AMJ2598

4 hours ago, summerseeker said:

I am so sorry that this has happened, it must be so traumatic. Lots of us get the ' was it worth it feeling' with out the issues you have had to get through. When you feel more in charge of your pain and more sure of the process, you may feel it really was worth it. I did.

The rapid weight loss and anaesthetic also makes you feel weak and tired. As you eat a little more you will regain your strength and start surging ahead hopefully. Good luck and good healing

Thank you for your kind words - I hope I do regain it, as I feel totally wiped out! x

5 hours ago, FifiLux said:

Sorry to hear what you have gone through and are still going through.

I know exactly how you feel about wondering if the surgery has been worth it, I wondered the same for many months after mine but I can now say 10 months later that I see the light and know I could not have lost the weight I have done so far without the surgery and I can now finally feel the benefits.

I have posted about it before on the forum but a recap to show you how s**t things can go..... I had my surgery 4th July 2023 and suffered severe pancreatitis brought on by the surgery (iatrogenic according to the medical reports) which resulted in me having a drainage tube fitted to my belly area and being hospitalised for one month.

Three days after being released I collapsed at home and had to return to hospital via ambulance. There it was discovered that I had a leak in the stomach where the sutures hadn't sealed. I spent a further two weeks in hospital where I had to get clips put in to close the hole/leak.

I then lasted 13 days at home before becoming ill again. I went in for a gastroscopy to check on the clips and turned out the clips did not do their job and I had leak back plus two abscesses (1 on stomach, 1 on pancreas). Spent a further three weeks in hospital on a feeding tube before getting all clear to go home after another round of clips were put in and passed their tests.

Next time I lasted 15 days at home before having to be readmitted for another month! I never felt fully better but wasn't sure if that was just me recovering from all the trauma or still symptoms. I had a blood test one morning and that afternoon got a call to say I was to come back to the hospital immediately as my CRP was 180. Turned out the hole had opened again and I had an infection. Was put on a feeding tube again for the month and had a drainage tube fitted to my back, had so many different medications, a transfusion, tests etc it was exhausting. I was then sent to a hospital in Belgium to have a tube/coil like thing inserted in my stomach help the hole heal. I was finally released from hospital November 1st 2023.

Like you I couldn't do things, I couldn't even stand at the kitchen counter to chop veg without feeling like I was going to collapse. The effort of having a shower and getting dressed some days was too much for me and it took me many months to get to my energy up to more than being able to something small each day. It is really only since mid-February that I can say my energy improved. My weight loss was also slow when in hospital as they were pumping me full of nutrition (via the feeding tubes) but it sped up once I was at home.

I had the tube in my stomach removed three weeks ago and had another round of tests to make sure that the hole had healed and I have passed with flying colours. So far so good, no pain or discomfort which is such an improvement. The only thing I suffer with now is a bit of reflux and occasional terrible exhaustion. I was out for dinner on Sunday night and almost collapsed at the table the exhaustion came on so suddenly but I was ok a while later. I don't let it stop me, I have so much more energy than pre-op but I just know I have to pace myself and rest when I can.

Basically, I just want to let you know that after all of the above that I have been through I now feel the relief of the surgery and the weight loss. I am now at the weight target the surgeon set for me, 75kg, though I will aim for a bit more and I no longer cry myself to sleep with pain or stress or the fear to make plans for the future. It has taken 10 months for me to get here, I am at the stage now that probably those who have a successful surgery would have been at months ago with their recovery from the op and getting back to a 'normal' life. I am going to see a psychologist through my hospital service for the medical trauma which has helped me as well.

Do make sure that you go to the hospital if your symptoms worsen, or don't improve, and ask the doctors to check your levels just to be sure that there is no infection still there etc. Rest when you can, I don't know your situation but if you don't have to get up and go out during the day for work/kids/shopping etc. then don't, just take the time to heal and recover. Also ask for help if and when you need it and also say no to things that you may not want to do if you don't feel up for it - being a control freak these are things I am trying to learn to do.

wow, I'm so sorry all of this happened! That must've been awful to deal with so props to you. I felt like I was going insane with just a month stay in hospital.

I have a doctors appointment on Monday, luckily they got back to me quickly today and triaged my referral. They did ask me to go back to my surgical team first, but I had my surgery about an hour away and it's just awkward getting there when I cant drive or use public transport at the moment, which they understood.

I also had a feeding tube - not via nose but via a line in my arm - and the nutrition in that daily... the side effects are not pleasant! So I can totally sympathise with you there.

They did mention pre-surgery I could potentially wake up with a drain from one of my incisions, which I didn't in the end, but part of me feels like perhaps it would've helped identify the blood build-up, or something else. Another thing similar to your story was they also thought it could've been a leak as something showed up on the CT scan along the staple line. They eventually ruled that out but my health anxiety is just crazy now.

Hi all.

I had my gastric sleeve on 28th March, and very quickly realised something was wrong.

I couldn't tolerate Water at all, and a few days after I developed tonsillitis. It was severe and believed to be Quincy's, which thankfully after a transfer to another hospital to check for this, it wasn't. However I became really really ill - my temperature was at sepsis level, I was completely dehydrated and on an IV for everything. Tried antibiotics but that didn't really work, which then led the doctors and surgeons to believe it would either be a very nasty viral infection, or I'm being followed up to check for an auto-immune disease.

I spent 4 weeks in hospital, and now that I'm home, my symptoms are (whilst better from the pain I had a couple of weeks ago) still very uncomfortable. I have a very angry and inflamed liver which is causing me pain, as well as the incisions of the port site resulting in a very large haematoma, again causing discomfort and pain. The most frustrating thing for me is, whatever caused this, has completely wiped my energy and strength. I can't open a bottle, and I struggle to walk for more than 10-15 minutes without feeling tired and fatigued.

I have lost 19lbs since surgery (5 during the month in hospital, and another 14 this week), but a part of me is wondering whether it was even worth it given the ordeal it caused.

I just feel very alone in terms of my procedure not being straight forward, and it would be good to hear other stories too. x

On 4/2/2024 at 12:19 AM, NovelTee said:

Fingers crossed!!

I actually didn't get out until this Monday lmao. I ended up getting really bad, but doctors and the surgeons are unsure as to why. Either a really nasty viral infection or, currently being tested for an auto-immune disease.

Very uncomfortable even a month on. A lot of pain from an inflamed liver, as well as the incisions still. Absolutely zero energy and fatigue all the time.

Had my sleeve on the 28th of March. Had a few problems with pain around the port used to pull the stomach out, so stayed in hospital a little longer than usual. Hopefully out tomorrow!

19 minutes ago, Tymilynn said:

Scheduled for the gastric sleeve March 28th and extremely nervous. 6 days into the pre-op diet, so far so good.

Likewise! Sleeve on the 28th, started my pre-op diet last Thursday. Opted to go fully liquid to help prep for post-surgery, and because I was already on quite a low-cal diet anyway. Good luck!!

I'm 3 days into my 2 week LRD, and to be honest I didn't do anything similar to this, as much as I wish I did! But I was so worried about putting weight back on and not getting to the number I needed to be at, as I have my surgery through the NHS, so I started my liquid diet about 3 days early, and before that for the 2 weeks I knew of my surgery, I was super strict with what I ate.

There are definitely a couple of things I really really crave, but I've waited way too long for this to be ruined by myself. I really love Halo Top ice cream as it's lower in calorie than the usual pint of Ben & Jerrys, so I'll be excited to eat this when I finally can.

Also, just a very nice sunday roast. Yorkshire puddings. Can't wait.

14 hours ago, Spinoza said:

OK. I would email the person saying you need to lose this set amount well in advance. Set out your loss to date. Explain what the surgeon told you and how you formed a reasonable expectation that anything under 130kg and you would be good to go. Explain that you have been restricting your diet in the expectation of a surgery date and that your loss since referral is actually 11kg, far in excess of the required 3.5kg.

I hope that you CAN lose something ahead of your date but I think stacking up the evidence about the conflicting advice you've been given might give you grounds to complain if you're turned down. Don't wait till the day of surgery to say all of this. Call them out right now on what they're asking.

Thank you! So far I have lost around 3lbs in 4/5 days so I'm feeling okay about it, but not without struggling for sure.

I did email my nutritionist (who is the one who told me this information) to be told she just put it down to 'what she thought my surgeon would want'... very vague.

12 hours ago, Arabesque said:

16 hours ago, NickelChip said:

How frustrating when you're already doing so much! All I can offer is my experience with my pre-op liquid diet. For the weeks, I had 3 Protein Shakes per day, sugar-free Jello, broth, and the occasional sugar-free popsicle. Averaged around 600 calories per day and around 20 carbs or less per day. It was effective, if not pleasant. I lost about 6.8 kg in 2 weeks.

It’s almost like they’ve conveniently forgotten you’ve lost your pre surgical weight & are just telling you to lose more as per their set playbook. I also love how they’re telling you to lose weight but aren’t supporting & guiding you in how to do it. Where’s their pre surgical diet? Where’s the referral to a dietician??

Like @NickelChip, I would suggest the three shake a day pre surgical diet many are given. Or do two shakes & one meal of 3 or 4 ozs Protein & 1/2 cup steamed vegetables or undressed salad.

All the best.

So I begin my pre-op diet in just over a weeks time, but to be honest I'm just really worried it won't get rid of the weight I need. My calorie count and nutrition is already so similar to what they want me to do, and I'm still struggling. I have an appointment next week to get some pre-op tests done, presumably weight and bloods etc, and even then I'm petrified if the number is even slightly above what they need, that'll be it.

Other than a straight up Water and broth fast, I really am stuck on what to do! I will be on all-liquids for the pre-op diet which is fine, but it's difficult to not get hung up on the fact they've drilled into my head that I MUST hit a certain number, regardless of my loss already.

March 28th for me UK based, having a gastric sleeve. 5 years of waiting, therapy, consultations, a global pandemic & a few other issues in the middle, I can't wait for my new life.

Hi all,

After my prior post regarding the complaint I had - I finally have my surgery date for the 28th of this month, after almost 5 years since my first GP consultation about the sleeve (yippee!).

With that being said however, they gave me 4 weeks notice because they now want me to lose another 3.5kg pre-surgery. For context, I was 135kg at my highest, they wanted me to stay below 130kg, and I'm now 124kg. They didn't give me a reason why, I have always had ok blood test results, I'm not pre-diabetic or anything either. The last consultation I had in-person with my surgeon also said 130kg would be fine, so again, don't really understand the change.

Believe me when I say, my diet is STRICT. I'm on 1000 calories a day, high Protein, super low carb (less than 40g per day easily), lots of Water (at least 2 litres minimum), and an average of 10-15k steps per day, with at least one hike per week. I've been doing this for the last couple of weeks, but I am really really struggling to get this last few kg's off beforehand. No sugar - no fruit, nothing.

I really think my PCOS is not helping the situation, but I'm really worried in the event I'm not at the 121kg they want. I have been that weight recently, I was down to 119kg this time last year with the help of Saxenda, which I then had to stop taking in June because every pharmacy I could order from were sold out. I haven't been on it since, so the fact I have maintained this weight loss honestly I'm just pleased with at this point.

If anyone has any ideas as to how I could lose this last 6lbs or so, I would be greatly appreciative. I've lost 0.5kg so far over the past 4-5 days, but I'm so stressed I'll get to the hospital and they'll turn me away.

Thank you! x

7 hours ago, NickelChip said:

Given that the NHS is government run, maybe you should send a letter to your MP as well. It couldn't hurt to make your complaints known to an elected official, even if, like here in the US, they don't do much. Sometimes they can surprise you by being effective.

Totally agree with the lack of work by MP's similar to yourselves over the pond! I did reach out to PALS, who are the official complaints people for the NHS, and the admissions team at the hospital did come back to me this morning. Felt a lot like many excuses, some not-so-reassuring promises about a provisional date in March (not holding my breath really), and generally just not much else.. alas, we will get there

7 hours ago, Bypass2Freedom said:

This is so awful, I am beyond sorry that you have had to go through this.

I know most of us can completely empathise with how hard the waiting game is at the best of times, let alone with the added stress of the NHS and how badly run it seems to be with WLS!

I had initially considered just staying on the NHS waiting list (I am currently on the Tier 3 Weight Management programme), but after hearing awful experiences like yours, and from reading about waiting times, I decided to look into going private with Spire. I think it may be worth just getting a second opinion in regards to what you were told before by a private surgeon!

My surgeon, Simon Monkhouse, was amazing in the initial consultation. I have PCOS too, and an underactive thyroid, and he recommended a bypass and was transparent about it all. You can get a free consultation with him quite quickly, maybe this would be an option for you! simonmonkhouse.com

I have everything crossed for you that you will get the surgery soon, and everything will work out. I'd definitely pursue putting in a complaint, too.

Sending love and hugs x

Ahhh, the lovely tier 3 programme! It took an absolute age just to even be considered for that to begin with, I really feel for you. Then the added issue of thinking you would be aiming for a certain month or period of the year, to then be told last minute it's being pushed back, again and again, is genuinely the worst of it.

Being completely honest too, as someone who is self-employed, I just don't earn enough regularly to commit to paying it per month. I was working 6/7 days a week between two jobs and I was barely earning more than 22-ish thousand a year salary until the end of last year. I do have the comfort of earning a little bit more now, but only in the right seasons unfortunately.

I did put in a complaint yesterday to PALS, and they very quickly responded which was good of them, but it was conveniently not the woman who caused the stress to begin with. They've 'provisionally' (and I use that loosely!) let me know the 28th of March could work depending on how many others they have to schedule.

Just a waiting game I suppose. Thank you for your kind words, I really appreciate it x

5 minutes ago, BigSue said:

Wow… I’m not in the UK, so I have no idea what is considered common practice, but this is not only terribly unfair, but also illogical. It’s not like a transplant where they may only have a few hours to get the organ into a recipient; they should be able to give you at least a few hours to respond (and also a way to reach them). They can’t possibly expect you to be ready to answer the phone at a moment’s notice any time, anywhere.

If I had to guess, I would say this is probably not really their policy, but the person who called didn’t want to take the time to call you back or wait for your call and just moved on to the next person because it was easier. That would be a really callous way to handle something so important. I hope you can find someone to correct this so you can get your surgery!

Thank you, I completely agree. Common practice usually would be to call the patient on the waitlist at the top (I have been told you are able to refuse a date to be offered another just one time, in the event you have a situation you can't miss in your personal life, for example), and offer the date with 2-4 weeks notice of surgery to begin the liver reduction diet.

I agree though, it doesn't take a genius to work out that this way of contacting people is simply ridiculous. What if one is driving again, or it's an inappropriate time to answer a call?

I have since found the complaints email for the health service trust, and have sent one off to explain the situation. I would be shocked if this was their policy, honestly, but I'll wait and see I suppose.

14 minutes ago, summerseeker said:

I am so sorry. You really have been treated badly. How can they plan surgeries this way ? I have never come across this before. I don't know who you can complain too, but I would be doing it.

I went to a private hospital, Spire, worth every penny.

Thank you. I honestly have no idea how they would think it’s a sensible way to schedule anything, honestly, I was so shocked I couldn’t say anything to her on the phone. I think I may call tomorrow to ask for a complaints number to be honest. I just can’t understand how that is even justifiable.

I’d love to go private and I did look into it, but I had a few complex needs that they advised I go back to the tiered weight management service the NHS offer for help and therapy first. At this point I wish I’d have ignored their advice and booked anyway!

Hi everyone.

I thought I would pop this on here, and someone who is feeling incredibly frustrated and let down by the whole waiting process.

For context; I am waiting for a gastric sleeve date, after almost 5 years on the waitlist with the NHS based in England. Ironically, I could've paid for private surgery almost twice over with the amount of tax I've paid since waiting!

I have been 'at the top of the list' since October last year, and have done everything they have asked of me - kept my weight below my initial weight at the beginning of my consultations; diet change; lifestyle change; everything to try and help eleviate some of my PCOS symptoms whilst I wait. I'm just feeling so ticked off today.

I missed a call by a couple of seconds whilst I was driving to work, and had a gut feeling it would be from the hospital I'm having the surgery in. I tried to call back, but typical, it was a number that didn't receive incoming calls. I tried for 20 minutes to get through to the right department (had the phone put down on me when I was put through to the wrong team, and asked to be put back to the switchboard?). When I finally managed to call through to surgery admissions, I was advised that because I didn't answer the phone (despite LITERALLY not having a number directly to call back on), they had already called someone else and given my slot away.

Livid and heartbroken do not come close to how I felt today. I am so exhausted of the waiting game, even moreso when there's been several times I've had appointments in person cancelled at the last minute, after travelling 2 hours there and back; cancelled phone calls at the last minute; zero in-person physiotherapy despite being told for over 2 years I would receive them.

I now have to wait - god knows how long - for the next phone call, that heaven forbid it's unsafe for me to answer my phone at that point in time.

Has anyone else in the UK had anything like this before? I just can't believe they wouldn't give me a chance to call back as I did, or call me again within a couple of minutes.

I'm self-employed, and as the spring/summer months approach, I may lose out on a lot of work and earnings with surgery recovery, which is why next month would have been perfect.

Any support right now would be great. I'm feeling so deflated and worn out by this.