Anyone else had a negative experience?

[AMJ2598 21]

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

[FifiLux 464]

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.

Edited April 26 by FifiLux

[summerseeker 2,169]

4 hours ago, AMJ2598 said:

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 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

[AMJ2598 21]

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.

[AMJ2598 21]

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

[FifiLux 464]

16 hours ago, AMJ2598 said:

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.

I am a stubborn b**ch so I used that strength to get me through on the days I knew what was going on but a lot of the time I had no idea how sick I was. It was only afterwards I found out how bad I was and how worried all my family and friends were. I didn't mention it above but I also had a blood infection and then an allergic reaction to one of the medications - basically anything that could go wrong/happen did.

They couldn't do the feeding tube via my arms as my arms got infected and the veins collapsed, I think I had 8 different IVs in my ams over the months, they just kept switching from left to right until all veins had collapsed. I ended up having to have blood draws from my foot at one point and had my IV in my neck. I actually thought I was going to be physically ill when the first told me they had to put the IV in my neck and had to be given a xanex to calm down and go to the the procedure room but it was actually ok then afterwards and so much easier than my arms.

I know what you mean about the health anxiety side of things, I was worried about everything when I came home finally, it was a shock to my system to suddenly be without the constant checks from nurses and doctors and not know if a little twinge or cough etc was a bad sign or just normal. I had to take my blood pressure during the day and do temperature checks to make sure I was at a normal range.

I was also afraid to go for a walk of a few minutes in case I then didn't have the strength to get back home so I just walked the bus route on my road as figured if I could walk to the end of the road and get stuck I would just get the bus back. Now I can do 1.5km or so around the block at a steady pace. I am not sure where you are in the food reintroduction phase but once you are able to eat more Protein it should also help with the energy levels but I do think rest is key. Once I got into a decent sleeping pattern again, took a few months at home after the nurses rounds at 11pm 4am 7am etc., I really saw the improvements in my energy.

That is great that you got the appointment for next week. Just keep asking them to check everything and be honest with them about your fears so they can discuss with you.

Just give it time and let your body recover, it has been through a shock to the system with the weight loss and then the infection on top. I figure my horror show can only help others to not feel as bad if they are struggling a bit. It has taken me a long time to start to feel better and more positive but I think I have turned a corner in the last couple of weeks.