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Leaking like the Titanic..
- Thread starter scooter81
- Start date
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- Tags
- leak sleeve gastrectomy stent
Channel Swimmer
New Member
Like Caren, I really feel for you and wish you a speedy recovery.
scooter81
Walking Disaster Area
Thank you everyone for your kind words.
I was advised by my surgeon and care team that it was not an option to go back in and sew, glue or staple the leak. They said it simply wouldnt withstand being stitched etc.. becauseof how delicate the tissue was.
Having had the surgery, I was given a gastrograff and swallow before I was allowed to leave the hospital. I was asked to drink blue dye for a morning 3 days after being readmitted to see if any dye came out of the drain inserted into my back. Later they used blue dye to flush the NJ tube and see where that came out.
As I went to an appointment at clinic yesterday I just thought Id update you..
At my appointment I was advised that the biodegradable stents that were fitted are not actually biodegradale. This means in the next 3-5 weeks I have to go BACK to theatre to get them removed. A complication of this is that the procedure which will be via endoscopy will more than likely make the leak point larger again.. theres also a chance that tissue has grown and fused round the stents, and theres a risk of perferation, leakage, internal bleeding and/or infection.
If leaks or bleeding occur during the procedure, they will open me up and glue and clamp the site. I cant understand how they can do this now but couldnt before.
They are not sure whether they can take all stents out at the same time of if this will require several procedures as it may be too much for me.
As I have an NJ tube, theres a possibility this will have to be removed for procedure to be done, and then a new tube inserted. Lucky old me..
I was advised they were using the bio degradable stents as they would disolve in 80 days and no further procedures required. I had a seriously long wait for these stents, and find out that they just used a box standard off the shelf stent and didnt get the ones from Holland after all. What angers me most is that nobody even said, "by the way Rebecca, we couldnt use the biodegradable stents so we had to use plastic ones.. we will have to take them out within the next 3 months.." I think Id have been more ok with that because Id have been told the truth and aware of whats going on.
Instead I just get my head round being back home and being back on the mend to have this bombshell dropped on me. Its really knocked me for 6. Im just waiting for a date now.
Brings the question whether they know what the hell they are doing considering all 3 surgeons have each drawn diagrams (which I have) showing the stents being lattice or trellis shape which the tissue grows through, and how its been positioned over the leak hole... This has been explained to my family whilst I was there and during the time I was in ITU. For the past 5 weeks Ive been advised that the tissue will grow through and bridge over the leak sealing it off, but it hasnt.
It turns out theyve used stents that resemble several pieces of plastic pipe which sit by the hole, dont even cover or plug it. Theyve had to put a stent round a stent because it wasnt doing what it was supposed to, it wasnt big enough and the fluid just ran down the side. To say I am angry is an understatement.
All I want is to stop leaking, get better and get on with my life. I understand we are all human and make mistakes, things dont always go according to plan, but this is beyond a joke.
Omg!! This is just plain wrong. Have you give to pals? This is a huge catalogue if errors, my job doesn't deal with people's lives and I'd I make just one mistake it would be a warning or even the sack!! You must complain!!
Bizarrely I went along to an open evening at Little Aston Spire, and Mr Khan was giving a talk. He kept reiterating 'things can and do go wrong ' a little too much and also didn't seem sympathetic to the issues of overweight people, even making a cruel joke to one lady, which made me want to get up and punch him on the nose!
I really hope everything gets a little better for you!
You are in my thoughts and prayers, bless you xxxxxx
Bizarrely I went along to an open evening at Little Aston Spire, and Mr Khan was giving a talk. He kept reiterating 'things can and do go wrong ' a little too much and also didn't seem sympathetic to the issues of overweight people, even making a cruel joke to one lady, which made me want to get up and punch him on the nose!
I really hope everything gets a little better for you!
You are in my thoughts and prayers, bless you xxxxxx
Natstar
New Member
I'm actually at a loss forwards scooter, but I couldnt read and not post something.
I'm sending massive virtual hugs your way and hope they get it sorted soon! Our human bodies are incredible things so I'm sure yours will be sorted fairly soon and you will look back on this time and remember it was awful but that it was a blip and you will soon be able to get on with your life and live it fully,
Be sure to keep us updated on your progress and use us as a place to vent/ moan or get things off your chest. I know right now your not thinking of the weightloss but it will be so worth it soon and your story will no doubt turn into a success one!xx
I'm sending massive virtual hugs your way and hope they get it sorted soon! Our human bodies are incredible things so I'm sure yours will be sorted fairly soon and you will look back on this time and remember it was awful but that it was a blip and you will soon be able to get on with your life and live it fully,
Be sure to keep us updated on your progress and use us as a place to vent/ moan or get things off your chest. I know right now your not thinking of the weightloss but it will be so worth it soon and your story will no doubt turn into a success one!xx
scooter81
Walking Disaster Area
Hi Clar01, Ive spoken to PALS, they have said they will contact me back by Wednesday regarding everything.
With regards to things going wrong, there are 3 other women whom I was in hospital with where things have gone wrong. 2 of them involved leaks, the other a pure screw up from theatre which has resulted in the woman not being able to get out of bed since january, her bowel has been butchered and is now visible through a porthole in her stomach. She has now lost all her hair, also cannot eat or drink.
The other two ladies have leaks. One has allegedly been fixed but still has the same persitant symptoms of leakage, and also has to have her stents removed. Where Im waiting for a date, she has been given hers.
The other lady has been leaking since January and been to hell and back as much as the rest of us. Her Drain fell out a few weeks ago, a few days later her jej feed tube fell out. We have all gone to PALS about everything and just hope they come up with answers.
Ironically the other 2 ladies who are leaking, we were all on the same ward and bay. In fact our beds were next to each other in a row. Daily the doctors would come round and tell us exactly the same thing, but change our names when they remembered what they were. We learnt to see through the shower of mud and have repeatedly asked to be told whats going on.. ie.. whats wrong, what are WE going to do to fix it.. ie. what do they need me to do to fix it? What will they do?
One Jr doctor even suggested that he could look on the internet to see if there were any other ways of fixing leaks. Not funny, when they look to Google for answers!
Out of the 3 surgeons whos charge i am under, Mr Kahn appears to be the straight talking one. If he says he will do something it usually happens and until now had seemed to be honest with me. Now I dont know what to think. If the man is unsympathetic towards overweight people hes in the wrong job. Ironically he is part of the Manor Hospital Trust Directors board as head of infection Control and i forget the other thing. He took over my care after my surgeon/doctor dissapeared for 2 weeks.
A friend of mine was advised on friday that she had been approved for WLS and is now awaitign a date and having seen the psychologist got to see the surgeons again. Friday was like reject clinic... me, the other 3 ladies and other mess ups with bands. Our friend told us she had spoken to the surgeon who would perform the operation, and he spent 15 minutes of the 2o she was there explaining that there could be complications such as leaks. if she gets a leak, this this or this could happen and she could be in hospital for upto 6 months, it could take upto 18 months to heal. I wasnt told this in depth that she was.
I guess if something good has come of this, people are now being told the severity of what can go wrong with leakage etc.. Just a dam shame I and others had to be a statistic to get them to do it.
borogirl
Active Member
Hi
Your posts have made me really scared, hoping to have a sleeve this year. I hope you recover soon. I am pleased your family are being supportive - too many people can be in the "i told you so" camp.
I look forward to hearing how you are doing and I hope you feel well soon.
x
Your posts have made me really scared, hoping to have a sleeve this year. I hope you recover soon. I am pleased your family are being supportive - too many people can be in the "i told you so" camp.
I look forward to hearing how you are doing and I hope you feel well soon.
x
scooter81
Walking Disaster Area
Hiya, Im sorry that my posts have made you really scared as that was not the intention.
The reason for my posts was to show that things arent always plain sailing, to vent and also see if anyone else can offer any support having experienced something like this themselves as its not something you come across everyday.
I feel that you should look into having the sleeve (sure you have already) and take everything into consideration, not just my experience before making your decision. Ive just been very unfortunate, and hopefuly things are on the up, or will be on the up soon..
My family have been amazing with everything and I certainly couldnt have done this without them. With any WLS, its important to have a good support network, and if I can help you in any way, please dont hesitate to shout. Ill keep updating so you can see how things evolve.. once again sorry to have scared you:wave_cry:
honeykiss
Member
Hi Scooter,
Your whole experience sounds like a nightmare, what concerns me the most is the fact there are several of you that have had serious problems all at the same hospital and this should concern PALS as well.
i hope you have a collective voice to make a complaint and voice your concerns.
In all my years of reading stories about WLS bypass, sleeve and band yours is by far one of the worst. Hve ever read regarding the incompetence of the surgeons. Whilst i am well aware these complications can happen and are rare I am glad to see your experiences shared on a site like this so that fellow members are made well aware of the dangers and complications.
make sure you are your own advocate, it sounds as though you are doing a good job but stick with it, you mention one surgeon is more straight talking, i would ask to see him and him alone at any more follow up appointments, it might also be worthwhile researching any other surgeons who do repair work, think the surgeon I had ( Mr Shamsi El Hassani) is also know for doing follow up work on patients like yourself, you need someone who is experienced in dealing with this type of problem, not the surgeons you have who it sounds like and i dont particularly like the term but p#ssing in the wind so to speak.
Please keep us updated, I look forward to hearing some positive news from you soon.
Wendy x
Sent from my iPad using WLSurgery
Your whole experience sounds like a nightmare, what concerns me the most is the fact there are several of you that have had serious problems all at the same hospital and this should concern PALS as well.
i hope you have a collective voice to make a complaint and voice your concerns.
In all my years of reading stories about WLS bypass, sleeve and band yours is by far one of the worst. Hve ever read regarding the incompetence of the surgeons. Whilst i am well aware these complications can happen and are rare I am glad to see your experiences shared on a site like this so that fellow members are made well aware of the dangers and complications.
make sure you are your own advocate, it sounds as though you are doing a good job but stick with it, you mention one surgeon is more straight talking, i would ask to see him and him alone at any more follow up appointments, it might also be worthwhile researching any other surgeons who do repair work, think the surgeon I had ( Mr Shamsi El Hassani) is also know for doing follow up work on patients like yourself, you need someone who is experienced in dealing with this type of problem, not the surgeons you have who it sounds like and i dont particularly like the term but p#ssing in the wind so to speak.
Please keep us updated, I look forward to hearing some positive news from you soon.
Wendy x
Sent from my iPad using WLSurgery
Evenstarr
New Member
Hi Scooter, I'm really shocked by your story, but as you said you wanted to show everyone that it's not always plain sailing. I'm hoping for WLS, not sure which procedure yet, but I've read up on each one both the pro's and con's and the 'when things go wrongs', so hopefully I'm not going into this with my eyes shut.
It's good to hear you have such a great support network as I'm sure this whole thing has left you feeling like you're at rock bottom.
Hope you start to feel better soon and enjoy those missing 64lbs!
((big hugs))
Em xxxxxx
It's good to hear you have such a great support network as I'm sure this whole thing has left you feeling like you're at rock bottom.
Hope you start to feel better soon and enjoy those missing 64lbs!
((big hugs))
Em xxxxxx
Hi, I'm a sleever I'm now 13 weeks post op and feel terrible saying this but my op was plain sailing and I'm fine. I have read ur story and my jaw dropped I can't believe you have been through all this! It must be horrible for you! Please fight for counselling to help you that's the least they can do!! I was not warned once that something as serious as this could happen to me!! I think I must have signed that consent form very naively. I must say if I'd read this pre op I don't know if I could have gone ahead with the op knowing that I may have to face what you are. I take my hat of to you!! And wish you a speedy recovery. Well done for telling your story as I think pre oppers need to hear the bad as well as the good xxx
scooter81
Walking Disaster Area
Hi Em, I wish you luck with your WLS, and am glad that your looking in to everything, the good, bad and ugly.
This whole thing has unearthed that many emotions anddark th oughts that I never thought I would be capable of, it scares me. Ive lay in bed in writhing in pain, doctors words echoing through my head "we cant fix you" just wishing that someone or something would end it all for me, put me out of my misery so my family can get on with things. I know its selfish and I know its wrong, but its the truth. It is the one darkest thought Ive had that I hope I can forgive myself for in time, and never have again.
If it werent for my family, God knows what I may have done. Its the lowest Ive ever been in my life. I have good days (a hell of alot more now) and I have bad days. More importantly Ive learned to accept whats happened and that its not going to be forever though each day seems like an eternity sometimes. I just have to get on with my life, as challenging as it is at the moment and make the most of what I have left and live in hope that this will end soon.
Already I can see and feel the benefits of losing the 64lb, I brought a couple of tops from ASDA in a size 18 instead of a 30. I was shocked! Its just things like the constant sicky feeling, vile undertaste, hunger pains, daily bile and foam vomiting are there to remind me that things arent as they should be.
I go to bed and pray that Ill wake up tomorrow morning and feel better, things will be improved from the day before and I live every day in hope that it will be sooner rather than later.
scooter81
Walking Disaster Area
Hi Hope, theres no need need to feel bad that your surgery went well and mine didnt. It just cant be helped, and Im glad that your not having to go through this as well.
Im still currently fighting for counseling and waiting for PALS to call back re: this because I believe its wrong. You cant scrutanise people pre-op then dump them when it goes wrong.
With regards to leaks I was told that this is a rare complication and easily fixed, it turns out this isnt the case at all. I wish I had asked more, but nope, I signed the form and went off to theatre. Dumbest thing Ive ever done. I just want people to know what theyre getting into because with feedback on here, some people are being told of this complication, others arent and thats something that needs reviewing and ensuring the information is provided.
scooter81
Walking Disaster Area
I had to goto hospital today as the stitches holding my drain had ripped through the tissue and it was hanging out. Before they could stitch it back in, the drain fell out and I now have a stoma bag. I will find out tomorrow at clinic whether I need to have a new drain fitted.
angiemason
New Member
you poor thing , i have just read all this and feel terrible for you, i truly hope you manage to get sorted out and very soon xx take care and thank god you have a wonderful family
Caren
Love my sleeve!!
oh bless your heart, i cant believe you keep having all this trouble, i really hope you get sorted honey xxx
scooter81
Walking Disaster Area
Returned to hospital today to see consultant at 11am apt, clinic is running over 50 minutes late. at 12:10 the consultant im due to see leaves the surgery and says hi before he goes. He tells me that I will have to see another of the consultants there as he has finished and walks off eating an apple. I could have easily taken the apple off him and scoffed it. I could feel myself drooling.. im going crazy without food..
Get to see other consultant who advises me not going to put a new drain in just yet. will see how i go in next 7 days with no drain just the stoma bag collecting the puss and stuff coming out. Also advises theyve not been able to speak to endoscopy about getting my stents removed yet so cant give me a date. Im advised to return back to clinic next friday, they will speak to endoscopy on wednesday and let me know when they will take stents out if they go ahead. I asked about gluing the leak with tisseell glue, over sewing the leak, restapling it and am told need to speak to endoscopy will come back to me.
When subject of nutricia protein plus food making me vomit daily once feed starts, im advised this is normal.. now Im worried! It cant be right if a feed going into your bowel makes you violently sick within 10 mins of starting? I spent 3 hours collectively yesterday during feed being sick. stopping to be sick, letting things settle, and almost as soon as settled, the sick starts again. Told to basically suck it up ad get on with it. The other alternative is to be readmitted to hospital and put back on TPN... Will hold in there till next friday, 18/5/12 though it cant be good with all the gut wretching to chuck up what?? Foam.. and bile...
Feeling deflated and fed up.. maybe l just want and expect too much??? is it wrong to expect an answer to a question they said would be given today.. IE when will i be back in theatre??? how / what are you going to do to stop me leaking?!?
Get to see other consultant who advises me not going to put a new drain in just yet. will see how i go in next 7 days with no drain just the stoma bag collecting the puss and stuff coming out. Also advises theyve not been able to speak to endoscopy about getting my stents removed yet so cant give me a date. Im advised to return back to clinic next friday, they will speak to endoscopy on wednesday and let me know when they will take stents out if they go ahead. I asked about gluing the leak with tisseell glue, over sewing the leak, restapling it and am told need to speak to endoscopy will come back to me.
When subject of nutricia protein plus food making me vomit daily once feed starts, im advised this is normal.. now Im worried! It cant be right if a feed going into your bowel makes you violently sick within 10 mins of starting? I spent 3 hours collectively yesterday during feed being sick. stopping to be sick, letting things settle, and almost as soon as settled, the sick starts again. Told to basically suck it up ad get on with it. The other alternative is to be readmitted to hospital and put back on TPN... Will hold in there till next friday, 18/5/12 though it cant be good with all the gut wretching to chuck up what?? Foam.. and bile...
Feeling deflated and fed up.. maybe l just want and expect too much??? is it wrong to expect an answer to a question they said would be given today.. IE when will i be back in theatre??? how / what are you going to do to stop me leaking?!?
