Stasis 12 years after oesophagectomy (for achalasia)

[SurreyGuy]

Hi there. Has anyone else had this stasis problem after oesophagectomy. I was doing really well for 12 years then all of a sudden this stasis issue seems to have started. So far in the past six months I have had three dilatations of the pylorus. The first two did not do much the third was better in that it gave me five fantastic days. I felt invincible, now four weeks later it is all back to feeling really uncomfortable. I feel full all the time but I am not actually full as I can eat more and food goes through and I can tell from urine output that it all works (when i had achalasia my urine output would fall). I am just so uncomfortable. All the time. Has anyone else had this and if so how did it get resolved/managed? Thanks all.

[DaveChuter]

Hi,

Yes this can happen, I had 3 attempts at stretching using BOTOX but all short term, final go was by key hole surgery to open permanently which has lasted 9 years without an issue.

Talk to your consultant about this issue and ask if is an option for you.

Best wishes

Dave

[Paulbrighton]

Hi my go to medication is metaclopromide taken half an hour before meals. It really keeps things moving. I sometimes also use bitters (Amazon) half an hour before meals as a natural way to stimulate emptying.

Lastly, despite using these things, during chemo I have days when there seems to be little or no emptying. I close my eyes and imagine it emptying, I will it to, and sometimes this seems to work to get things going. It starts to gurgle and I feel better.

I hope that your problem passes.

Warm regards

Paul.

[Cortex1]

Hi!

I’m 12 years post Esophagectomy due to achalasia as well, I have trouble with food standing still also. I had a scope a couple of months ago which showed motility issues since there was food remains in my stomach. But they found no narrowing and food don’t get stuck, it just isn’t moving very well. At times this feels very uncomfortable and I have to throw up/regurgitate right after dinner.

Unfortunately I haven’t got any solution to this, neither do my doctors. There might be some medicines but they won’t give them because of their strong side effects.

As for you, I know (some) things are going through, and going rapidly, since I also have early dumping syndrome. So speeding things up probably wouldn’t help me, there’s still this issue with some food remaining while others pass through.

I guess this reply wasn’t helping very much, but you’re not alone. I’m looking for answers as well...

[SurreyGuy in reply to Cortex1]

No your reply was really supportive. It is good to know that others are grappling with the same things. I am no longer getting early dumping syndrome although i have started to get late dumping which i assume is due to the three dilatations. It is just so darn uncomfortable and i do worry about stretching the tube as this was the while reason I had the oesophagus out in the first place. Where in the world are you and did you also have yours for achalasia? Thanks for your post.

[Cortex1 in reply to SurreyGuy]

Yes, I had my esophagus out due to achalasia when I was 29 years old. I had then lived with achalasia for almost 20 years, with endless dilations and 2 hellers myothomy, one in 1994 and the other in 2003. Then ectomy in 2007 when I couldn’t eat anymore. How many years did you have achalasia before ectomy?

Oh, I live in Sweden, I guess pretty far from where you are?

[SurreyGuy in reply to Cortex1]

Sorry for late reply. I was diagnosed with achalasia when I was 21 but had had it for a little longer (took a while to diagnose). I had the oesophagectomy when i was 43. So, i lived with achalasia for many years and like you had Hellers myotomy, botox, dilatation after dilatation. The oesophagectomy was such a relief (once i had recovered). I guess there are not many people in Sweden with achalasia (it is rare enough in the UK). Personally, i dislike having something so rare as information is so limited. But, supportive to hear you have had a similar experience. Thank you.

[SurreyGuy in reply to Cortex1]

Hi there. I am due to see my surgeon this week to see how i have responded to dilatation 3. I generally feel rough all of the time. Can you relate to this? It is almost like my body has a slight dumping syndrome continuously by feeling weak and pathetic, slight internal tremor. And yet, i still have delayed dumping so i am constantly aware of food in my chest. I am asking as I am wondering if this is all related to the motility or if I also have something else going on? It feels like its the oesophagectomy but i am not fully confident. Any thoughts? Cheers.

[Cortex1 in reply to SurreyGuy]

I can relate very much. I feel the same, the dumping syndrome affects me more or less continuously. And even though it’s due to rapid stomach emptying, there are still pieces of food that moves too slowly, causing small inflammations. It’s very annoying and uncomfortable. At the moment I feel like it’s moving slower than usual, got no appetite at all and swallowing is a bit tricky. I think it’s always a worry whether all these symptoms are “normal” or if something else is going on. It’s not easy to tell. I guess regular checkups are necessary.

[SurreyGuy in reply to Cortex1]

Thank you. It is reassuring to find someone else on a similar pathway. I saw my consultant yesterday. He said they are only really seeing the long term effects of oesophagectomy now and are beginning to conclude that most people will end up with some motility issues. They are recommending i have a fourth dilatation with a 20mm balloon. They can go up to 40mm but not yet. The fact i had one very good week after the third dilatation is encouraging as it suggests stasis is my problem. He also suggested that they now realise many of us may run into nutritional problems and did a full nutrition screen. Whilst this could be contributing to me feeling so rough all the time (especially if low in some minerals) it is more likely to be a combination of slow food and fast food giving me stasis symptoms and dumping symptoms. It was a very positive appointment but very few answers as he acknowledged that there isn’t a lot of experience with our conditions. He also suggested that further surgery is possible but an absolute last resort. I wish there was a private way we could message as I do ‘t want to worsen other peoples anxiety who are behind us in their journey. For me, i had no choice, i had to have the oesphagectomy so I have to put up with all this for now. But as you say, it is seriously annoying. Thanks for replying and being around.

[Paulbrighton in reply to Cortex1]

I find metaclopromide really good to get food moving. Took it for s year without side effects and now just occasionally. Have you tried it?

[SurreyGuy in reply to Paulbrighton]

Thank you. Currently on metaclopromide. No side effects except my sleep is worse. Consultant wants me to try it for six months. I think it is helping a little.

[052517]

I am 3 years post surgery due to long standing achalasia. I have "profound." motility issues. I am on bi-peg 2x/day and Constella (not sure of generic name) 3x/week. If I can keep things moving down stream then I swallow food better. If the bowels are full they send an inhibitory signal to the stomach that say, no more food please. Even when the bowels feel empty, abdominal xrays confirm I am more than half full. Therefore, I think I am going properly but it is actually a "leak around"

[SurreyGuy in reply to 052517]

That is really interesting to read. Thank you for sharing. I often think that if my bowels are congested my motility is worse, nice to know I am not imagining this. Back in March I was prescribed antibiotics. I thought “yeh, right”. But, I was happy to take them. They caused chaos with thrush but my motility improvement was massive. The improvement was more dramatic than any dilatation I had received. My stomach had even started to gurgle again. It has slipped back a little since March but still remains improved on its previous condition. Your motility sounds very severe if you are on peg feed three years after surgery. Sorry to read that. It is very frustrating when you consider the years spent with achalasia and then learning it all over again.

[052517 in reply to SurreyGuy]

When I was first diagnosed with achalasia I was told there is NO connection between bowels and esophagus issues because they are different muscle fibres. My thoracic surgeon got me to the most amazing gastroenterologist. This specialist totally believed me that there is a connection. Have made significant strides in eating but without supplementation I lose weight.

FYI: metoclopropamide has devasting side effects for some people who take it long term.

I am glad to hear that most people can get over the eating hurtle.