Ivor Lewis

[Ian1964oz]

I have had achalasia at 16years of age where they pinned back the muscles of the oesophagus giving free flow when eating as the food was getting stuck. This I lived with till 2008 when I was diagnosed with a condition requiring the IVOR LEWIS (Oesophagectomy) removal of the oesophagus and stomach lift and re-joining.

Since this I have had problems with eating as it causes pain like a Bloating, Cramping type pain followed by very loose bowel movements.

I have now been diagnosed with CML (Leukaemia) Just lucky I guess !!.

Follow up symptoms I am getting are:-

- Cramps, Pain after eating which take all my energy out of me.

- Inability to exercise at any great length.

- Constant tiredness.

In hindsight I do not know if the constant struggle with this pain and side effects was worth it.

of course I am happy that I am still living but would like some quality of life.

I do not know if anyone else is experiencing anything like this but would lke to hear from anyone who is struggling.

I am 50 and had the operation when I was mid 40's.

Regards

Ian.

[hilr]

Hi Ian, you do not seem to have had much luck, what a blow to get CML on top of oesophageal issues.

I am 2 years post-op from oesophagectomy for OC. Whilst I am back ar work full time and carrying on with life and very grateful for thAt, I still constantly get eAting issues, such as bloating, pain and extreme tiredness after eating and often a rush for the loo.

The only way I can manage this is to graze and eat little and often, which works most of the time, but eating out is a nightmare and no pleasure, as that's when I tend to over-eat and suffer all of the above.

Ice lollies after meals at home work great, seem to ease the symptoms. The lesson I still need to learn is that eating meals is not a battle to see how much I can eat, rather to get away with as little as required!!!

Davina Mcalls power balls are my favourite snack, along with baby ore-packed cheese portions.

Even at two years out it is all still changing and improving. The first 18 months I had a lumpy feeling in my throat when eating, that has passed now.

Tiredness is a real issue, although when I do a walk or gym workout I feel so much better, it's just getting started that's the problem.

Good luck and keep battling on,

Love and catches, hilary

[chris_usa]

I also had esophagectomy for end-stage achalasia at age 39, however I had the transhiatal approach as opposed to Ivor-Lewis. My understanding was that because of the complete aperistalsis the entire esophagus needed removal. I did not have an enlarged esophagus, but rather normal sized with complete aperistalsis and common-cavity effect mid-esophagus. A lot of my problem was due to the way in which the myotomy was performed (age 29) while I was active duty Army.

The esophagectomy was performed five years ago. My energy level and weight are still quite low. I cut my grass yesterday, and that is a big effort which will require several days of rest. I eat five-six times a day, but cannot eat anything after 1900 because of severe nighttime regurgitation and aspiration. I have many restrictions with eating, to include limitations on fats and sugars due to dumping syndrome. I have developed nerve damage and bone pain after the surgery, neither of which were present before the procedure.

Going to a dietician helped me with dietary ideas. I am on disability retirement from my job as a sworn law enforcement officer. My day revolves around eating, resting, and getting ready to eat again. I have an extremely supportive family and close friends who help with my struggles even though they can't really understand a lot of things that I am going through.

I try to appreciate all the blessings that I do have, and am at Peace with my situation even though some days are darker than others. I try to set a positive example for others, and try to be patient with those who take so much for granted. I avoid any thoughts of self-pity, for that is a path that leads to misery for everyone involved.

You are not alone. When times are darkest, even a small flicker of a flame can light up the whole room. Start looking for a match. \wc

[Ian1964oz in reply to chris_usa]

Chris Thanks, I am glad that there are many of us out there.

[Terri1962USA]

I am struggling as well. In fact I have asked for hospice care just 4 days ago and my doctors said yes. I am a Christian woman and giving up does not reconcile with my faith or my personality. I am 53. I had a Heller myotomy at age 11. Esophagectomy for end stage Achalasia at age 44 using transhiatal approach with complete aperistalsis and enlarged esophagus at 90%.

I was diagnosed with Leukemia type Burkett 's Lymphoma 2 years ago which they now believe I have had since age 8.

And now I am in liver failure due to the pain meds they have given me during my 8 years post esophagectomy.

I am on disability retirement as a Certified Public Accountant.

My doctors cannot fix the leukemia or the liver failure.

I am open to medical advice on how to waive the protocol requirements to receive a bone marrow transplant and reverse liver failure before it is too late.

[Ian1964oz in reply to Terri1962USA]

Gee Terri, you got dealt a bad hand also. I hope you get some good news soon.

[Hidden]

It is indeed possible that the leukaemia treatment / medication might be causing you digestion problems, but it is also possible that you might have something called small intestine bacterial overgrowth (SIBO) and/or dumping syndrome giving you insulin spikes. There is some material about dumping syndrome here: opa.org.uk/pages/factsheets...

Try avoiding any food with sugar / sweeteners in it for a while, and go on to a diet as if you were diabetic, and see if that makes a difference. Transfer on to a different milk / dairy diet ie lactose-free whilst you are at it. And keep a food diary.

I would suggest you get your mineral / nutrition levels checked, as lack of iron / B12 can build up and cause a shortfall problem.

I would also suggest that you see a gastroenterologist with experience at dealing with the after-effects of this surgery. Digestion problems as long term after-effects from surgery can be quite common. Antibiotics may help.

The link below is to an article is about cancer treatment, but most people who have an oesophagectomy have the surgery because of cancer and you probably have to place yourself in this category for a solution:

medscape.com/viewarticle/77...

I think it would be quite difficult to separate out after-effects of the surgery from the leukaemia effects, but if you compile a timeline of the various things you have suffered and when, a good gastroenterologist may well be able to help you out, notwithstanding that they will also may have difficulty in excluding leukaemia effects.

I completely sympathise with your wondering whether it was all worthwhile. It is quite natural to feel this way. But you do not have this level of surgery without a commitment from doctors to get you as well as they possibly can, which includes chronic digestion and quality of life issues afterwards as well. So I think you have to try and get as well as you can for the forthcoming health struggles that you have, without letting the leukaemia divert attention away from issues that may (or may not) be relevant.