LONG TERMERS ALL SURGERY TYPES come on in say what you want or need

[CCPM]

At present I'm posting away under Gastric Bypass over 6 months but the opinion was in our chat we need to be long termers across all surgeries. Yes we will have surgery specific problems but I think I'm right in saying we all agree that long term whatever surgery brings similar needs.

So come on in post your views male, female, any age, any type of surgery. What do you need? what would you ideally want available?

TALK you know you want to

 

[tranquil_butterfly]

Hello CCPM - hello all. I know there is a section on revision surgery but I would like to say a few words and get some help. For those who do not know my looooong story I battled long and hard for my original surgery which eventually happened over 4 years ago. Howevr it all went horribly wrong - I went in for a bypass and came out with a band. This is not a piece knocking bands - I tried really hard with it as a tool and had some success but with my starting weight and BMI it was never a realistic long term solution for me. I would have persevered - my first surgery was on the NHS and thought my chances of getting surgery again on the NHS was nil - but I developed some serious issues health wise and in the end had to have a complete defill and slowly put back on everything I lost.

Then came round two in the battle with the system and at the point where I was about to take my case to the health ombudsman the chief exec of my provider thought he could do without the heat and I was put on the list for revision surgery. This eventually happened on 26 November 2014 and I went from a band to a sleeve.

I admit it has been a struggle hence my plea for help. There is little out there in term of information on revision surgery. My consultant was as vague as he could be when I asked to see him some weeks before the surgery to ask some questions. I suspect there are two reasons for this - they have still not been able to explain fully what went wrong in the first surgery and secondly he just did not know.

I suppose my concern is I am not clear why things are progressing the way they are. I am losing weight - but it is at a rate I was led to believe would not happen. It is not huge amounts and I have had one stall but I was told to expect slow weight loss because of my previous surgery and expect not to lose as much of my excess weight than someone who has a sleeve as their first surgery. I was happy with that - but now I am wondering if something is wrong. The weight is coming off quicker than I expected. I have had bloods done post surgery and my count came back abnormal so that is being looked at. I am not unduly worried as I have posted elsewhere.

The restriction I have is my biggest concern. I knew it would 'feel' different to that I had with the band but I just cannot get over how very different it is. I know it is early days but I cannot imagine ever eating normally again. I cannot tolerate anything other that very soft food. Anything else and after a tiny amount I am being sick. I am running out of ideas in terms of what to eat and often end up forcing myself to eat something because I know I should. My fluid intake is poor and I have to make a real effort to drink but barely manage 3/4 litre a day.

I do not have another appointment to see my consultant for a couple of months having had my first post op appointment - which lasted about 5 minutes. I don't know whether I am worrying unnecessarily or whether there potentially is a problem

Just throwing this out there for any views and/or advice.

TBx

 

[CCPM]

Not by any means an expert Tranquil but its is still very early days for your revision surgery. I think you are around 10-12 weeks out and 'soft' food seems normal at that stage even on 'solids'. It certainly was for me with Gastric bypass. Your restriction would hopefully be very tight at this early stage. My understanding is that, like a bypass, sleeves slacken as time goes by. First allowing you to eat more solid foods then over longer time periods to eat more.

Keep an eye on it both in terms of weight lost and ability to get solid food down. I didn't really get settled down until 6 months out. If you feel ill or your lab tests persistently show abnormal ranges that are way outside the normal then get back to an expert - your GP will not be that person!! If however abnormal is say within 10-20% ask you GP or team it may just be that you need to alter your supplements or adjust types of food. Above that you may have a problem of another kind.

BUT if anything at all makes you worry or feel unsure or uncomfortable forget everything and get a consultant's opinion.

Hope you get some answers

 

[tranquil_butterfly]

Thanks for the response. I am going to keep a very close watch on everything.

Best wishes

TBx

 

[CCPM]

Here I am again Tranquil. I hope you do get some answers as those of us that just have a trouble free time at any stage can seem complacent, not really understand. I do try so hard not to be that person. My life is built around research and working in the NHS and yes its not overstating it that I try to ensure I don't ignore others and their very real experiences/ struggles.

I wish I had the answer for anything everything but like most I don't. As each year ticks by I feel more and more isolated, no-ones fault, others are able to move on, reasons not given or required. Well maybe. today i had a PM from a gastric bypasser who had their op 18 months before me who I was close to for about 2 years in terms of posting on threads etc. I originally joined the forum as my friend had had a gastric sleeve overseas in total secrecy and when she finally told me I tried to get information as to how I could support her, then 9 months later totally my own decision I had the bypass.

The contact from a bypass colleague was to say she had done so well (I know that she posted every day on here) then less often and finally she disappeared. Today I find she married had a baby and was so happy (who wouldn't be) then she started to struggle and gain weight. Over 11 stone back on in a year and that brought mental challenges and her marriage broke down. She then felt an even worse failure and gave in and 5 more stone went back on. She is now 24 stone and only 3 stone less than her start weight.

Has she failed? Depends who says and what criteria they use. I hear her pain, do I understand it/ Of course I do regain has whacked me round the ear so many times. How much do I wish she had felt there was somewhere she could go to discuss this and get real advice and support to help her.

i sent her a very long email and she replied and then rang me. Can I sort her out? Of course not I am not equipped at all. BUT if this and other fora had a well developed long term section maybe, just maybe, she could have had somewhere to go to talk to others that were experiencing long term issues.

We have different surgeries, we have different experiences but we all are long term. Bring it on, get it out and chat it is such a valuable thing to do

 

[Yvessa]

Oh my gosh That story terrifies me If someone doing so well can regain so much in a year what hope do we have??

 

[emma-louise]

Here I am again Tranquil. I hope you do get some answers as those of us that just have a trouble free time at any stage can seem complacent, not really understand. I do try so hard not to be that person. My life is built around research and working in the NHS and yes its not overstating it that I try to ensure I don't ignore others and their very real experiences/ struggles. I wish I had the answer for anything everything but like most I don't. As each year ticks by I feel more and more isolated, no-ones fault, others are able to move on, reasons not given or required. Well maybe. today i had a PM from a gastric bypasser who had their op 18 months before me who I was close to for about 2 years in terms of posting on threads etc. I originally joined the forum as my friend had had a gastric sleeve overseas in total secrecy and when she finally told me I tried to get information as to how I could support her, then 9 months later totally my own decision I had the bypass. The contact from a bypass colleague was to say she had done so well (I know that she posted every day on here) then less often and finally she disappeared. Today I find she married had a baby and was so happy (who wouldn't be) then she started to struggle and gain weight. Over 11 stone back on in a year and that brought mental challenges and her marriage broke down. She then felt an even worse failure and gave in and 5 more stone went back on. She is now 24 stone and only 3 stone less than her start weight. Has she failed? Depends who says and what criteria they use. I hear her pain, do I understand it/ Of course I do regain has whacked me round the ear so many times. How much do I wish she had felt there was somewhere she could go to discuss this and get real advice and support to help her. i sent her a very long email and she replied and then rang me. Can I sort her out? Of course not I am not equipped at all. BUT if this and other fora had a well developed long term section maybe, just maybe, she could have had somewhere to go to talk to others that were experiencing long term issues. We have different surgeries, we have different experiences but we all are long term. Bring it on, get it out and chat it is such a valuable thing to do[/

Some of what you mention here CCPM is why I posted about having nobody to relate to anymore..
It's not anyone's fault,but my post seemed to cause offence to a few people,and still has by some of snide comments I have read recently.
Because after the honeymoon period ends...you may see things differently.
I don't regret my surgery...well..sometimes I do....it's hard.
I love my surgery for giving me my life back to enjoy with my children while they are young.
But I feel bad for the upset and concern my pain issues have caused my family.
And at times I don't feel I want to post on this site due to it sounding negative all the time...
And yes..I've had another crappy day with a bloated stomach that looks like I'm 9 months pregnant,pains again...so forgive me for not seeing rainbows.
That's my moan over... Cheers

 

[Yvessa]

Sorry to hear this Emma I'm going to assume that this far out you've checked on constipation issues?

 

[brooke_marie]

Hey, haven't been on here in a really long time. I'm a year and 2 days post sleeve and starting to feel really down about majorly slowing weight loss. I started off at 156kg, had surgery at 144 and am now 95.1kg (14st 13). Feel like everyone I know who had surgery around a similar time has lost a lot more than me. Just need some support I guess.

 

[emma-louise]

Sorry to hear this Emma I'm going to assume that this far out you've checked on constipation issues?

I'm fine in that area yvessa..toilet issues no problems...thank god
It's just really getting me down now...and ended up have a good cry to my hubby last night.
I feel like I've "made my bed" if you know what I mean

 

[Yvessa]

I do indeed. I live in a state of jealousy at the moment as I feel I will never be 'slim'. Feel like noone really gets it.

 

[emma-louise]

Hey, haven't been on here in a really long time. I'm a year and 2 days post sleeve and starting to feel really down about majorly slowing weight loss. I started off at 156kg, had surgery at 144 and am now 95.1kg (14st 13). Feel like everyone I know who had surgery around a similar time has lost a lot more than me. Just need some support I guess.

Post away on here Brooke..you'll get support here x

 

[emma-louise]

I do indeed. I live in a state of jealousy at the moment as I feel I will never be 'slim'. Feel like noone really gets it.

I don't know how to deal with this anymore...I've got rid of my old problems and replaced with a whole new set.

 

[tranquil_butterfly]

Gosh, that post CCPM is really sobering. It has made me think...long and hard. I feel for the person concerned. Regain is something none of us whatever surgery type can afford to ignore. I have been through it once with the band and countless attempts with diets before. The thought of it happening with the sleeve, with the difficulties I am experiencing now has left me feeling - well I don't know - scared.

Yvessa there is hope. People need to stay in touch with the forum through good times and bad and continue to share experiences because that is the only way to increase the knowledge base.

emma- louise I am glad you posted when you did because it started a debate and hopefully threads like this will bring people back. It is not moaning - you are going through something that is causing you pain and without any answers at this stage and it is right you should feel free to express what you have. Last time I looked we live in a country where we can do that without fear of reprisal. The forum is about celebrating successes and the flip side of that - giving an avenue for those struggling for whatever reason to express what they are feeling and get some help and support.

TBx

 

[tranquil_butterfly]

brooke - you have done really well to date. What is your intake like? Have any bad eating choices crept up on you?

TBx

 

[Yvessa]

In all honesty Emma, I completely do get what you mean. Once we're out of easy solutions there aren't many others left. I get annoyed that the hospital don't really give me answers, but then realise that they just don't have any.

If you give us a list of things you've tried, maybe we can put our heads together and come up with some ideas your could try?

 

[emma-louise]

Gosh, that post CCPM is really sobering. It has made me think...long and hard. I feel for the person concerned. Regain is something none of us whatever surgery type can afford to ignore. I have been through it once with the band and countless attempts with diets before. The thought of it happening with the sleeve, with the difficulties I am experiencing now has left me feeling - well I don't know - scared. Yvessa there is hope. People need to stay in touch with the forum through good times and bad and continue to share experiences because that is the only way to increase the knowledge base. emma- louise I am glad you posted when you did because it started a debate and hopefully threads like this will bring people back. It is not moaning - you are going through something that is causing you pain and without any answers at this stage and it is right you should feel free to express what you have. Last time I looked we live in a country where we can do that without fear of reprisal. The forum is about celebrating successes and the flip side of that - giving an avenue for those struggling for whatever reason to express what they are feeling and get some help and support. TBx

Thanks tranquil x
Got a bit of a lump in my throat after reading this,just not having a good day today.
Just got a few others things going on too,and it makes everything harder to deal with when your in pain.

 

[tranquil_butterfly]

Thanks tranquil x
Got a bit of a lump in my throat after reading this,just not having a good day today.
Just got a few others things going on too,and it makes everything harder to deal with when your in pain.

I hear you. Hang in there.

TBx

 

[emma-louise]

In all honesty Emma, I completely do get what you mean. Once we're out of easy solutions there aren't many others left. I get annoyed that the hospital don't really give me answers, but then realise that they just don't have any. If you give us a list of things you've tried, maybe we can put our heads together and come up with some ideas your could try?

Well so far these are the tests I've had done..
Firstly to check for possible twisted bowel
1 CT scan
1 CT scan with dye
1 endoscopy
Medications to help with pain..
Randitine,and lanzaropsole still take these but I still get discomfort and bloating.
The consultant told me to ease of lanzaropsole and just take randitine to see if bloating decreases.
It still happened,so still taking both,and was under the impression these types of meds are for ulcers.
I asked if an ulcer would have been picked up on a endoscopy,they said yes and found nothing.
I don't eat bread,hardly any carbs,not much milk or even meats...but..the biscuit tin calls me
I don't think food is causing this.
My pain is a twisted/trapped pain that is intermittent,high up,can suddenly come and go.
Really don't know how it's going to be found until I'm in the episode.
Hospital might suggest a camera through stomach,to check for hernia.
Can't bend,sit,do anything strenuous..
That's where I'm up to yvessa,,

 

[tranquil_butterfly]

Well so far these are the tests I've had done..
Firstly to check for possible twisted bowel
1 CT scan
1 CT scan with dye
1 endoscopy
Medications to help with pain..
Randitine,and lanzaropsole still take these but I still get discomfort and bloating.
The consultant told me to ease of lanzaropsole and just take randitine to see if bloating decreases.
It still happened,so still taking both,and was under the impression these types of meds are for ulcers.
I asked if an ulcer would have been picked up on a endoscopy,they said yes and found nothing.
I don't eat bread,hardly any carbs,not much milk or even meats...but..the biscuit tin calls me
I don't think food is causing this.
My pain is a twisted/trapped pain that is intermittent,high up,can suddenly come and go.
Really don't know how it's going to be found until I'm in the episode.
Hospital might suggest a camera through stomach,to check for hernia.
Can't bend,sit,do anything strenuous..
That's where I'm up to yvessa,,

Have they tried having you in hospital for a few days so they can actually see what happens when you are having the symptoms? How often do they occur?

TBx