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Leaking like the Titanic..

scooter81

Walking Disaster Area
Hi, has anyone had any experience of stomach leaks??

I had a sleeve gastrectomy on 25th February 2012 and all appeareed to go well and I was promptly discharged. A week later, I was readmitted into hospital via A&E as I was vomiting blood and fleshy bits. I was given blood transfusions and admitted nil by mouth.

After 4 days of being in hospital, I was advised I had a leak and would need a stent fitted to control and eventually stop the leak. However, the dissolveable stent required could only be obtained from Holland and were made to order.

14 days later, still waiting for the stent to arrive, and having GAINED 31lbs, I was advised by my surgical team that I was seriously ill and had to goto theatre within the next hour or I may not make it through the day. I needed a stent fitted to stop the leak. They didnt know which stent was needed so whilst in surgery, they would examine the site via endoscopy and order the stent and fit it as soon as it arrived. A total shock as I was under the impression that this had been ordered prior and the talks and discussions with the team suggested that they were waiting for the stent to arrive.

Due to the leak any fluids consumed by me had gone through the hole, eaten through my diaphragm and into my lungs. What didnt enter my lungs cascaded down into my abdomen and attributed to my weight gain. When questioned with hospital staff prior I was advised that this was normal due to the volume of fluid through IV as I was NBM. It turns out it was because Id retained fluid, and developed further complications.

During surgery, 5 drains were sited to take away the infection, 4 in my abdomen and one in my back. It was a huge shock to me when I woke up, what I thought was a few hours later, but was in fact over a week later. Id been admitted to Intensive Care, and had received treatment for pneumonia and septecemia.

The stent had arrived 2 days after surgery, and was cited. However due to a miscalculation, I had to have a further stent fitted as this wasnt big enough to cover the leak. This slipped (stent migration) and found a new home across the base of my new stomach, blocking it off from draining. A further procedure was undertaken to fit a further stent off that at the base of my stomach to act as a slide and aid with drainage, and a further stent was fitted by the hole.

One by one, the drains have been removed except for one. I hoped that this would be removed a few weeks back as the fluid draining from it had drastically reduced from 600ml a day to 40-80ml a day. After having several central lines and TPN I was told I had to have an NJ (nasal-jejula) tube to provide me with the required sustenance as TPN was not sufficient. I was sent to endoscopy to check how the stents were positioned and determine if an NJ tube would be best or alternative method required.

It was determined an NJ tube was needed and I paid a second visit to endoscopy to have the tube fitted. Within a 3 hour period, I was hooked up to feed and things didnt feel right and I could taste the milky substance being pumped through the tube. I was told it wasnt possible, and the feed continued. When My consultant came round, he insisted that he flushed blue dye through the NJ tube to see if anything came out in the drain. He flushed it through, the drain filled up and the tube shot out my mouth. It hadnt been long enough and had coiled up from the bowel into my stomach. A second tube was fitted after the weekend and it had been noted that the drain was now collecting approx 500ml a day instead of the previous 40-75ml. When I questioned this I was advised this was normal, and could be due to a number of things, and not to worry.

The following day, the main man AK himself came to see me and advised that the leak had increased as everytime endoscopy had put the camera down my throat, it had pulled away at the stents sited by the leak and made the hole bigger. It is not an option to use more stents, to have further surgery as the stomach is too delicate to be restapled, sewn etc.. the drain would have to remain in place and I have to wait for the hole to heal naturally and the leak to stop itself.

When asked how long they expect this to take I was advised they did not know, they had never had a leak this severe. They had previously had another case they managed to "get away with" and the poor girl had had a leak for 6 months. At the rate of which I am leaking, they say it could be 6-12 months maybe more.

In the meantime, I have a drain sited in my left side between my ribs collecting any fluid that gets through the hole (99.9% saliva) and I am still nil by mouth.

Physically Im drained, emotionally Im a train wreck and borderline at the end of my tether.
 

TwinkleTwinkle

A Very Happy Bunny
Aw sweetheart :wave_cry: you really have been through the mill :(:( I hope you have come through the worst of it & soon feel much better. Thank you for sharing this as it shows that not every op is plain sailing. :wave_cry: I am sure you will be glad you had it soon though. Chin up darlin xxx :)
 

Yvessa

Well-Known Member
Having read this I am absolutely horrified by what you have been through and are still going through. I don't blame you for how you're feeling. Are you getting support from hospital/gp?
 

scooter81

Walking Disaster Area
I went to my GP yesterday who has told me that I need to take it up with the hospital, she cant treat me or do anything.

The hospital arent exactly helpful. Theres 3 consultants on my care team. One tells you one thing, then the other comes and tells you something else, then the third another so you never know whats going on. Im ashamed to admit this but I lost my rag with them and let rip an angry/teary rant that lasted 10 minutes and they all just stood there like the 3 amigos, arms crossed and told me that "now is a time of healing, you need to be strong so you heal faster and better because when your upset it delays everything... your upset because you cant eat...". Not exactly the answer I was looking for, but yes Im angry that I cant do alot of things such as dress myself, put my shoes on, wipe my own behind, walk my dog, goto work (as Im not covered by insurance with drains and NJ tube), ride my motorcycle, or the simpler things like have a glass of water or eat at meal time with my family.

It amazes me that when considering this surgery, theres psychologists and councillors all over you like a rash. The minute things go wrong, theres nobody to be seen. Ive requested to see the psychologist/ some councillor and been told theres not one to be seen. Having spoken to my family, were going to push this aspect further and harder at my appointment on friday.
 

chrisa

New Member
Oh Scoooter that is hsocking i am so sorry for you you have had a dreadful time hope you improve very soon xx keep us posted on your progress xx
 

vickylou

New Member
Gosh sorry to hear ur misfortune, hope u get sorted ASAP xxx
 

Cicca

New Member
Wow! Sounds like a nightmare.

Can't say I've ever heard anything like this before, the surgery has come so far it's hard to imagine this sort of complication could happen.

How's your weight doing now, imagine you've probably lost loads?

xx.

Sent from my iPhone using WLSurgery
 

MissyMustDoIt

serial cryer!!
i couldnt read without posting...i really dont know what to say other than i hope you are fit and well asap....it sounds like a nightmare xxx
 

Sharonimo

Sleeve to Bypass
Hi Scooter,

So sorry to hear about your major leak problems. There is another sleever on this forum who developed a leak about 6 weeks after her op, cathykats. There were quite a few posts from cathykats while she was feeling unwell (sick and high temperature and lots of left side body and neck pain), then updates from PeterboroughGuy who was in touch with cathykats and this was Cathy's post when she returned to the forum:

http://www.wlsurgery.com/gastric-bypass-rny-faq/144159-back.html

I think your leak sounds really serious, and if I had read about it before having my sleeve I might have actually chickened out. I have been very fortunate and healed well (for which I am very thankful).

Best wishes with your healing,
Sharon
 

angeeb

New Member
I'm absolutely appalled they didn't find the leak for 4 days and didn't fix it for 14!!
To me it sounds like such poor care, I'd have my guns blazing once I was healed.

I hope you are soon all healed though it sounds it may be a long process, my heart goes out to you :(
 

scooter81

Walking Disaster Area
Hi Scooter,

So sorry to hear about your major leak problems. There is another sleever on this forum who developed a leak about 6 weeks after her op, cathykats. There were quite a few posts from cathykats while she was feeling unwell (sick and high temperature and lots of left side body and neck pain), then updates from PeterboroughGuy who was in touch with cathykats and this was Cathy's post when she returned to the forum:

http://www.wlsurgery.com/gastric-bypass-rny-faq/144159-back.html

I think your leak sounds really serious, and if I had read about it before having my sleeve I might have actually chickened out. I have been very fortunate and healed well (for which I am very thankful).

Best wishes with your healing,
Sharon
Hi Sharon, thanks for your kind words and information, its really appreciated. Im glad all went well with your surgery, and completely agree that if I had known then what I know now I would not have gone ahead. Cowardly, perhaps but its not just the impact its had on me, but the rest of my family who are unlucky enough to get tortured as much as I do. The only difference is I get the 24/7 sicky feeling and the other side effects. I think its the impact on my family and knowing what pain theyve gone through too that makes it worse. I cant say or do anything to make them feel any better, and vice versa.

One thing it has taught me, is that I have a fantastic family, friends and its all been overwhelming. I just had to be that 1 in 800,000 who gets the leak. Just my luck.. on the upside, Ive saved an absolute fortune on groceries as Im still nil by mouth, so when its all over can enjoy a nice little break somewhere.
 

scooter81

Walking Disaster Area
Wow! Sounds like a nightmare.

Can't say I've ever heard anything like this before, the surgery has come so far it's hard to imagine this sort of complication could happen.

How's your weight doing now, imagine you've probably lost loads?

xx.

Sent from my iPhone using WLSurgery
I agree with you completely, this surgery has come very far. Im constantly reminded by the care team that I will be thanking them in 12 months time when Im a new me, and that I knew what I was getting myself into when I signed the consent form, and this is true. I was made aware of the possibility of leaks and told that these were extremely rare and easily fixed.

What i wasnt told was the nightmare Id have to endure or the way my entire life would be turned upside down should the leak be something more than the box standard leak. I feel that I may have been misinformed, and at the same time annoyed with myself and angry that I didnt investigate this subject further and took things at face value.

With regards to weight loss, its the last thing on my mind at the moment. Despite losing 64lbs from my pre-op weight in the last 6 weeks since having left ITU I cant seem to enjoy the loss. Its all over shaddowed by the leak. I try not to let it take control of things, but its a consistant thought with everything I do. ex. Getting dressed, going to the bathroom - I have to pick up the drain, the Nutricia Feeding Pump and food and haul it all down there. Im an independent person and have to rely on other people to help me put my socks and shoes on, get dressed. Help me to the bathroom etc.. Theres the constant nausea, the daily sickness, the aches and pains. When I do go out theres the questioning looks from people, the whispers and the inevitable awkwardness I feel.

Im not able to return to work as Im not covered by insurance, and have stopped receiving full company sick pay and now only receive SSP. So financially Im just breaking even and managing to save a little, intentionally for a break when this is over. Having gone from a full wage to SSP only I dont anticipate it will be long before I have to use what Ive saved to keep afloat.
 

Miss Tickle

Well-Known Member
This is a terrible thing that has happened to you and I'm very sorry for you. I received good care at Walsall but when they get things wrong, they seem to get them very wrong indeed. It's just not acceptable that they have been so slow to diagnose and treat you, and especially not have ordered your stent in a timeley manner. Much as you will come to appreciate the gift of WLS it does not negate this lack of decent care. I really hope you get some advice and take it further. Money cannot get you back these few months but it can buy you a good holiday and make up for your loss of earnings.
Mr Mizra operated on me. He appeared pleasant, but not warm, during the 4 minutes I saw him for on the day of surgery. He did point out the risk of leaks and say a leak would lead to spending 12 weeks in hospital during that four minutes. No one had ever mentioned such a thing to me before. I knew the risk, of course, from my own research.I do think the risks should be discussed way before you're sitting there in your elastic stockings and backless nightie!
I wish you all the best and hope things improve rapidly from here on in.
xx
 

Sharonimo

Sleeve to Bypass
when I signed the consent form, and this is true. I was made aware of the possibility of leaks and told that these were extremely rare and easily fixed.

What i wasnt told was the nightmare Id have to endure or the way my entire life would be turned upside down should the leak be something more than the box standard leak.

Hi again Scooter,

Before I went thru with my op, I had become aware of the possibility of leaks (but not really major serious ones like yours) and had read about cathykats' experience on here -- and went ahead despite that, knowing of at least one London based UK sleever who had had a leak.

I'm not sure that you were really misinformed -- people who encounter the worst and most serious complications from bariatric surgery are very very rare, but you are in the unfortunate tiny percentage of people who make up those statistics.

Since having been sleeved I have also now read online of an Australian lady who was sleeved in 2007 who developed a fairly major leak and was hospitalised for a few months while they fixed it (back in 2007 the sleeve was quite new and experimental surgery).

Despite everything she went through at the time, she now says she does not regret having the surgery, has lost all her excess weight and maintained for 5 years.

I can't post a link because this evidence comes from another forum .... but if and when you get your posts up to above 50, you can PM (private message) me and I can send you a link to the Australian lady's story if you are interested.
 

Andy1968

Member
What an incredibly sad story..i can't begin to think what you're going through:sigh:
I can only hope that you can get sorted asap and leave this nightmare behind.
Please Take care
Andy x
 

Fuffs

Shrinking Big Brummie
I hope this gets sorted soon. What a thing to have to go through xxx
 
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