Gastroparesis

[scooby2010]

6 months post op for esophagectomy. I was ok until about 3 weeks ago. Pain now the moment I eat or drink more than a sip of water. Dr. said I’ve developed gastroparesis and his solution is to cut my pyloric valve. The top valve was already taken during the esophagectomy and now he wants to clip the other valve. So basically the food will have a straight shot thus opening me up to the possibility of even more dumping. Not sure if I want that to happen. Anyone else experience this? My friend who works for another GI doctor doesn’t thing I should get the procedure done. I feel like my doctor is basically finding quick solutions and not taking into account of what the long term effects for me will be. Almost like a series of process of elimination surgeries to see what works while I’m the one being the guinea pig.

[Mauser1905]

Personally,

6 months is way too early to do corrective surgery as New Normal Anatomy had had not enough time to balance itself.

Perhaps others treatment options such as medications, electrical stimulation and newly developed botulinum toxin injection.

Some patients have mentioned "stretch" through endoscopy of this valve helped for few months to later longer periods.

NHS you can try second opinion if you are not comfortable with what is proposed, as this is a major change in your anatomy.

Also try probiotics for some time to see if that helps.

[scooby2010 in reply to Mauser1905]

My doctor said to stay away from probiotics, not sure why. I’ve had 2 dilation’s so far. It doesn’t hurt or feel like food is stuck as I’m eating, the pain begins the moment the food gets into my stomach, even liquid. I’m definitely going for a 2nd opinion.

[Mauser1905 in reply to scooby2010]

Ok so you had dilations already and still not help. Dr May have noted something for his reasons. But if I were you, I would ask the logic behind staying away from probiotics. Also you may engage with Cancer Nurse Specialist to help you on this issue to gain more information.

Pain could be for variety of reasons. Only you and the GI team will know what diagnostics leading to the surgery direction.

What I can say is everybody is unique as individual and the post oesophagectomy recovery is highly subjective amongst survivors. Bit amazed myself as to this quick turnaround of a surgical solution within 6 months of the surgery and two dilutions.

Offcourse the surgeon may not suggest it unless he or she deems it is the best option, given the current backlog of GI appointments and procedures. Hence whatever I may suggest here is purely reading between the lines, non qualified medical opinions only.

As long as you can sustain your nutrition and stabilised weight without issues till you get second opinion, then it may be useful to clear the doubts in the least. On that side I am bit skeptical on how quickly you could get a second opinion given current situation. Meaning you would be in for a rough ride for long time.

On that note your current GI team have done dilutions and offering a surgical fix is very assuring that you are being looked in very efficient time manner, offcourse coivd situation considered. I would suggest going back to your GI team with your CNS with you to mention your concern you rightly stated and have more detailed consultation before making your mind on whats the best approach.

Really split on this one here, as both ways seem helpful.

[Charleysjamn]

For clarity, is the pain in your abdominal area? I had excruciating pain after eating every meal but the pain was in my left shoulder! My oncologist called it “referred pain”. Too much to explain here but Google it. A good example is when you have pain in your jaw when having a heart attack. It was really painful. Doubt this helps, but I haven’t seen anyone else post about that kind of pain. It quit after about 9 months.

You may have a bigger problem with dumping if you have the procedure you mention.

[scooby2010 in reply to Charleysjamn]

The pain is definitely in my abdomen.

[Charleysjamn in reply to scooby2010]

I hope it subsides or they find the cause. Good luck.

[Popsic]

Hi there,

I am 7 and a half yrs post op, I used to get excruciating pain after eating, I couldn't move with it, eventually I was put on Creon tablets, you take them every mealtime, the pain started to ease and now I don't get any, only if I over eat 🙄 it's worth having a chat with your cancer nurse,

Hope this helps.

[052517]

I had gastroparesis: medication prucalopride helps stimulate the stomach. I was placed on low fibre diet until it resolved (10 months). Also, flushed out the colon. If it is at all full then inhibitory signal is sent to the stomach telling it not to empty. I had a pyloroplasty 20 years before oesophagectomy: wouldn't be my first option for treatment as there is no going back after surgery.

[jay2908]

Hi Scooby,

Options might include..

1. Temporary Nasogastric feeding tube (they’re brilliant in my opinion).

2. Thought metoclopramide was regularly given to help with this? Ask your doctor...

3. Are you feeling bloated? If so, have a warm/hot drink to see if helps clear a path, especially if you’re Feeling constipated.

[scooby2010 in reply to jay2908]

I’ve been on metoclopramide for the past week and a half and it’s made such a difference. Unfortunately it’s not a long term medication and the doctor said if that helped then that means the pyloric surgery would be needed for long term help. I’m also having a gastric swallow test done next week that’s 4 hours long so they can watch the food I eat as it moves throughout the digestion process.

[DISC]

I have heard that if you have any constipation issues along with your gastroparesis that cutting the muscle causes a build up of food that causes further issues. i was offered this procedure and decided against for this reason? Ive now been offered the POEM but this is very trial and error too? I do not want to live via a feeding tube but I am struggling. I have a PEG tube to vent from which is a godsend though for the pain and swelling. I would recommend that!