Kate207

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.

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.

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.

I have Sjogren's Syndrome. Mine is moderate, mainly causing a lack of moisture in my mouth, sinuses, throat, and eyes. I take OTC guaifenesin (generic Mucinex) to help thin down the mucus in my throat. I had the sleeve on 9-1 and have had "the foamies" more than I have ever had. Often after I drink a Protein Shake. "Foamies" is such an accurate description! If I miss even one day of not taking the guaifenesin I get this awful "plug" of slimy mucus in my throat that basically chokes me until I can get it up and get rid of it. I have had this problem for years, finally I went to an ear, nose, and throat dr that correctly diagnosed my problem and put me on guaifenesin. This is not medical advice, just my experience. Maybe finding a different kind of doctor would help, as it did with me. Best wishes to you.

Sjögren's is a systemic autoimmune disease that affects the entire body. Along with symptoms of extensive dryness, other serious complications include profound fatigue, chronic pain, major organ involvement, neuropathies and lymphomas.

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.

In the first few weeks after my bypass I kept choking on slime in my throat and that was also coming up when I was heaving. The surgeon said that I had a lot of mucus and that's what was coming up.
I wonder if Carafate is something would help the acid issue you are having.
Good luck, I hope you find some relief.