Gastropersis after surgery

[Smithyrat159]

I had oesophagectomy last November, then had difficulty with tolerating food and spent 5 weeks in hospital with a feeding tube. After discharge, still with the feeding tube, I began to be able to slowly introduce food and am presently up to about 1000 calories, small amounts over the day. However I am in constant discomfort in the chest due to the food moving so slowly through. It feels like a great weight on my chest. Has anyone been through gastroperesis and come out the other side? It feels like I'm never going to get better

[petercaron]

sorry you are having these issues. I am 5 1/2 years post esophagectomy.

Has any of your doctors recommended you consider have an endoscopy to see if your newly created esophagus needs what they call a stretch?

I have had a few of these stretches over the years since the surgery. The procedure is usually done to help your food move down faster. Sometimes you can also possibly have a constriction where the new join is. I forget what that join is called, but it were the new esophagus made from where your stomach is attached to what they didn’t remove of your esophagus.

I am sure you understand that using your stomach as your esophagus, that part that’s your stomach , is not capable of peristalsis to move your food down quickly.

[Smithyrat159 in reply to petercaron]

Thanks for your reply, my consultant hasn't mentioned stretching at all, just putting me on metachlopermide which isn't working and seems to give me balance issues. I see him again in 3 weeks so I'm hoping he can suggest other options. Does the stretching work to help food go down faster?

[petercaron in reply to Smithyrat159]

It absolutely improves swallowing. Here in the states they put us to sleep for the procedure so it is so easy. One time my doctor injected Botox in one part of my newly formed esophagus, and that also helped. I have probably done this 4-5 times each surgery My surgeon told me that some people need this at least 1-2 times a year for a couple of years

If you haven’t had one yet, also ask for a swallowing test. You swallow liquid (barium), then various small pieces of food soaked in barium so they can see via fluoroscope how the food goes down. They will start after liquid with very soft food and progress to a little harder like peanut butter on a cracker.

Good luck on your recovery. Push the Drs hard!

[Planthead]

Agree with Peter, I am 10 years down the line, it could be you need a stretch, you definitely should have a scope, regardless. Have you been given some gastric mobility medication. Also, if you are not doing any exercise, please start, you have had major surgery, with nerves cut and the body rebuilt, it needs some "internal massage" to get the body flowing and reconnected, simple stretches, tai chi, or Qigong, are excellent, for upper body realignment and internal massage, look up the movement "swimming dragon", which is very good for the internal massage. All these are done by elderly Chinese for health. You-tube is a good source. The swimming dragon actually helped me to move a stuck piece of meat, in the oesophagus, just hours before I was to have emergency endoscope, as I couldn't swallow, I then had a stretch, and its been fine since. Then when you are comfortable, move on to more weight bearing, body or dumbells, walking fast and long are good, purposely swinging arms. Watch your diet and try and get some sun. It does get better, but you have to help yourself, and the pharmacist may not be the only solution.

[Smithyrat159]

Thanks Planthead, I have begun walking again although not on the fells, just flat and I'm slow. I used to work out with weights, low and many reputations but I darent try that yet. I will look at your suggestion as it's not something I'd thought of. I don't want to take medication continually so would rather seek out alternative solutions. I still have the tube in so endoscopy might not be possible yet. My consultant who did the op has just retired so this next appt is with someone else which is making me a little more apprehensive. Thanks for your suggestions

[Planthead in reply to Smithyrat159]

Cheers. Get back on the weights, as soon as you feel confident, I started back by using resistance bands, still use a mix of bands and dumbells. I find I shed weight and muscle mass too fast. I'm 65. Do you have access to any maggies cancer support, I know they do Qigong at the Royal Marsden one, where I was treated. It's possible your vagus nerve was cut, so that means a loss of signal from gut to brain, you have to turbo charge the recovery, A simple beginners excercise.

youtu.be/eom81k6floU(Not working as expected?)

You could be prescribed domperidome, although it's not popular, I still take a tablet a day, especially after a big breakfast.

Keep going lots to try, don't give in.

[SurreyGuy]

Hello there. I am 16 years post surgery and I am very familiar with what you describe. I agree with the other replies about having a scope if you can. But, to cut a long story short my surgeon (who has been fantastic) referred me to the gatro team as he acknowledged they were better placed to interpret the physiology. The key of course is being referred to a gastro team who are very familiar with altered physiology. i.e. work in an upper GI specialist centre. This has been a great experience, it took a few years to work out what was going on and a combination of treatments. I am now in a much better place. So, my advice, is to try and ask for a gastroenterologist opinion. They may of course want to do a scope first to see what they are dealing with.

[Smithyrat159 in reply to SurreyGuy]

Thankyou very much for your reply SurreyGuy. It's great to know that there are solutions but it may be that I have to be more proactive in asking about them. I will wait to see what this new consultant suggests at the end of April but these replies give me some ideas of how to direct the conversation.

[Deeedals]

hello, I was sorry to hear about your issues but understand fully.

I had my oesophagectomy almost 2 years ago and was doing fine with very few problems apart from the odd dumping syndrome episode. Then 5 months ago my bowel ruptured up into my chest resulting in emergency surgery . I was in hospital for a month because I kept vomiting after any food. They did 3 stretches during that time to very little improvement and conclude that I have gastroparesis.

Have your team suggested motility or pro kinetic drugs. This has helped me immensely. I’m on Erythromycin which you’ll have heard of and know as an antibiotic but research has shown that in our world of upper GI it works in cases of gastroparesis. There are a few others too but I can’t recall their names, they didn’t work for me.

I can’t eat many things or much at a sitting so I’m mindful of the quality of my diet but at least I don’t have that giant sitting on my chest all the time.

Hope this helps, let me know how you get on

[Smithyrat159 in reply to Deeedals]

Thanks for your response. I'm sorry you had further problems, it sounds horrendous. I was on erythromycin in hospital but it hasn't been suggested since. Again it gives me an idea of something to pursue with my new consultant. Reading about everyone's own experiences makes me realise I have to try other avenues myself and that there is a solution out there for me, I just haven't found it yet. Thankyou Deeedals

[052517]

Coming up to 6 years post op, honestly the first couple were quite a mystery. I agree with Surrey to get a referral a gastroenterologist. Personally, if I keep my bowels super empty then the gastroparesis settles down, and swallowing is easier. I remain on a long term feeding system; allows me to maintain a very active lifestyle.

[Smithyrat159]

Thankyou so much for replying. I will discuss gastroenterology when I next see the consultant along with other suggestions from everyone else. It's so good to hear positive stories

[Racerrick]

I had gastroporesis with beazors. Slowly getting better . After about three years I haven’t thrown up. Still get reflux sometimes as I take pantoprazole twice a day. Most reflux happens at about 0309 just like before Ivor Lewis. So I’m thinking it’s always been and just chew a couple of alka seltzer chews. But also that is about the time I find I have slid down in bed so I raise my bed more and scoot up again . I can’t figure out how to stay up.