Deep bone-like pain in back, hip and thigh after esophagectomy; has anyone else experienced similar?

[chris_usa]

I am almost three years out from Transhiatal esophagectomy for end-stage achalasia. The more active I become, the more I am having a deep pain in my back, hip, and upper thigh. The pain is almost completely on the left side, and made worse by periods of standing, walking, or bending over. The pain is in the lower back and wraps around to the J-tube incision, then down into the leg bone.

I did have a significant infection of the J-tube site, which was finally resolved when the stitches holding the tube in place were removed. The J-tube site was also cauterized with silver nitrate. The J-tube was in for a total of 8 weeks. This was the only complication, with the rest the the recovery normal.

I did have clinically significant malnutrition at the time of surgery due to the difficulties with nutrition from the achalasia. I was also on long-term (10yr) high-dose (Prevacid 30mg twice daily) PPi therapy. I am awaiting the reults of a DEXA scan. All X-rays of the area have been normal. The pain does not improve with anti-inflammatories, which I can only take episodically due to GI effects. I an wondering if possible nerve involvement.

Has anyone else experiened a similar sequence of events? Also, is there a point where you turn the corner with energy level and stamina? Or is low weight (25lbs off good weight) and super low endurance the new normal?

[Hidden]

I do not really know the answer, Chris, but it sounds as if this is developing quite a long time after the surgery so it does not sound as if it is because of nerves affected because of the surgery itself. It might be nerve involvement through extra exercise of long neglected muscles though? I wonder whether a physiotherapist might help?

I think that most people do not recover the same level of stamina as they had before, but gradually increasing therapeutic exercise is a good thing, but it is not something that you can take charge of - your body will refuse to go at a faster pace than what it is comfortable with, extremely frustrating though that is. It is a much slower pace than we would ever have imagined.

Some people have lost 6 stone (84 lbs) after surgery, and jog along happily at that new normal weight; others slowly put weight back on. If you are not actually losing weight it is a wardrobe rather than a health issue.

Absorption of nutrition will be very important for you, and it might be worth getting your mineral / vitamin levels checked if you have not already done this.

There is a point where you regain happiness with your newly changed body, and start to feel happier about it, but it is probably mental as well as a physical thing.

[christinehulmes]

I too had the transhiatal oesophagectomy back in October 2004 and continue to have pain in certain areas of my body like you only on the right side. I can do most things but after a short spell of time the pain in my back just under the right shoulder blade and my right hip and thigh kick in as if to tell me that i have done too much. It only takes doing a bit of ironing or hoovering or a little weeding in the garden for the pain to kick off and i have to stop and lie down and take anti-inflamitories (only if the pain is too bad). I find that i can no longer manage the level of activity that i had before the operation and have to listen to what my body tells me and stop what i am doing.

Because i lost so much weight i still have the jejunostomy feeding tube which i use every night for nutrition and yes my weight is ever so slowly gaining.

The pain remains an issue though and i find that i have to take painkillers at night before bed to help me.

[chris_usa]

Thank you very much Christine for your heartfelt answer. Have you received any info from your doctor as to a possible cause of this pain? I find that mine spikes after a meal, as if the dumping is also causing some irritation in the bowels. I would have to say that the best I have felt after the surgery was when I was getting great nutrition thru the J-tube. Now my nutrition is good and my vitamin levels and serum proteins are all good, but it's like I'm missing something. Hard to say.

I understand your situation, and hope that you will continue to improve slowly. Looks like we are in a similar boat, where recovery is framed in months and years instead of days and weeks.

I was a little put off by Alan's comments, as I don't consider a current status of 6' tall 128lbs a "wardrobe issue". Like most achalasia patients, I have been quite thin all my life, and didn't have an ounce of weight extra even before the major trouble getting significant nutrition down. I am already at peace with my status, but that doesn't mean that I would like to find a cause for these problems to improve my quality of life. To make such broad statements as he did without knowing any back story is a little troubling to me.

[Hidden in reply to chris_usa]

I do apologise, Chris. I am happy to delete my comment about weight if you wish me to?

[chris_usa in reply to Hidden]

That's OK. We all sometimes use our own frame of reference to evaluate external issues that are best judged on their own merits.

I do think it is important to remember that even though a certain surgery such as esophagectomy has similarities between all patients, there are also significant differences. Not only length of esophagus removed or access points, but also modifications of the surgery due to the underlying cause and other problems relating to the underlying disease.

No hard feelings.

[Demon]

Hi Chris

I was suffering with bone pain; it turned out I was very low in vitamin D, which causes poor calcium uptake. I took the vitamin D for six months and things cleared up but the pain returned again a few weeks ago after several months without taking them. I asked my doctor for more and once again things are improving. I was on 20,000 mg one a week for 3 months followed by one every two weeks. I will be sticking to one every two weeks as it seems to be working well for me.

I hope your situation gets better,

Steve

[chris_usa in reply to Demon]

Thanks Steve for the reply. I just leanred over the telephone late last week that the DEXA scan did show osteoporosis. I will (hopefully) learn much more when I talk to the doc face-to-face in two weeks. They have checked Vit D level with a blood test, and it came back normal. Did they check yours in any way other that a blood test?

With 10yr of high dose PPI, clinical malnutrition due to end-stage achalasia, and then the major stress of the Op, I have wondered if there was Calcium / Mag / Vit D problem. All of the tests post-op have shown normal Vit D and magnesium, with only one test showing a somewhat elevated serum calcium. I hope that with these DEXA results my internist will dig a little deeper into the bone issue.

[Demon]

Chris

A blood test should be enough; this op does take it out on your body for sure, however your osteoporosis may be related or you just may be prone to it. The sooner they know the full picture the sooner they can offer some medication to help which I hope is soon because it sounds like you have gone through enough already.

Steve

[chris_usa in reply to Demon]

Thanks. Even though I am not surprised at the results of the DEXA, I still wasn't thrilled to hear about osteoporosis. However it may be good news in that it could lead to finding the cause, and then a treatment, for these pain issues.