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Private surgery

private surgery

was wondering if anyone has had to go the private route to getting surgery done relating to crohns, if it was in the uk or abroad and was it worth it?, looks as though its the only option left to me
 
Hi gmm, It depends on the surgery that is required. If it is emergency then going private will not make a difference, If you need the surgery done the NHS will provide it for you without the need to go privately.

Having said that, I was being treated by the NHS and was booked in for a resection. As I have private health insurance I had my resection done privately In the UK but only because I wanted the consultant (the same one that had been treating me through the NHS) to do the surgery and not a trainee surgeon - this was the only benefit from going private. It did not speed up the waiting time for me and I had to have it done in an NHS hospital as they wouldn't do the resection in the clinic as it is too risky as you need an ICU.

The benefits of private health is that you can get all the investigations required more quickly and appointment times with consultants are quicker and therefore speed up the diagnosis process. But if you need surgery then the NHS will provide it you shouldn't have to pay for it. Hope this is of some help, but every situation is different and therefore it is a hard question to answer, what surgery do you need?
 
hello archie
i was called on fri for emergency surgery but when i found out what they were going to do i refused, i have an area that randomly closes up on me from a previous op hemicolectomy back in 2003, it causes me pain and to not let food through so end up vomiting and losing weight, and i just want this part cut out and joined again and i know i should be back to normal or as near as i can call normal, but the surgeons want to take from that area to basically the end of that large bowel away as there is a sign of disease there too, so leaving me with basicaly nothing left or a bag, this is why i refused the surgery and came home, starting myself on pred again as they stopped the humira which was working brilliantly for me, so what im looking for is another resection at the same site as before to remove this rogue bit of intestine,since the surgeons wont do it thats why im looking to find out about private surgery costs etc
george
 
Hi George that makes total sence I would agree in going privately for a 2nd opinion I was very lucky to have 3 opinions before I had my surgery and I also have medical knowledge so was very well informed beforehand, what confused me was that 2 of the top surgeons disaggreed with each other which made it a tad confusing!!!

Basic costs for me through BUPA (but these may differ in scotland i'm in NI) were consultation fees (£120-180), CT scans were roughly £400 I had 2 private and 1 NHS, blood tests roughly £120 (although you can get these through your doc for free!!) and my ileo-cecal resection was roughly £1000 (£700 for surgery and £300 anaesthetics) which actually wasn't as bad as I thought it would be. Having said that I was treated in an NHS hospital therefore didn't have the hugh costs of the private clinic which can be appro £600 a day just for the privilage of staying overnight. I thought the surgery wouldv'e been more expensive but it really does depend on the type as I have heard of some surgery costing thousands and thousands!! I also had a mix of private and NHS treatment, investigations and hospital stays.

Hope this is of some help your best bet is to phone your local private clinic and ask for their price to see a consultant and if you can afford it ask him what he thinks about the surgery and cost. Hope this is of some help
 
archie, that really is surprising, i was expecting costs of around £ 7-10 thou as even a nose job is around 2-3 lol, i will start to look around and find out the ins and outs of this as ive always relied on the nhs for treatment before, the only thing ive found out here is if i go private locally its the same consultant and surgeons that do the work, so cant win here hahah, even insisting i had the ct scan even though i said no to the surgery, i just cant see the point of removing the large bowel just because theres 20% bad part in it, thanks again archie will start the searching to see what i can get
george
 
managed to get an appointment with my gp as this seems to be the 1st point of contact here to find out about getting the surgery done private, havent been able to keep anything down now for the last two weeks, so i need to get the process going quick lol, looks like aberdeen is the closest hosp to me for this, 90 mile away, so fingers crossed i can get rid of this stricture that has plagued me for 4 year now
 
Hi George, hope you don't need to get emergency sx after all if you've been really poorly for 2 weeks you might not have a choice unfortunately if I were you i'd go to A&E and get it checked out incase you have a complete blockage, I know what it's like waiting for a gp appointment even if your legs hanging off you still have to wait a week!!!

If I were you I'd still would push the NHS route though your entitled to a 2nd opinion and it might save you paying for it... those who shout the loudest tend to get more in my experience, I was lucky my mum came with me to all my appointments and she's very sharp so she questioned everything and made quite a few suggestions which helped!!! I hope you get better very soon
 
You might also be able to have a private consultation and ask to be put back on the NHS waiting list. Unfortunately one way or other no-one knows the outcome of any surgery as even if a surgeon agrees to the surgery you want they might find adhesions etc etc that require them to remove more bowel than what you hoped for, from experience they will (NHS or private) do whats best for you health wise which isn't always the same as what you were hoping for... sorry for the doom and gloom
 
heya archie thanks for that yep, seen the gp yesterday and he advised waiting to see what the cat scan comes up with and then have it out with the consultant and surgeon, as they seem hell bent on leaving me with a bag, and as im not the type of person to deal or put up with all its drawbacks it certainly isnt going to happen, when all thats needed is the hemicolectomy area needing cut out again to let food through, i must say though that the hosp has been great as regarding getting seen quickly , and yes they are doing their best for me, but i think i know my symptoms and how i feel internally better than they do at the mo as past experiences have taught me, really missing the effects of the humira but i think the pred as a substitute is starting to kick in, guess it a wait till the hosp give me a shout back if they havent wiped me off the books for walking out on two ops lol,
thanks again, george.
 
I'm the same as you I put off my surgery for months fight or flight and all that it's only natural it got to the stage that I think they thought I was refusing it against their advice, god knows what they were writing in my notes!!! finally I agreed as it was the only solution and they wouldn't reduce the pred any further until I had it done... I was very anxious about ending up with a bag and all my surgeon said to me was 'who does want a bag... no-one your not the only one'... very sympathetic, not!!! anyways I hope you get some answers soon and stay armed with knowledge as you say you know yourself better than anyone so keep questioning them the whole way and keep me posted x
 
hahaha, the notes yes i bet they would make some interesting reading lol,just for the comedic value hehe, ill certainly post back when i get to see the cons/surgeon again , yep, their standard reply to who does want a bag? must be out of a training book they think applies to every patient , i know myself far too well that i wouldnt put up with the hassle of bags, sticky things and the discomfort, plus all the other added extras,,, so ill play the waiting game and see what the outcome is if they contact me again
thanks again , george.
 
Have you done an MRE scan? a CT scan doesn't give as accurate info as does an MRE - which is the most accurate (and radiation free) scan for Crohn's, both the small intestine and the large intestine.
 
not too sure. had a few diff scans the past years cant remeber one called an mre though there was one where blood was taken looked like gallons to me, and then radiated and put back into me then scanned an hour later, that was 3 plus year ago i think
 
An MRE involves drinking about 1 liter of fluid (water with some sugar in it), and then an MRI scan.

They don't have many of them in UK as its expensive equipment. But it gives a much clearer picture of what needs to be done surgically.
 
Hi George well I just had my review app with my surgeon today and I happened to mention to him how cheap my surgery was... he informed me that it wasn't £700 more likely £7000 and must've have been a mistake from the insurance company so sorry for the bad news :(
 
no prob archie i was thinking thats one hell of a bargain surgery lol, but as the gp said it would prob end up at the min £5 k mark, the pred has kicked in and im back to eating and keeping food down again for how long this time who knows, doing not too bad apart from the odd gut pains, ill get there
george
 
well, loks like they didnt wipe me off the books as i thought after walking out on two energency ops,lol, seen the consultant and he's gonna contact the surgeon to see about maybe taking the narrowing out doing kinda ok on 7 x 5mg pred but that just about holds the narrowng open fingers crossed i can get rid of this rogue resection and get back to normal eating and get some weight back
 
looks like i wont have to go the private surgery route just yet after seeing the consultant again, but still in a bit of a dilemna as the surgery to take out the piece thats flaring up and narrowing isnt as straightforward as id imagined ,the hosp made an appointment for me to see the stoma nurse, which i told them was a waste of her time, showed me what was involved with one etc,, and given some box with bits and pieces inside it to try at home lol, needless to say its still in the boot of the car ill return it on the next appt so someone can get the benefit of it, lol, seems that if the surgeon doesnt like the join he makes and thinks it needs a rest, ill be left with a bag or else the new join and the area at the tail end will be under too much pressure and cause serious harm so it seems if they operate the decision is out of my hands, as to the outcome , as i wont accept a bag at any cost, and feels like im putting pressure on the surgeon to do something against his will to do his best for the patient, so its an appointment on the 25th again to see what happens next surgery wise
 
after seeing the consultant again , seems they wont operate to take out the narrowing at the original hemicolectomy site, so its back to being on a feast and a famine as only 35 mg of pred seems to keep the area open for a few weeks at a time till it decides to close up on me. their reasons for not operating , or rather operating and leaving me with a bag now seems to me to be a way of an easy option for them and getting rid of a " high cost"patient, but im damned if im giving up three quarters of good large bowel to suit other peoples wishes or ethics
 
Hi what a dilemma I can't understand why another resection would lead to a bag unless something went wrong in surgery or there just wasn't enough good bowel to reconnect but they must have their reasons. Is it definite that you would have a bag or are they just giving you the worse case scenario? Have they discussed other medications to treat you other than pred to try and help?
 
heya archie didnt expect a reply this late, been on everything else tablet and infusionwise, what i was told is that the areas at each end of the large bowel, the one that keeps flaring up and closing at the hemicolectomy site if cut out and joined again will affect the area a foot up or so from the tail end and cause it to go septic and end me up in itu with all sorts of problems hence the bag, if thats the case why isnt it happening now ? when the pred does its job and lets food through and im what i would call passing everything near solid, and able to get out and about for a few hrs just cant see the logic in it, or the reasoning that im asking the surgeon that if i cant be joined up again to sew me back up and ill carry on as i am, is putting pressure on him to not carry out his duty to do the best for the patient, ie me, the other op was to leave me with a short bowel by joining the small bowel to the area below the affected area at the tail end but id be no better off with that than i am at my worst id have thought
 
Hi again I'm not usually up this late but had a 'dodgy' tummy which is now keeping me awake ironic hey!!!!! That certainly is a dilemma nobody wants to end up critically I'll and in itu post sx, but it sounds like the docs have done their research on this one. Would the bag be temporary? Can u get a 2 nd opinion sorry your having a rough ride at the mo but if all meds have failed then sx might be the only option as longterm pred isn't the solution. Ru in a lot of pain at the mo? Or having any other symptoms? I suppose it will come down to weighing up all the pros and cons. Is the consultant encouraging u to have the sx?? Or wait and see
 
Through a job I had private health insurance cover & in 2002 had a laperotomy & resection done in a BUPA hospital. As far as I can see the advantages are a room to yourself, better food & a nurse thats more or less all to your self ( as in care) :smile:.
But gmm the process is pretty similar & you have very little say with the surgeon's. I asked him please dont give me a bag & his reply was something like "bowel surgery is very tricky & hopefully you wont need one but dont rule it out because if you start leaking then thats what I'll have to do". He also said that what surgery is required is dependent on what he finds when he got in there.
I think sometimes we may get the wrong impression & that because we go private we have a lot of say in what happens-simply not true. However the thought of a trainee doing surgery on you-fair play. Not something I'd want to hear if it was me & I can understand your want for a more experienced surgeon.
Hope this helps.
Rgds
Grant
 
gmm

I asked a top surgeon (a professor) to explain this to me - and he said they don't know the reason. But the data seems solid, that when you rejoin straight away, there is much more risk of relapse, then when you leave a temporary stoma for 3 months or so. I don't understand the logic but there you have it.

Is your stricture in the colon or in the ileum?

Did you try N-Acetyl Glucosamine for it, as in the British study performed years ago showing its beneficial effects in strictures?
 
heya hopefull, the area is the join between the small and large bowel,
heya grant the process is pretty similar & you have very little say with the surgeon's. I asked him please dont give me a bag & his reply was something like "bowel surgery is very tricky & hopefully you wont need one but dont rule it out because if you start leaking then thats what I'll have to do". He also said that what surgery is required is dependent on what he finds when he got in there.,,,,,,, yep that is what i was told but surley it is up to myself ultimatley to not be left with a bag as an end result? lol, as for the surgeon he's the top one here so i have no worries about who does it,

archie hope the tum is just a minor upset, even if it was a temp thing id still see it as a way of breaking me in so to speak as to what they want me to end up with, but im just not the type of person to deal with all the hassle assosciated with it, as i have told the stoma nurse consultant and surgeon on a few occasions and have asked them to make sure its in my notes
the pain at the mo is kinda bearable until the rotten bit decides to just close up and let nothing through then all hell breaks loose lolso its soup and saps for a week or so until it decides to open again and let food pass through
 
gmm, I suffered from structures for 20 years. If yours opens and closes, its definitely inflammatory in nature and possibly also in spasm.

finding the right anti inflammatory is probably the key. I once had some visceral manipulation done (Barral technique - its a manual therapy) which was very helpful in releasing spasms.

good luck
 
That's where I had my surgery the stats the surgeon gave me were 4% will require a bag after resection surgery of which approx 50% will be reversible. I told him I did not want a bag and he just said to me who does and that was that. If you get a leak then there is no say wether u get a bag or not as it would be inevidible. They have to tell u how it is or they would be negligible. Have they told you that you'll def require a bag if you have surgery have they given u any statistics?
 
hopefull
the pred is working but im trying to keep it at as low a dose as possible also it really works in reducing the trips to to toilet and allows me periods through the day to myself, ive been on it on varying doses mainly from the start in 1999as all else seems to fail
archie
thats the same reply they gave me , yeah, who does want a bag?, seems its a standard reply , even if it was for 3 months or so and they could reverse it i wouldnt be able to put up with it, just a personal thing, but the consulltant did say that "one day we will get you," lol, im seeing things in black and white as i normally do and cant figure out why if its just one area thats causing all the problems that was operated on before sucsessfully cant be done again, looks like i need to find a back street surgeon or a vet to get this bit cut out or d i y, hehe
 
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