just had esophagectomy for achalasia

Digestive health
1

Hi

Due to achalasia and having a mega esophagus that was bleeding and damaged after 3 previous ops, I had my esophagectomy on Feb 18th.

i am doing really well. I am a bit cautious about appearing too blaise about the op as I am aware that some people have huge problems and complications after it.

But for me, everything went like a dream. I suppose my age helps [am 45] and I have had 3 ops before to give me experience. I went in on the day of the op [Thurs]. The op lasted 6 hours and i was taken to Intensive care. I had the tans-hiatal version where the esophagus is removed completley and the stomach is pulled up into the neck.

I was awake and lucid afterward and remember talking to the nursing staff. The following morning I was sitting up in bed in ICU ringing people up and telling them how well I felt.

So they moved me to a private room in the main upper GI ward. Didn't even have a cannula as I had a jujostemony thing and all medicines went in there. Pretty soon was out of bed and walking around. The dreaded nasal gastric tube came out [yippee] It had been stitched into my nose to hold it in position [boo!] The surgeon came to see me every day. Something called the \"main line\" was removed from my neck on Monday and I had to lie down for half an hour after that so air didn't get in....

The surgeon came in on the Tuesday and said I could go home on wed - had some ice cream and soup and managed it ok. Left hospital on the Wed after 6 days a record for the hospital. Still had feeding tube in case It was needed. Had to wash it out with a syringe of cold boiled water every day - a strange sensation!

The first week or two had severe dumping basically poohing water due to food rushing too quickly through my stomach tube and being digested in the small intestine. Had to quickly learn what foods made it happen and avoid them for a bit. My appetite disappeared and I lost a lot of weight [about a stone and a half] .

Spoke to dietitian and was prescribe fortisip and Creon, and drug that is supposed to aid the body in absorbing fats. Went to see the surgeon who was pleased with my progress. They removed the feeding tube [yippeee!] started driving after 3 weeks. Slowly my appetite has been returning and have stopped the weight loss. The 4 weeks after the op we went to a restaurant for the first time. Unfortunately had diarrhea afterward, so was still not quite right there.

Am doing normal things at home trying to build up my strength and stamina. Am taking no pain killers at all. Have been signed off work til the end of April but hope to go back in a gradual return to work after that. I support people with mental illness like schizophrenia. Luckily my line manager is a former ward sister who used to nurse people who have had esophagectomies.

Everything that is happening to me is normal for recovering from this op and I am doing really well. Like i said, I don't want to be too dismissive of the risks and problems associated with this op, but I am doing well and am sailing through the experience. Just wish I could eat a bit more and didn't have to make sure I am near a toilet [although this will improve over time]

Its now 2 months since the op and I have been on holiday eating in restaurants [ordering starters as my main]. I have a card from the \"Oesophageal Patients Association\" saying this that I show to waiters. Still having the odd dumping issue but I hope to be back at work in a few weeks time.

Regards

tim

2

Hi Tim,

Your entry and experience makes very interesting and positive reading. I have Achalsia and a failed Hellers Myotomy carried out in 1996. since then I have been struggling by but regurgitating food many times daily. Recently requested and went to have an endoscope where consultant said oesophagus is out of shape and not working and the next stage for me is likely to be a oesophagectomy. Been referred onto Derriford Hospital in Plymouth.

How are you getting on now?

what complications do you have?

what is your appetitie like now?

do you have a reduced stomach capacity?

does it feel bloody wierd generally?

can you undertake sport?

I hope you are doing really well and look forward to hearing form you, or anyone else out there that ha had the op.

Kindest Regards

Jim

3

Hi,

This is Revathy. My husband have been suffering with achalasia for more than 20 years. Now he is in end stage to go for esophagectomy. We have appointment with surgeon today. He is in excruciating pain always. I am curious to know how you both are doing now. Jim, did u undergo surgery? How are you both feeling now? Tim, I really am looking forward to know how u are after 2years. Please drop few lines and I would be really grateful.

Thank u so much.

Revathy

4

Hi!

This is Tim again - just to let everyone know that I have been getting on very well 2 and half years after my esop hagectomy for Achalasia. I have been completely discharged from my surgeon. I can eat anything I want to. I take no medications other than iron tablets. I cannot eat very large meals but if you came to a resteraunt with me you would not know.

The scar on my neck has faded away. Very rarely [perhaps once in 2 months] I might get a little bit of dumping [too much insuling being produced in response to sugars] but I can sort that by taking a sugar cube or two, which uses up the excess insulin. I could do with putting on a bit of weight on though!

I have started a facebook group called "esophagectomy for Achalasia" to support others and we have approx 67 members. I have no regrets about having the op and would have it again in a heartbeat!

regards

tim

5

I am trying to get into the facebook group. I'm so amazed...something for everyone. After 10 years of thinking I had a "normal for me" esophagus following a heller and nissan, I now know that I have Barretts and a severely dilated esophagus. Oddly enough, I can feel food pass through the sphincter, I don't aspirate, I don't have spasms often, and I sleep flat with no problems at all. So now, after my upper GI, the gastroenterologist told my husband all of that, and also mentioned the possibility of esophagectomy. I am in shock! I just can't believe I can feel so normal and not be ok. ANyway, I hope more people are as successful as you, Tim. I am hoping I do not have to go this route. I am 62. I also know that if I wait 10 more years it will be soooo much harder then if I have to do the surgery. Oh, and I still have the wonderful 24 hour ph test to look forward to. I can still remember how much I LOVED that test before my myotomy, NOT. It was just 24 hours to get through. Each minute forward was another minute towards it being pulled out. Sooooo....after that I will finally get to have the options talk with my doctor. I just figured that if she even MENTIONED it to my husband, she must already be thinking that I need it. Oy. I had a small polyp removed, too. Sooooo....here i am checking it all out!

6

If you would like to talk to somebody who has had an oesophagectomy you could ring the Oesophageal Patients Association helpline on 0121 704 9860. Most of these operations are carried out because of cancer, but there are a lot of people in the OPA who enjoy a good quality of life many years afterwards.

The digestion system does need to adapt though.

7

Hi my name is Leo

 I'm look for a little advice, I had a esophagectomy two years ago now. I had a Heller Myotomy about eight year prior to this surgery. The prevoius surgery with the Helleo Myotomy didnt work at first with a nissen so when they went in to take the wrap down i bleed out somewhat and they had to open my stomach up to fix it. I was in the hospital for three weeks. I worked for eight years where i was dealing with Achalasia and getting to eat almost normal with some foods getting stuck.

Well two years ago the Achalasia had gotten worse and my esophagus stopped working all together and it was forming pockets, I wasn't able to get any food down or water for that much. I went though the surgery where they removed my full esophagus, my sleen also had to be removed as well as a quarter of my liver due to scar tissue. 

Well I've still been having trouble trying to eat, they did dialations once a month and couldn't find any strictures blocking the path and they can't figure out why I can't get food to go down.  This past Febuary they placed the feeding tube back in and said I will have to have it for life.

 When I was able to eat, it would hurt for food to go to the intestines, the have me on pain meds to keep me comtable and it still relly hard to be around anyone who eats and just going out to have fun, I can't keep food or liquids down.. I have tried everything, does anyone have any subjections.

 Are there any support groups as well...

 Thank You all

Respectfully Leo

8

Hi Leo,

Can I suggest you try the Oesophageal Patients Association, they have a really good help line in the UK and their web site is very good.  They have an online forum to get support also.  The facebook group I started now has 312 members, most of whom have had an esophagectomy for achalsia or are supporters of someone who has.  Search for "esophagectomy for achalasia" in facebook.

Hope this helps....

9

There is a forum on HealthUnlocked for the Oesophageal Patients Association.   90% of the patients who have an oesophagectomy have the surgery because of cancer, but the remaining 10% are for achalasia and other reasons.    The OPA also have support groups.   Their telephone number is 0121 704 9860.  

Eating out and with others will indeed be difficult.   At best you have to eat 'little and often' and there will be foods that cause you trouble for one reasons or another, sometimes unpredictably.       Some people suffer from colic (like babies do).   You might suffer from insulin spikes because of 'dumping syndrome'.   There are issues around the way that the vagus nerve is removed, and that changes a lot of signals to the brain for digestive processes all round.    There are also implications for stomach acid, stopping the acid by taking PPI medication and whether this creates bacteria in the intestines that can cause diarrhoea and so on.   But none of these complications are compulsory!   I think that diagnosing what you are suffering from is complicated, and some people do indeed have permanent feeding tubes.   I know of many people who have had oesophagectomies  who enjoy a good quality of life.

10

Hello Erasuretim

 Thank you so much for telling me about the facebook group, I've been looking for a support group since the surgery. I went on facebook and put my request in to join the group. Again thank you so much, being able to tak to people with the same problems helps allot. smile

11

Hi OPA_AlanM

Thank you for responding, when I had the surgery I was informed that they had cut all the nerves suronding the stomach. The beggest problem is when I eat any and all foods get stuck and luquids don't help it just makes me dump it qiucker. Because of the full removal of the esophgus, and cutting of the spinkder muscle at the bottom of the stomach, they said cutting the nerves would stop the stomach from producing any acid, I wouldn't feel hungry anymore or know when I was full, when I do try to eat something I just fill allot of pressure there and its uncomtable and as soon as I try to drink something to push it down, I end up dumping, I have to drink because if I don't when it trys to come back up it's hard and in a tube form with no fulids. There is no movement to help push the food thru. I do have dumping syndrome and that is a big problem beause I don't know how to fix it. I'm just glad I found this web site and the great people here to help me out, I have been looking for support for the last two years and here in the U.S. there isn't many groups because this is not a common thing that people have to deal with. 

Thank you again

Leo

12

When we feel hungry, it is a signal to the brain that is caused partly by ghrelin, that is produced at the top of the stomach, and transmitted through the nerve system.   So the surgery may have prevented you from feeling hungry in the way you used to.   So you have to get used to eating by the clock rather than by how you are feeling.   But my advice would be to eat very small amounts.   Do not try and eat anything like a normal size meal.   Some people eat 6 or 7 times a day, or simply 'graze' on small items.

The dumping syndrome is caused by insulin spikes.   Avoid any food that has sugar in it, artificial sweeteners or anything ending in -ose.   Your system will generate loads of insulin because it is tricked into thinking that it has a lot of sugar to deal with.   Try low glycemic food, and eat as if you are a diabetic.   You are probably not diabetic but their food also solves this problem too.

There is some usueful information about all of this on the website of the Oesophageal Patients Association under Resources.   I cannot put the link on here because the system does not accept them!

13

Okay thats good to know because every since the surgery i have had this dumping problem. They told me to eat ice cream but that cuases me to dump right away. Ill go to the web site now and check it out... 

Thank You

 

14

This is pretty great and music to my ears. I have had a previous surgery and am now looking at an esophagectomy. I have seen 3 surgeons trying to see if  there is another way, but all roads keep leading back to Rome. I do not like the dumping and diarrhea but hopefully I can fugure a way to overcome that. Like you this surgery is not an option, mostly a neccessity. My esophagus keeps getting infections and ulcers from the food sitting there too long.

15

If you go on the HealthUnlocked site you will find the oesophageal patients assocation community there worthwhile.   The 'dumping' is often connected with diet and insulin balance and can be mitigated by eating low glycemic food, as if you were diabetic.   And the diarrhoea is not suffered by everyone by any means, and, at its worst, needs treatment with antibiotics by a knowledgeable gastroenterologist.  

16

Hi, Tim,

I've had achalasia for 50 years. Long story of pain. I had a Heller's Myotomy in 1990 and another myotomy with fundiplication in 2010.  Now I am in advanced stages and doctors are recommending esophagectomy for last 3 years. I keep hoping there is another solution. 3 years ago I talked to a patient who was postop 6 weeks. He was having a lot of acid reflux. The stomach tissue includes "chief cells," which are the mechanisms that create the acid. Do the chief cells continue to operate once the stomach becomes the esophagus? Does the procedure leave some portion of the stomach intact? I am concerned about continuing to have acid washing up into my upper throat and mouth. How are you doing today?

Diana

17

Hi Tim,

Great to hear your periodic reports of post-op experience with oesophagectomy.  My op is scheduled for July, and I certainly hope to share your positivity when August comes around....  And I'll be joining the Facebook group asap, to keep in the loop and share the news and views of fellow travellers....

Regards,

Mick

18

Hi Tim, how are you now after your esophagectomy for achalasia?

I have the same situation: achalasia with megaesophagus, after several myotomias and dilatations ...now I am recommended to esophagectomy for achalasia.

I am scared about the complications.

Thanks for answer.

19

An oesophagectomy is major surgery so it does need careful thought.   I have known quite a lot of people who have had this surgery.   It invariably needs quite a lot of adjustment to eating habits afterwards, but  a good many people do not have any of the  complications..   It is not  something to go in for unless you have to,  but you have probably reached a point where you will be better off.   The Oesophageal Patients Association caters for people who have had this surgery.

20

I'm glad to hear your results I'm 58 years old and about to have my esophagectomy November 21. I'm scared as hell im don't think my wife and kids know what is about to happen to me. I'm not showing me being scared in front of them when I went threw chemo an radiation for 5 weeks they both couldn't sleep seeing me nauseated and throwing up. I'm in pretty good shape so if operation go's good I believe I'll have a fast recovery. So thanks for your input.