I am covered by my wifes private health insurance that she gets from work as any issue is dealt with very quickly. Its good to talk about it so keep up the forum therapy just wish there was more we could do. Good luck Anthony:clover:

I've got a date for an op, well not quite the main one but they are at least going to get me a temporary fix. Bit like cable ties on a dift car lol

Basically there is a cavity inside that has infection in, it blocks and causes other problems that keep making me ill so they are going to run a loop of stitching through it all so it stays open. Not looking forward to it as it could be uncomfortable to live with but at least it's a start! So a week tomorrow I'm in for a general anathestic and some needlework

At least they are doing something. Lets hope they get your big op sorted out soon.

Good luck mate.