Kate207

On 9/28/2023 at 6:40 PM, RickM said:

You certainly need to get a second, and probably third, opinion to find out what's going on; they should be able to explain to you, in layman's terms, what your situation is and what the options are for treating it. That is usually a straightforward and insurable step here in the States, but I don't know what hoops you may have to jump through in the UK. It does sound like something's not right in what they did (which is why you want a second, impartial and uninvolved opinion,) as strictures are not common with sleeves that are done correctly; they are common and easily treated with an endoscopic dilation in and RNY, and that may work with a sleeve stricture, or may not depending on what caused it (usually a misshaping of the sleeve.)

I did quite a bit of research on these topics a few years ago when they found a cancerous polyp in my stomach; fortunately it was very early and all treatable endoscopically, but all of these various options were discussed and researched. There are some Facebook groups specifically for patients with partial or total gastrectomies, which is what they are proposing for you.

The most common approach here, and what it sounds like they are proposing for you, is a Billroth 2 gastrectomy, which has been around for about 140 years, and is the basis of the RNY gastric bypass, The main difference between a partial or total gastrectomy is whether they can use some of the remaining stomach to form an RNY like pouch (partial) or remove all of the stomach and attach the esophagus directly to a loop of intestine, or an additional roux limb as in the RNY, and form "stomach" pouch in the intestine where the esophagus is attached. So, going without the stomach is possible and entirely livable (there are several books on Amazon about "eating without a stomach" which go over what is basically a normal bariatric diet progression.) To the surgeons I was dealing with (at a major regional cancer center,) the total gastrectomy was a much bigger deal surgically and recovery wise than the partial, as attaching the esophagus directly into the intestine was a much touchier procedure with a more extended recovery and healing time (on a feeding tube for several months,) than going through even a small pouch of stomach tissue - something else to consider with whatever choice you have in surgeons (try to find one who has done a lot of these.)

One of the things that stood out as fairly common amongst the Facebook group was problems with bile reflux, and you can see how that could easily happen by looking at the altered anatomy. The surgeon I was dealing with said that he did not experience those problems if he kept the various limbs within certain minimum lengths (which presumably some other surgeons didn't do in order to minimize malabsorption and weight loss,) so another point to consider in finding a surgeon who has some direct experience with these problems.

Thank you so so much for this!

On 10/3/2023 at 2:15 PM, TiffanyY2 said:

This scares me a little. I have been have a slight pain in my left side under my ribs.

Please try not to worry. This pain is excrutiating and the hospital has a bad reputation. I'm sure its very rare for something like this to happen (whatever it is). Something has gone wrong and they're not telling me. Healing prayers to you.

I am absolutely terrified today after seeing my consultant. I had gastric sleeve surgery 26/07/2022 not for weight loss but to remove a stomach tumour.

January this year I started getting stabbing pains under my left rib but wasn't really having any nausea, sickness or difficulty eating and drinking.

After a CT scan in May and an endoscopy in August they found my stomach is strictured/stenosis.

Today my consultant has told me the only option is to remove my stomach fully and sew my esophagus to my bowel. He said stretching it is not an option. I have an odd feeling (numerous reasons why) that they botched my operation and are trying to skirt around it. My consultant and surgeon keep changing the story. Like only an insignificant amount of stomach was removed. Then it was a full gastric sleeve performed. Then only a tiny amount removed again. Then the tumour was a GIST (sarcoma cancer). Then its just a benign tumour caused by pancreas cells. I've never known such confusing, arrogant, unsympathetic and clueless consultants and surgeons before - they're very worrying. Especially considering my surgeon is also doing private work for Spire.

I'm absolutely broken. Any advice or anyone that has had a similar experience would be appreciated.

As a side note this hospital in Liverpool has now given me a fear of hospitals. I was put on an oncology ward which I've been in before in a different hospital. I've always been a regular at hospitals over the last 20 years with pulmonary embolisms, 2 cancer scares, chronic illnesses etc and its always been a pleasant stay (even after surgeries) and a bit of a break and a chance to get some rest as I have 3 children. While in this new hospital after surgery it was like a third world hospital. I was lay in someone elses stale urine for a week before they agreed to change my putrid mattress. I caught scabies on my arm and oral thrush that spread to my esophagus and lungs. There was no shower so I had to wash myself daily in the sink. Finally they allowed me to use the mens shower as there was no womens shower which was literally just a shower cubicle with a door leading onto the corridor, nowhere to hang your towel or clothing and due to a blocked drain the floor/tray was flooded so my feet were in stagnant Water along with my towel and clothing on a carrier bag on the floor/tray. By the end of my shower everything was soaking wet so I had to "get dry" with a wet towel and put on wet pyjamas before going to my bed and putting the curtain around to get properly dry and changed again.

I had pneumothoraxes under my diaphragm and collar bone but was given the wrong and tiniest amount of pain relief. I was left to withdraw from my daily medication that I've taken for 5 years and left writhing in agony with the gas pain, pneumothoraxes, parasthesia and an intense burning sensation through my veins along with a massive headache, vomiting and aversion to light. No one would listen to me to help me to get my pain level under control and I could go on and on about the lack of care and the feeling of death and impending doom on this ward.

Been having the same issues. I'm being checked for low B1 Thiamine as this can affect brain function. Due to me not getting enough down and sometimes having dumping syndrome I presume its malabsorbtion and I haven't been getting enough Vitamins etc. I never knew it was so important. I keep going dizzy too. Healing prayers!

Thanks for everyones replies. I thought I might add that my sleeve was for the removal of a tumour. So my goal wasn't to lose weight and I was given no aftercare advice on food intake or liquids etc. My goal has always been to gain weight as I was already underweight when I had the sleeve.

Quick update. I got the results of my ct scan today. It shows my stomach is dilated and distended? Maybe not emptying properly so they'd like to get me in for a barium. Could I have stretched it? Does anyone have any info on this please?

Still having the pain on and off. It seems to come in flares lasting days and then easing off. Weirdly seems to flare up if I take paracetamol or cocodamol so I've been avoiding those.

Will check back in as soon as I have any other news. Hope everyone is keeping well.

Around 5 months ago (I would've been 5 months PO then as 10 months PO now) I started to get a sharp constant stabbing pain under my left rib. It has come and gone over the months and I mentioned it to my consultant who ordered a CT scan which I'm still waiting on the results for.

But its really gotten worse over the last few weeks now radiating to my left shoulder making breathing painful. I've had some nausea and sweating with it also.

I went to A+E and all tests came back fine. X ray showed a build up of poop so they diagnosed Constipation and after some suppositories I had a full clear out. The pain continued.

Ended up in A+E again and they're stumped. Ruled out heart attack and blood clots etc and sent me home.

I chased up my CT scan results today but they haven't looked at them yet.

Has anyone experienced this? I keep seeing gas pain in search results but could this really be gas again? I thought I was over the gas pain weeks out. This feels a bit different.

2 hours ago, RickM said:

There are some Facebook groups specifically for people who have had gastrectomies, both total and partial, and that may provide better context and patient experience than a basic WLS group like this.

That said, it sounds to me, in my non MD view, that you may have some kind of stricture, where the stomach has twisted or folded over in itself owing to it now odd geometry; the sudden onset leads me to this type of conclusion. What you have had surgically is not a classic sleeve gastrectomy (most likely, at least) but rather some variation, particularly if they were trying to minimize the amount of stomach they were removing. That puts it outside the normal bariatric experience base. Frequently what is done in these cases is a partial gastrectomy that is more akin to an RNY gastric bypass, where they remove the lower part of the stomach including the pyloric valve, form a pouch with the remaining stomach and tie the exit some distance down the intestine. This, of course, depends upon where the tumor is, how much they need to remove, and surgeon's preference and experience.

We rarely see these problems these days with a conventional WLS sleeve as they are fairly cookie cutter and routine once the surgeon has done a few dozen of them, but it does happen occasionally early on owing to inflammation from the surgery, but that usually resolves itself in a couple of weeks or so. The RNY type procedures are somewhat prone to strictures around the joint between the stomach pouch and intestine from scar tissue if that is the type of configuration that you have. The endoscopy (or a barium swallow test) should provide some answers, though I am a bit surprised that they aren't expediting that considering the situation.

Hopefully you can get some answers soon.

Thank you for this. This really makes sense! My consultant explained a few days ago that it was the lower part of my stomach that was removed although thats all he said. They never really go into much detail. I'll ask about the pyloric valve as I think you're right on this.

Regarding the twisting this also fits. I never suffered from this slime or reflux until approx 3 weeks after surgery. I stupidly chugged back approx 750ml of a litre bottle of milkshake quite fast and instantly felt sick. I had extreme pain in my stomach so I went and lay down. As I did I had this strange muscle spasm in my stomach followed by a weird flopping sensation inside. Exactly as if my stomach had moved position. Thats the only way I can describe it.

I was going to go to A and E but held off. The pain eased. The sickness went away. Then that night. Slime. And slime ever since :/

5 minutes ago, liveaboard15 said:

Ok so you did not get weight loss surgery for the weight loss. It was due to this tumor on your stomach. Ok now i get ya. You may need to end up getting revised to bypass if your reflux is getting this bad. Its always a fear for most that get the sleeve on having to revise it to bypass and its something i fear because my insurance does not cover these surgeries. Maybe talk to your doctor about other PPI medications. There are better ones than Omeprazole.

Thank you. I feared this would be the case :/

I've been tried on possibly every PPI. The pharmacy has also refused my surgeons request to put me on liquid omrprazole so I at least get the full dose as its too expensive.

1 minute ago, liveaboard15 said:

what is your weight and height? Why did you get weight loss surgery if you were already underweight and on a permanent liquid diet due to other health issues?

I had a tumour growing on the outside of my stomach that needed to be removed. As it had grown right through the stomach wall I had to have a sleeve to take it out. Thry originally planned to just take a small wedge but the tumour was bigger than expected when they operated.

I'm 5 foot 4" and currently 48kg

Hello :-)

I'm 9 weeks post surgery and honestly this has ruined my life I don't feel this is ever going to stop and I'm so scared.

So my story is a little different. I had a laparoscopic gastric sleeve because I had a benign tumour growing on the outside of my stomach. My gastric sleeve is a smaller op than normal because they didn't take as much of my stomach away but I can't understand why I'm suffering so badly.

Due to other health issues I've also got dysphagia and have been on a permanent liquid diet since 2016 and already very underweight. This is unrelated to the benign tumour and still being investigated. I never had any issues with acid before surgery.

Anyhow, after surgery I was doing really well. The first few weeks I was building up to 4 300ml ensure shakes a day quite well. I felt great but this might have been the painkillers I was on for a pneumothorax. I wasn't taking the anti reflux medication as they couldn't prescribe it in liquid form and the orodispersable ones had hundreds of tiny hard capsules in them which made them difficult to swallow. But I was ok. No reflux problems.

Then suddenly everything changed. I started getting the general foamies at first. Which I could deal with as they were quick in passing and after a google search I eased off the ensure shakes a little, drank more slowly and drank more Water. I was started on omeprazole capsules that I have to open up and dissolve in water so I'm not really getting the full 40mg of it. I never miss taking this though. Over the past 6 weeks its gotten to the point that I no longer have foamies I have this constant thick sticky slime in my throat which is so bad I'm now losing sleep due to waking up choking and trying to hack it up.

Every night is a nightmare. I go to sleep and start producing more thick slime and breathing in acid that I wake up choking and covered in sweat. I'm panicked trying to get the slime up to breathe, coughing up acid, gagging, choking on the slime, gulping on the huge lumps of slime that I can't hack up or swallow and sometimes vomiting.

Its now gotten to the point that I'm living on a few cups of tea a day and water as I can't get the ensures past the slime during the day. Even an empty stomach has made no difference.

I saw my surgeon and nutritionist finally a few days ago who treated me like I'd had something as simple as a tooth extraction and were unbothered by my weight loss, the fact that I can no longer get ensures down so I'm basically not eating at all and that I'm becoming depressed dealing with this choking slime and acid despite taking omeprazole. He's scheduling an endoscopy but in the meantime I'm honestly just so done with dealing with this. Its completely ruining my life. I can't eat, I can't sleep and I'm tortured every second by this choking slime in my throat. I have a young child to look after and I feel so tired and panicked daily.

Has anyone dealt with the slime constantly? Rather than just when eating too much? Has anyone found a way to reduce stomach acid if already on anti reflux meds?

Thank you in advance for any replies.