Stomach stricture - possible removal of full stomach WHAT?!

[Kate207 3]

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.

Edited September 27, 2023 by Kate207
Added information

[SleeveToBypass2023 2,682]

2 hours ago, Kate207 said:

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.

RUN, don't walk, and get a 2nd opinion. And a 3rd. As many as you need to get to the bottom of this. This is your health and your life we're talking about. And it sound like these doctors are pulling a CYA (Cover Your A$$ ) instead of actually addressing what happened. Explanations for procedures performed don't change. They did what they did, and any doctor in the field should be able to look at your imaging and records and know exactly what was done AND communicate it to you the exact same way every time. This smells rotten to me, so definitely find someone else to tell you exactly what's going on.

[New To This23 102]

Can you get a second opinion? If so please do, and also ask the new Doctor what exactly the first medical team did, so you know that information for sure.

[summerseeker 2,421]

Go to your local doctor and ask him / her to look into this for you. You need a second opinion as others have said. Your own doctor will find you one. If you do not have faith in the original ones, run away.

A regular stricture is an easy fix and I am so sorry that you are having so many problems

[RickM 1,753]

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.

[TiffanyY2 6]

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

[Kate207 3]

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.

[Kate207 3]

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!