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Long stricture


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#1 warmheart

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Posted 06 June 2010 - 05:00 PM

Hi everybody,

I've gotten a mild esophageal stricture that the gastroenterologist tells me runs most of the length of my esophagus. Basically it involves all of the smooth muscle (the part affected by scleroderma) and none of the striated muscle, which is why she thinks that the narrowing is caused more by progression of the scleroderma itself than by untreated reflux. I have to force food down and force it to stay down out of my throat, but my esophagus was already paralyzed so it's not much of a difference for me. Nothing gets stuck permanently, so I consider myself lucky there!

Has anyone else had this happen? And if you have, what has happened in the long run? Thanks for your input!

Hugs,

warmheart :)

#2 Shelley Ensz

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Posted 07 June 2010 - 04:26 AM

Hi Warmheart,

I'm sorry you have an esophageal stricture and am sending you some flowers to make you feel better. :flowers:

I haven't had strictures, myself (although my husband has, but not due to scleroderma). What are they doing for treatment?
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 warmheart

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Posted 08 June 2010 - 05:01 AM

Hi Shelley,

Thanks for the flowers! It's not a big deal, though--I'm so used to swallowing problems, they've just gotten to be normal for me. The stricture really hasn't made much difference, other than now I wake up in the morning with food stuck in the bottom of my throat that needs to be pushed back down. Something new, but as I said it's not a big deal.

The gastroenterologist (first time I've seen her) recommended omeprazole 20 mg. a day, and then also to be re-scoped in 3 years for the Barrett's. But my primary care doctor put me on 40 mg. of omeprazole twice a day and got the insurance to agree to pay for it. I never asked her to do that and I was grateful to her, because 40 mg. a day hadn't been enough in the past, and so I knew I needed the high dose.

Nobody mentioned dilatation, maybe because there would be such a long length to dilate? I was glad, because I'd had some past experience with dilatation and I knew I didn't want that.

I'm sorry Gene has a stricture! I hope it doesn't bother him too much.

Hugs,

warmheart :thank-you:

#4 Shelley Ensz

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Posted 15 June 2010 - 02:51 AM

Hi warmheart,

Oh the English language! I phrased that wrong. My husband had ulcerated esophageal strictures many years ago. He had severe heartburn and had to have frequent esophageal dilations. He got so accustomed to them, that he would have them without any anesthetic so that he could just take an hour off work for it.

After that, he had to have a Nissen fundoplication (esophageal surgery) in order to qualify to be listed for a lung transplant (over six years ago). The Nissen cured his heartburn completely and he has not had a stricture since.

He then had a single lung transplant in January this year. He doesn't have scleroderma, he has A1A (alpha-1 antitrypsin deficiency) which is an inherited condition that causes severe emphysema or liver failure at a young age, from lack of a protein that repairs the organs. He still doesn't have a whit of heartburn.

I do wonder if you shouldn't ask about the dilations. The throat isn't all that long, and I believe when they stretch it, they do the whole length. But I have no medical training, and I might be wrong about that.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#5 warmheart

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Posted 18 June 2010 - 03:35 AM

Hi Shelley,

Boy, Gene really has been through the wringer! I'm glad his Nissen fundoplication did the job for him.

I did thought of asking about a dilatation, but I don't really want one anyway if I can avoid it. Ten years ago, after I was first diagnosed and no stricture was found, one of the gastroenterologists (he specialized in the esophagus) decided to try a dilatation anyway just in case. It was done in the endoscopy unit, but the way it was done was that I sat un-medicated in an ordinary chair in an exam room, and he took the largest bougie out of the tray (it looked a lot like a giant turkey baster) and quickly rammed it once down my throat and back up (I almost wrote "up and down"--that would have been quite a procedure!).

Afterward something went wrong and I started having chest pain; I managed to talk the recovery room nurse into letting me leave and then had too much pride to turn around 5 minutes later and go back. It hurt a lot to take a breath for about a week afterward. The friends I lived with are upset to this day that I wasn't admitted, they were so scared the first couple of days that I'd die at home. The doctor was very sweet and condescending when I called, and I thanked him and never went back to him.

And it never helped my swallowing at all, presumably because there was no stricture in the first place.

I've been told lately that these days it's done with endoscopy under sedation. Sounds much safer to me, but still I think I'll pass if I can! Thanks for your input, though, Shelley!

Hugs,

warmheart :thank-you: