Damaged esophogus

I have a damaged esophagus from excessive vomiting. Currently taking carafate by crushing a pill and mixing with small amt of water, and nexium twice a day. I have been told I can have no solid food for 8 to 10 weeks. Is there ANYTHING I can do to help it heal? I am able to swallow approx a quarter teaspoon of water at a time and the pain is truly horrific. I keep thinking I must be having a heart attack, but, not. Any suggestions will be so much appreciated. Thank you.

Hi Willow,

OUCH!  Sorry to hear you're having such a hard time.  Having had an inflamed esophagus, I understand how difficult it is.  Are you on the Carafate tablet because you don't have good prescription coverage?  If you have good prescription insurance, the Carafate Suspension would be much better than the pill for you.  I've done the mixing the pill with water thing, and while it's much better than anything else, it's still not nearly as helpful as the suspension.

I can tell you that if you can tolerate milk and egg, a nice egg custard is pretty soothing and has lots of good nutrition. 

I'm afraid to say that your doctor is right in telling you that it will take a good long time to heal from the irritation.  It will take a lot of patience on your part.

about a year ago a new member here at the forum had a similar problem.  She had damaged her esophagus by drinking lemon juice.  Here is a link to her posts. 

https://www.healingwell.com/community/default.aspx?f=45&m=2063518

Hang in there.  It will get better, but it does take quite a while. 

I expect others will be by to say hi and offer suggestions.

Good luck!

Denise

Willow,

I totally understand your frustration over all of this.   My problems with esophagitis and gastritis occured before I had reflux surgery.  When I'd get gastritis, I'd immediately get esophatitis and would have a lot of pain, and not be able to eat more than a spoonful of egg custard (my mainstay) at a time.  I understand what you're going through.

I would expect that if you baby your esophagus the way you are, you won't be a whole 2 months the way you feel now.  You should gradually begin to feel improvement over time.  The tricky part is when you're nearly healed.  You'll have to avoid the temptation to jump ahead with the process, as you could set yourself back.  Patience is the only answer.

Believe me, I also couldn't believe there was no way of making things heal more quickly.  It's pretty amazing that esopageal tissue takes so very long to heal.

Be sure to stay in touch with your doctor.  If you cannot eat anything for an extended period of time, I'm sure your doc will want to know about it.

Do Maalox or Gavascon help at all?  I know they're not as long lasting as Carafate, but they should give you a little relief.

I wish I could give you better news. 

I'm with you in spirit!

Hang in there,

Denise

Hi Willow,

First, when your doctor (and I) said that it would take a couple months to get things healed I don't think he (and I know I) didn't mean you'd be in this kind of pain the entire time.

I do think your doctor has never experienced severe reflux or burning, or he's realize that it often refers into the back and chest.  It's perfectly normal.

Your situation is so severe and dire that I wonder if it would be worth the high Carafate suspension copay since it can do a much better job of coating your esophagus and helping it heal.  I don't know your financial situation, and you may not be able to swing it.  It's just a thought. 

Do you have a family doctor/internist that you see regularly?  Is this who is treating you?  Be sure you don't allow yourself to dehydrate because you can't take in enough liquids.  I know it's hard to swallow.  Be sure that a doctor is following your progress closely.

Did you read through the posts I sent you the link for?  That individual tried a lot of things that I've never had experience with.  You might find some helpful tips there. 

I'm sure the chest pain you're feeling is a reaction to the muscle contraction required for swallowing.  I do understand your pain.  I would get that type of problem periodically (not quite to the point you're at, but pretty bad), and was even hospitalized with it (because the reflux that caused the burn was causing asthma.). 

I'll tell you this sad tale:  The GI group who were treating me did a horrible job.  They did nothing at all to help my healing. They changed my medication and that's it.  They didn't even help intervene with the dietician/kitchen.  I was getting sent a regular diet--even spaghetti!  I had to do it all myself. 

The one thing I could tolerate (and maybe you could try this once you've done some healing) was egg custard.  I lived on it.  In the hospital I had egg custard and water on my tray, period, once I was able talk with the kitchen.

You can whine all you want.  It hurts, you can't eat, you want it to get better.  It's a natural thing to feel frustrated, angry, and sad. 

I'm glad you're posting here.  Please continue to write about your experience and your progress.  Perhaps someone else will be seeking the answers that you will discover as you go through this experience.

Very best wishes for a speedy recovery!

Denise

Denise, thanks again for the communication, it is appreciated. I picked up the carafate liquid yesterday and do not notice anything from taking it, I had samples before trying the pill crushing and noticed nothing then either...? I'd like to say on a positive note that yesterday I got down a quarter cup of kefir. It took quite a while, but I did get it down. Today, I am so weak, it's uncomfortable so I put a can of creamy chicken rice soup through the vita mix and got most of that down...woo hoo!!! The chest pain built but it didn't make me cry so progress is happening - yay! I'm thinking maybe tomorrow I may try and make the most liquid mashed potatoes ever and see how that goes. I'm very curious how you know when it's OK to try and eat a "normal" diet again, there is no indication from the doctor that they'll bother to scope me again and since you can obviously do tremendous damage without knowing it, how do figure out when the healing has occurred? Not really looking for you to answer this Denise, just wondering "out loud" what the future will bring with regards to this scenario...it has been suggested that it will be about six months before I can anticipate something so crazy as a slice of pizza.
As I read the post from gettysyork, I couldn't help but remind myself that no matter how bad you think you have it, somebody, somewhere has it so much worse. And to that person I would say, be up front with the GI doc prior to the EGD and do not stress over the EGD, it only takes moments to complete, will give pictures of your esophagus and why someone hasn't scoped you by now makes no sense. There is no lingering anything from the test, it's simply a way for them to get a camera down your throat and take some pictures to help them diagnose your concerns. It is painless and quick. Just make sure they are clear regarding your lung issues and you should be fine. If this is a new doc to you, google them and find out what others think of them. Good luck to you with this.

Hi gettysyork,

Sorry you're struggling.  I don't think you have to worry about your lungs in regards to sedation.  First of all, you're not going under general anesthesia...they use a drug that relaxes you and puts you out a little while the endoscopy is being done. 

I have asthma, and was having a lung infection and serious breathing problems when I had my Nissen fundoplication surgery.  At that time I was worried that I might have an asthma attack while under general anesthesia (a much more severe version of what you'll be having).  A friend of mine who was a nurse-anesthetist told me that they put medicine in the anesthesia tube that helps asthmatics and eliminates that worry.   I had the surgery and didn't have any problems as a result.

I've had an endoscopy 3 times.  The first time I was aware and awake, but under a very mild sedative.  I remember the procedure and actually helped swallow the endoscope, but was very relaxed.  The second time I chose to do the procedure without any sedation.  This works fine if you're motivated and have a good nurse to talk you through it.  The third time I asked to have very little sedation, but was put out, as I remember the doc coming in and talking to me and that's the last I remembered until the whole thing was done.

As long as you make your GI doc aware of your lung issues, he/she will be able to determine whether or not it is a problem that would contraindicate the sedation.  I really, really doubt that, but since I'm not a doctor, I'd suggest you call your GI Doc's office and/or the office of the doc who diagnosed you, to ask the question and set your mind at ease.

Don't worry about the endoscopy procedure.  It only lasts about 5 minutes, and most people are put out for it, so you don't even remember anything.  There is always the option of no sedation, but I don't recommend that for the first one.  You should at least have them give you enough to relax you.  You could request that be allowed to be awake but medicated if that would ease your mind.

It seems to me that if you contact the doctor who diagosed you with LAM, he/she will be able to tell you if there is a risk in doing the procedure.

Good luck!

Denise

 

Hi willow,

I did have a lovely Easter weekend, thank you.  It sounds to me as if you've made some progress, so I'm glad to hear that.  I know it's frustrating to have to wait patiently as your esophagus does the hard work of healing.  You're doing the only things you can do to help the healing along.  Now's not the time to try avoiding medication, no matter how much you'd like to.  Although the improvement is gradual, and hard to notice, it's happening.

Once you're fully healed you'll be enjoying dinner and wine--no matter how hard that is to believe at the moment.

I'm glad you'll be continuing to post and let us know how your recovery is going.  As I've said before, your experience will one day be a godsend to someone else experiencing a similar problem.

Best wishes for continued speedy healing!

Take care,

Denise

 

Post Edited (dencha) : 4/8/2012 6:51:35 PM (GMT-6)