Long term aftercare - what is your experience and what are YOU doing about it?

[CCPM]

New day new thread, I'll be getting right up everyone's nose soon....but until then and others join in the thread starting I'm continuing the crusade.

My own experience has been that as a private patient at Chcihester if I wanted it after the first time I had to organise it. On the plus side I can go to anywhere he consults and see him for free for the first year but if I don't go no-one chases me up. After that no care has been mentioned.

No-one has mentioned blood tests or other checks. My research showed that its best practice over the pond to have a full blood screen bi-annually and for this to include tests for mineral deficiencies as some people have e.g. copper deficiency. Dexa scans to check for bone thinning are also fairly routine there. Now I'm very lucky I'm the business partner in a GP practice so I just ask one of my partners and they authorise the blood tests, Dexa scans are not arrangeable by GPs in our area so I'm booking this privately at 12 months, its very important for me I have severe osteo arthritis and early signs of osteoporosis so need to be aware if my calcium regime is sufficient.

I would however emphasise that bariatric surgery is for many GPs a term they know, but that their experience of it is low, its seen as a pain in the ass for many as its often termed 'a low clinical priority' by our paymasters the PCT and as such can be a nightmare in terms of criteria and effort for a GP. They know very little about aftercare or whats needed. My partners are absolutely amazed at whats involved as I bombard them with information as they are trying to be well informed on thie new and growing area which they see working before their very eyes. So your own experience might be very different and the forum is a god place to get this out and discussed to help people decide what aftercare they should get/feel they need in the longer term. I would argue we need it as the longer term complications can be severe if you are one of the unlucky ones and once more forewarned is forearmed.

Opening up yet another debate

M

 

[Lisa J]

Hi M, thanks so much for your input it's so nice to communicate with other people post 6 months. I must admit that without this site i'd be pretty lost! My aftercare has been ok, i see the dietician every 3 months and at my last visit had full bloods i will get the results at my next appointment at the end of this month, i did mention to her about a b12 inj and she said these were done quarterly after the op even though i was 6 months post op then and hadnt had one done?! I will ask about this again at my next app. I was never warned of any long term complications or problems that may accure neither was the reasons why i was on multi vitamins/iron/zinc/calcium for life, all this info was found by me on this website. My aftercare programme lasts for two years but i expect if i have any problems that i can get intouch with them. I personaly feel the scarey bit for me is seeing all the weight fall off and thinking 'this is great' but being unaware of what , if anything, is going on inside of me.

 

[hopelesscase]

hi m i saw the surgeon himself 6 weeks post op and see the endocrainologist 6 monthly. I have my bloods done a couple of days before in clinic so he has the results for when i attend.so at 14 months post op i have seen him twice. I have also seen the dietitian who discharged me but if i have any issues can phone him.

we also have a monthly support group and the baritric nurses and dietitian are there so if i have any issues i can flag it up with them there and if they feel an appointment is needed will organise it.

My GP's are also very good they are a husband and wife practice and had been very intrested in my progress. I seemed to be bruising quite a lot at one stage and straight away it was lets check yr bloods check out yr B12 which was fine.

As an NHS patient i really dont feel that i could ask for a better package than what i have. i feel fully supported and know that this is a life long commitment from my team.

HTH
carole

 

[candie]

I'm just over 6 months post op, and have had 2 B12 jabs at the docs, but no blood tests anywhere yet
I will ask what the situation is when I go back to the hosp in Feb, cos I also want to make sure i'm getting the right nutrients

 

[Mark01/05/2009]

I went privately and did expect to be chased up following my surgery for blood tests and to see how my progress was going but havent heard a word from my surgeon since the day of my op.....

If i had experienced any problems I think I would have been more concerned by the lack of follow up.....

 

[phatgirl]

Here is what my surgeon's information sheet said when I was at my pre-op assessment:

Check-up 4 to 6 weeks post-op with the surgeon
Check-up 3 months post-op with team (surgeon if needed but otherwise with bariatric nurse or dietician)
Check-up 6 months post-ops with consultant & blood work to check iron, B12, etc.
Check-up 1 year post-op with consultant & blood work
Yearly follow-up with counsultant

What I have actually received:

6 weeks follow-up, didn't see surgeon but saw dietician was told you only see surgeon if you have complications/problems
3 month follow-up, saw bariatric nurse
7 month follow-up with consultant (no blood tests done, I requested my GP do them after I saw the consultant), recieved an appointment with consultant clinic that will be when I am 18 months post-op
Requested my GP do bloods at 15 months post-op to check all my levels
I do know that should I ever feel in need to see the bariatic nurse or dietician all I need to do is call. I also attend the monthly support group which puts me in the same room as the dietician & bariatric nurses should I need to speak to them.

All and all I think I have had excellent care even though I have had to chase it myself a bit, I know I have the safety net of a fantastic team. I will be asking my GP about the bone scan as I had forgotten about that particular test, thanks for the reminder M!

Nic

 

[CCPM]

Thanks to everyone for joining in with this and other threads. I do so want this to be a great section of the forum because if I'm honest I'm often scared to death about what I don't know and more to the point about what GPs don't know which I see at first hand. I virtually had to pin one of my partners to the ground when I found him handing a scipt to a gastric bypass patient for NSAIDs it was only because the patient had left it in his consulting room that he was trying to catch them and to save himself time gave it to me to pass on to the patient, luckily I knew this patient's history. The patient themself had not read any of the literature he'd been given. I didn't know who to tackle/smack first.

M

 

[shelbell]

Interesting thread M, and one I've been thinking about a lot recently as I approach 2 years post op and the end of my aftercare. I know that because my PCT subcontract out to Spire, there is no NHS bariatric surgeon in this area should I have any problems after the 2 year period.

My plan is to discuss long term tests etc with my dietician and surgeon when I see them in a couple of weeks, and ask them to put what is needed in writing to my GP.

I'll look in to the DEXA scans cheers

 

[Silversurfer]

My op was done privately and i've now gone beyound my 1 year after care plan, though i do still have access to the support group meetings and my dietician which i'm told is for life.
All my care now is down to my GP, who i have to say has infact been excellent, i'm his first bypass paitent and he's happy to talk through anything with me and listen, he's been forthcoming with prescriptions and blood tests, my last yearly set of tests came in high for some vits and between us we decided to reduce them, but with the back up of a 6 monthly round of bloods to check and re adjust if needed !

Thankfully i never had any issues or complications post op other than the normal eating difficulties we all go through, though i wonder how easy it would have been to have got an issue sorted out through my private consultant had i needed to, certainly i know of people who had had issues having had a bypass on the NHS and they have had to really fight to get noticed, infact actually thinking about it i dont know of anyone that has had an issue having had a private op !

 

[samsmum]

I was told that I have 2 years seeing the team at the hospital and then all care will be under my GP unless I have major problems where they would keep me on the books.

I have only seen a surgeon once in clinic to check my wounds. He was not a wls surgeon. I have not seen my surgeon apart from once in preop clinic. I did see his co worker who helped do my surgery before I went to theatre and after to check me over before I left hospital.

I am welcome to go to the hospitals monthly(ish) meetings at a hotel as long as I need. There is the specialist nurse and dieticians there to discuss any worries.

 

[Neen]

My band was done privately and I have free lifetime aftercare. At the moment I am due to pop to hospital for a weigh in and general chat to make sure all is OK quarterly. It's unlikely I will need a fill, maybe one more tiny one. I think I'm expected back every 3 or 4 months at this stage and then annually if everything is allright in the future.
Getting down to appointments is a problem logistically for me but they do email and phone if I leave it a long time or have to cancel, I'm pretty lucky with the aftercare.

 

[shazbrad]

Well where do i start i last saw a member of my surgical team in June last year, i had blood tests done but was not notified of the results so i rang surgeons secretary, and was told she would put results on his desk and if there were any problems they would contact me, no reply so i'm guessing there were no problems, i have had appts to see dietician but they have either been rearranged by hospital or by me but i have appt for Feb which intend to keep, i missed the last appt because i as ill but she phoned and had a chat to see how things were and mentioned having more blood tests and talked about vit d injections, after speaking to her i contacted my gp and arranged a whole raft of blood tests,i am just awaiting results. As for support groups there isn't one at St Georges, but the team told me they were going to start one this year so i will wait and see, the only support i have had is since i joined this site which wasn't long ago, and i am learning new things everyday thanks to you all

 

[Mixman]

My first check was 4 weeks after then a further 3 months after that on the 13th November. Which is when they told me I should have had the B12 injection and refused to believe that my previous dietician had told me she would organise it for me. My mum was with me at the time and also heard the dietician say she would talk to my GP. But alas, I organised it myself and was fine. Now it's another 6 months for my next check up.

There has been no mention of blood tests, blood pressure etc etc. Now I take this as a sign they are happy, plus I feel very good so hopefully they are all good signs.

What I would like to know is if my blood pressure is getting better, it was higher than normal, but still not 'high blood pressure' stage, if you get what I mean!

I want to know my body is fine, as well as knowing I am feeling better and weighing lots less, how much healthier am i?

Is my lung capacity better?

These are all things I am very surprised that no one has taken the time to tell me it is better or that they want to keep an eye on anything!

 

[tesmaralda]

One word sums up my aftercare CRAP. The hospital well are CRAP, the surgeon himself is excellent but the whole system lets him and the team down.

Hopefully there will be a support group set up be some very special people that may be known to you and when that gets going it will certainly help an awful lot.x x x

 

[candie]

Weirdly enough my Doc rang me yest morn to go in for a weight and bp check with the nurse.I went in the aft and they are pleased with my almost 7 st loss, and normal bp
She also said they will do a full blood screenw hen I go for my B12 jab next month, if I don't get one at my next hosp check in feb
I am their only bypass patient

 

[hopelesscase]

well following on from what i said the other day asbout my provider i have had cause to put them to the test and they have come up trumps.

been having problems for 2 weeks but gp though it was coil related until my fella pointed out after spending the weekend with him that my pain increased after eating.
Phoned the team this morning monday and im seeing the surgeon on thursday as after describing my symptoms the nurse said sounds like youve got a stricture we need to sss you.
How good is that?

 

[Mixman]

Good to see you're getting some great aftercare!

 

[tendersage]

I went private and have excellent aftercare, all my initial appointments and blood tests post op were booked up in advance, and a year post op my dietitian still calls me up to see how i am doing, and i can contact him anytime i wish.

 

[CCPM]

Its good to to hear that some providers have got it all organised and running smoothly. Perhaps over time others will follow

M

 

[Silversurfer]

I think basically the longer out you go the more confident you become in your own ability to lose weight yourself doing it your way and you become comfortable knowing that the tool they have given you is working correctly without problems or causing you issues.
The last time i saw my consultant (Dr David Ashton) he just agreed to my entire approach, saying i was right, now i know he's dedicated his proffesional life to the study of obesity, so there's me telling the expert all about it, but he knows i know what i'm doing and that as we are each individuals we all need to find and follow our own path, and having dropped the lead now he can clearly see my way is obviously working.
I'm fitter today than i've even been in my life, i have my weight under control and i'm eating a healthy diet that i know can sustain me and wont cause weight gain or sabotage my weight lose, i do indulge in the odd treat here and there and eat out whenver i want, but really i have confidence in me that i know i am in control and its all working.