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Swallowing


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#1 PAULINE

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Posted 18 December 2006 - 07:09 PM

Hi Everyone,

I 've been having some swallowing problems and would like to tell you all about my latest Barium Swallow. The statement wrote out from my Rhym to take to the gastronuraligist( don't mind my spelling am not to good at it.) It states,

1. LONG AREA OF NARROWING IN THE MID ESOPHAUS WITH DECREASED PRIMARY AND SECONDARY CONTRACTIONS AND DELAYED EMPTYING OF BARIUM BOTH IN THE UPRIGHT AND PRONE POSTIONS.

2. SLIDING HITATAL HERNIA WITH SCHATZKI B-RING AND MILD GASTROESOPHAGEAL REFLUX.

3. MOTILITY CHANGES IN THE ESOPHAGUS ARE CONSISTENT WITH SCLERODERMA INVOLEMENT IN THE ESOPHAGUS.

My doctor told me that maybe the gastro-doctor could help me. It always feel like my food won't go down or stay down even with drinking alot of water with my meals. I've had my esophagus streched twice then they decided to do the Barium Swallow. Do you think this problem can be fixed? or do you think in the long run that I will end up with a feeding tube?

I have only been dignosed for four months with dss, It seems to be attacking pretty quickly. My lungs only have 30% function and I continue to be short of breath even when I just make my bed. I sad and getting a little be more scared at each passing day. I just needed to vent and cry on your sholders for a minute or two. If anyone can tell me what all of this means with the swallow I would greatly apprecate it.

HUGGS,
Pauline

#2 Elehos

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Posted 19 December 2006 - 03:30 AM

Hi Pauline,

Lately I've been having more trouble with the swallowing, always feel like there are whole jelly beans trying to slide down my esophagus, and have to do muscle relaxation to keep from...well, you know how it can gag you. At the moment, I am trying to get into a rheumatologist, but around here, it can take 3 months before getting an appointment. Sorry, I don't have any real medical solutions yet, but have found that even though my symptoms are worsening lately, and quickly at that, each day is different, and getting scared is only going to worsen things. Sometimes people flippanty say, "Don't worry, tomorrow will be better," but oddly enough, sclero symptoms can change radically overnight, and I've had a couple of "good" days in a row!

Since I've had asthma most of my life the problems with the lungs are familiar to me, so maybe I have a bit of an advantage in not worrying, but it's a horrible battle when you can't breathe. Although there doesn't seem to be an actual cure for sclero at the moment, there are far more treatment options these days, and it seems that Americanmike and Gocartmoz (did I get that right?) are two in particular that are looking into some of the more radical treatments. I'll bet that you'll be getting some great links from others that can give you some peace of mind and great treatment options even if I can't right now (I'm a newbie at any treatment). Please try to stay calm in the midst of the storm, stick close to your doctors, and keep your eyes open for posts for new treatments--they come up frequently!

Hugs to you too!
Elehos

#3 janey

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Posted 19 December 2006 - 04:52 AM

Pauline,
Looks like a pretty precise report from the Barium swallow. I would think that a GI doctor could help with some of the problems you're having. I certainly would continue to search until I found one that could help you. I can't help from experience, but I can provide the ISN information page on Throat involvement. You should be able to find information related to your specific problems as well as treatments. Help this helps.

So what is your rheumatologist doing for the disease? Are you on any immunosuppressants or is he just treating the symptoms as they arise? I know I had swallowing problems and problems moving food into the stomach in the beginning but once I started on MTX, the swallowing problem went away. As fast as your disease seems to be progressing, you might want to talk to the rheumatologist about treating the disease as well as the symptoms. Is your rheumatologist a specialist? If not, please consider seeing on.

Please keep us informed as to how you are doing. Lots of hugs being sent your way.
Janey Willis
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#4 Heidi

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Posted 19 December 2006 - 06:36 AM

Hi Pauline,

Have you visited with your GI doctor or rheumatologist since you got the results of the barium swallow? I am sure one of them will have some suggestions for treatment. I know there are several medications out there to help with the motility issues. Please do keep us posted on what your doctors decide and how you are doing.

Warm wishes,
Heidi

#5 PAULINE

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Posted 19 December 2006 - 06:40 AM

Thanks to Elehos and Janey,

My rheumatologist is a specialist and right now he is just treating my symptoms, but wants to see me right after I get back from the GI doctor on the 10 of January. Right now the only thing I am taking is Celebrex, Protonix, and Pain meds for my rough days. Elehos, will you please let me know what the doctor tells you about your swallowing problem when you get to see him? Janey, I will check into the site you have given me. Thank you for that.


BIG HUGGS,

Pauline Huggins

#6 Elehos

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Posted 19 December 2006 - 07:39 AM

Hi Pauline,

I'll certainly let you know what the rheumatologist says, but it might take a few months. It's typical in upstate NY to have to wait 2 to 3 weeks to get a call returned just to make an appointment, then having to wait 2 to 3 months before getting in. In the meantime, I do have two wonderful doctors doing what they can during the wait for the rheumatologist. There are others with motility problems, and I'm sure they can fill you in on quite a bit!

Warm wishes and hugs,
Elehos

#7 Sweet

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Posted 19 December 2006 - 11:37 AM

Hi Pauline,

Looks like you've already received some good feedback and a link in regards to your problem. I just wanted to say that I'm sorry the disease seems to be progressing so quickly. I'm confident that your GI doctor and rheumatologist will have some good treatment plans for you.

Keep us posted.
Warm and gentle hugs,

Pamela
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International Scleroderma Network (ISN)

#8 PAULINE

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Posted 19 December 2006 - 01:38 PM

Thanks to all of you and I will let you know how things go after the 10 of Jan.

Elehos I to had to wait three months to see the rheumatologist to find out what was going on , it was a long wait just to wait some more but I know it will work out in the long run. Sweet, thanks for your input I really need it. Hedi Thanks for saying there is meds out there to fix's this swallowing ordeal.

BIGG HUGGS,

PAULINE

#9 emmie

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Posted 19 December 2006 - 06:48 PM

Hi Pauline,

I just wanted to say hi to you. I don't have any more information about your swallowing issues. But I sure know how it feels for these changes to be happening and to feel sad and scared. Finding a place like this to come to where others understand and can give you information makes a big difference, doesn't it? I'm glad you find us!

Oh, one idea...be sure you are taking "baby bites"! :-)


xoxo emmie

#10 PAULINE

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Posted 22 December 2006 - 12:52 PM

Thanks Emmie,

It is great to have somewhere to go to vent . I really like to hear anyone's suggestions on what to do or what not to do. Thanks to everyone on the board I truly apprecate you all.

HUGGS,

Pauline Huggins

#11 R'egene

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Posted 24 December 2006 - 03:52 PM

Pauline,

I've had dss for 8 years now. I't's not so bad when you eat small bites and chew your food very well. Take your time eating and even though water helps a little. Seems like after drinking all that water my food still tries to surface. It hasn't gotten worse and I try not to think to negative. Taking my prilosec everyday helps with the food getting stuck a little. It'll be ok you'll learn how to work around it. There are those bad days when im rushing trying to eat breakfast and get out the house, I end up coughing terribly and eventually throwing up my food. There are good days when I can eat a meal not to large and take my time. I'm sure things will get better.


R'egene

Happy Holidays :D

#12 PAULINE

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Posted 27 December 2006 - 06:07 AM

Dear R'egene,

I so appreciate all what you have told me and I thank you for that. How long have you had difficulty swallowing? Do you also have alot of problems with your lungs? My test showed I only have 30% lung function is this going to worsen ? and is this precentage bad? Sorry for all the questions R'egene but I'am just reaching for anymore information.



BIG HUGGS,

Pauline Huggins

#13 Margaret

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Posted 30 December 2006 - 04:16 PM

<<I know I had swallowing problems and problems moving food into the stomach in the beginning but once I started on MTX, the swallowing problem went away>>

Janey.....in reading this script from Pauline, you said meds helped with the swallowing. What is MTX? My son's rheumatologist. said the esophageal dismotility was probably permanent. Pauline....my son had his swallowing study done in Oct....that was the start of his road to Scleroderma. His esophagus deosn't work from the neck down.....he has to 'wash' everything down with milk/water.

Once again....thanks for the discriptions from everyone else (jelly beans!!!)....it helps me to understand what my son is going through.

Take care, Everyone.
Margaret

#14 Elehos

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Posted 31 December 2006 - 08:31 AM

Hi Pauline,

I'm still waiting to hear from the rheumatologist about an appt., but have found a particular muscle relaxer does help with some of the gagging, whether eating or not. For a couple of years I've had a "stuck jellybean" feeling in my throat that has worsened considerably, and some days it makes me feel so nauseous I can't eat. Getting rid of the muscle spasms takes a bit of edge off this, and I can send you a PM if you like. It might not be the right med for you, but you can ask your doctor if it might help. My heart goes out to you with this--it's not a good thing to have to live with!

Hugs to you too, and hope the New Year is good to you!

Elehos

#15 janey

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Posted 31 December 2006 - 09:17 AM

Margaret,
Sorry for the abbreviation. MTX is methotrexate. It's an immunosuppressant that is used to treat the whole disease by suppressing the immune system. It's not specific to the esophageal dismobility your son is having. Poor guy - I'm sorry the doctors don't feel that it can be corrected. Have they tried any meds at all? I did find this article on metoclopramide that may or may not help. I'm not familiar with the medication at all.

Metoclopramide response in patients with early diffuse systemic sclerosis. Effects on esophageal motility abnormalities.

Big Hugs to you both,
Janey Willis
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#16 Margaret

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Posted 31 December 2006 - 11:09 AM

<<Have they tried any meds at all?>>

Janey...no, they haven't discussed meds at all. He's been on Nexium and Zantac since he was 10 because of GERD. His ped rheumatologist doctor is waiting till Feb's blood tests come back before going into treatment options. He is just as confused as I am. He doesn't know of any kids with sS. His knowledge is based on "a few kids with skin issues." I think that is why he recommended the doctor in Pittburgh. Once again....thanks for all the info. This site is such a learning center!!!
Take care, Everyone.
Margaret

#17 PAULINE

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Posted 02 January 2007 - 01:12 PM

Dear Elechos,

yes, I would like you to send me the PM about the jellybean problem.
Thank you very much.

HUGGS,

Pauline Huggins

#18 PAULINE

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Posted 04 January 2007 - 03:59 PM

Dear Margaret,

I am so sorry to hear about your young son. So the doctor told you there is no hope in fixing the swallowing problem? I hope we can all find a medicine that will either stop the process of damage being done or repair the damage done.



BIGG HUGGS,

Pauline Huggins