Life after treatment 3.5 years on.

[Aussiepete]

It's heartening to hear people reflecting my experience some 3.5 years on.

The small issues we have are a small price to pay for still being here. However, I'm trying to work out how to live more effectively with our "issues" and would really appreciate your thoughts and experiences.

My surgeon and oncologist have been amazing throughout this. However, it sometimes feels like they are a little remote from the whole thing and don't really have the answers I need.

I do have some dumping issues but not noticeably from fat - I take Creon and if eating something particularly fatty take an additional tablet or two - this seems to help. Sugar is definitely an issue and I do experience what I call hypoglycemia even though my surgeon doesn't concur.

I do have issues with loose stools - I've seen some posts where people have blamed creon for these - I found creon to fix a load of other problems but perhaps I'm wrong.

I do continue to experience pain along my ribs (they damaged intercostal nerves on ribs 4 and 5), around the drainage holes on my rib cage (I still feel that removal of one of the drains literally hit a nerve which has exacerbated the pain) and around the incision on my right shoulder blade - I'd be interested to hear if this is consistent with you all and what (if anything) you find that helps.

I am of the opinion (surgeon disagrees) that the pain in my shoulder is correlated with food (intake, composition, volume, frequency) but am yet to crack the optimal balance.

Removal of the top of your stomach eliminates the "glands" that release ghrelin and therefore we don't have an appetite - I genuinely struggle with work/life/diet balance and frequently forget or am unable to eat frequently enough - this most definitely results in pain.

I continue to experience issues with bile production - can't quite crack what's causing it. Sometimes it's not sleeping at the 45-degree angle, or slipping over to my left side while I'm sleeping (right side is ok). Sometimes it's too much food, or too little food or going to bed too quickly after eating. Anyways, I have periods of time (perhaps 3 consecutive nights each fortnight) where I wake up with a mouthful of bile and then spend hours vomiting bile. Sometimes I wake up having aspirated bile into my lungs - small amounts are "ok" - large amounts bring on pnuemonia. Does anyone else have this issue ?

My only gripe is that even though my partner has been incredibly supportive our home life (we have one 6yr son and are about to adopt a second 9month old baby) is quite hectic - we both work and there is little/no allowance made (or is possible) for me. If I have a bad night I still have to get up in the morning and help get breakfasts, school clothes, etc ready and then go to work myself. There is little point in complaining - I basically have to get on with it. Trying to run with a 6yr old on the way to school when you're in agony is no fun. Again, a first world problem and at least I'm alive to have it !

[Mauser1905]

"I do have some dumping issues but not noticeably from fat - I take Creon and if eating something particularly fatty take an additional tablet or two - this seems to help. Sugar is definitely an issue and I do experience what I call hypoglycemia even though my surgeon doesn't concur."

I sometimes get hypoglycaemia (Blood Glucose below 3.7mmol/L) when going hungry for long time. And 99% go hyperglycaemia ( peaking 17mmol/L). I have got Creon 25000 for this and very early observation seems helpful. Ask your GP for blood glucose test strips+needles+meter. ask for 100 strips for a better spread of the test results. If they hapy to give you Libre freestyle patch and monitor then its a great tool as the single patch stays on arms for 14 days and records every 15 min plus whenever you touch he monitor to the patch it will records instant reading.

"Removal of the top of your stomach eliminates the "glands" that release ghrelin and therefore we don't have an appetite - I genuinely struggle with work/life/diet balance and frequently forget or am unable to eat frequently enough - this most definitely results in pain."

Sorry to know your hardship, however not everybody has same side effect and I am one of the exception. I do have both the appetite and hunger. Although the appetite is more subjective matter because it can be affected by the mood swings; whereas hunger is more objective matter.

"I continue to experience issues with bile production - can't quite crack what's causing it. "

Can you check how were you mentally and physically immediately before those bile episodes. Physical fatigue and mental stress might be root cause for the Pyloric Sphincter to not close properly. If you can record tangible observations in this elimination process of the cause then you will be able to understand what may be the root cause. Put bluntly the PS may have gone lax and might need surgical intervention. But if you have some recorded data, this will definitely help speed up the diagnosis for excess bile movement to your mouth.

I really do empathise with your personal situation as I have young family myself. Priorities in this age are more demanding in many aspects, but no excuse to not cherish the beauty of life.

[Alan_M]

It sounds like a set of fairly normal reactions after the surgery, and at a point when the surgery is long ago.

My reaction would be to seek an appointment with a gastroenterologist who is experienced at dealing with post oesophagectomy patients. The bile issue is something that might well be resolvable. But aspirating bile is not a good thing health-wise.

Apart from sleeping position, taking Gaviscon at night might help? (but you have probably done this already?).

[Aussiepete in reply to Alan_M]

Thanks Alan. I'm seeing my oncologist in two weeks time for a regular check up and my surgeon in about 3 months - I might see if I can get in to see him soon.

I don't take gaviscon nightly but I think it's a good idea and will start to see if makes a difference.

[Alan_M in reply to Aussiepete]

You might think about contacting the specialist nurse to arrange / discuss the gastroenterologist side of things as appointments do get booked up well in advance.

[kiddy]

I agree with you and your symptoms I am 2yrs 5mths post surgery. I take creon which has helped a lot with loose stools and dumping. I get dumping from too much fat or sugar. I cannot have yoguart, ice cream full fat milk. I have 1 bad day of loose stools approx once a week. I carry dextrose tablets for a low sugar spell where i feel light headed. Also a banana especially after exercise.

I get pain under my arm scar area if I eat too much this is due to nerve endings given mixed signals from the stomach i was told by my surgeon. In cold weather my scar back under arm aches normal again.

I also get bile and acid reflux. Last night went to sleep ok,had a bad attack at 3.30 am this morning i am waked out and coughing. I do take Gaviscon advance and sucralfate at night as well as Lansoprazole twice daily. I sleep with three pillows but sometimes slip down.

I sympathize with you my kids are 24 and 28 and live away from home so just me and hubby who is a rock.

Glad still to be here and live life with the adaptions.

Best Wishes

Debbie

[AoifeMcC]

I have type 1 diabetes as well as being an over 11 year survivor (I had my total esophagectomy) in 2007 having had chemo first - I also had my two children before being a 5 year survivor. I do get sympathy and help from my husband, I do know at this stage for the most part what does and does not work from a food perspective and thankfully rarely get the scar pains. I still have fatigue so am older than my years in some regards though my young children keep me busy - I also work. It gets easier with time,

[Aussiepete]

All,

I've had a significant number of private and public replies to this posting. Thank you so much !! Very useful advice and guidance....

Pete

[sportsman]

Hi, A latecomer to your post but I was struck by your comment that you sleep on 3 pillows. I am not surprised if you slip off (and effectively are lying flat). Whilst not perfect my approach has been to raise the top end of the bed by 4" (on wooden blocks) supplemented by a 4" wedge under the mattress necessitating only one heavy pillow (just occasionally I add a second thin pillow). Good luck.