New to the Board and having trouble with Crohn's

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Rougeman
New Member


Date Joined Sep 2007
Total Posts : 7
   Posted 9/15/2007 1:38 PM (GMT -7)   
Hi I came across this board while doing a web search and I'm glad I found it.  I have been living with Crohn's disease for 16 years andI have managed to keep it under control using Pentasa and Prednisone during flare ups.  In March of this year I started to experience problems with swallowing, it seems as if food get stuck in my throat and I am constantly chocking when I eat.  when I look at the back of my mouth there are white spots along both sides of my uvula and on my uvula there is a blister like "thing" there.  My throat is very red and sore and there seems to be elongated white areas that kind of swell when irritated with food.  I constantly have a tightness in my throat and when I do swallow I ge a sore feeling all the way down into my stomach.  When I wake in the morning before eating everthing is okay, but as soon as I eat all the symtoms that I have listed start.  I have been to the doctor a number of times and have been on antibiotics, with no success, and have been told everthing from it being a virus to being in my head.  when I do ask if it could be crohn's they seem to think that I'm crazy and get the response that crohn's only affects the bowels.  I am living in a northern area with no GI specialist close to the area.  Do the symptoms I have with my throat sound as if it could be crohn's appearing in my esophagus and mouth?  I would greatly appreactiate any feedback.  Thank you

gemini kiwi
Veteran Member


Date Joined Nov 2006
Total Posts : 1136
   Posted 9/15/2007 2:23 PM (GMT -7)   
Hi Rougeman,
Welcome to HW, and I'm sorry you are in such pain right now. You can indeed get Crohn's anywhere from your mouth to your anus. It a Fact, and the fact the your Dr has not bothered to consider this is reason enough to perhaps change Dr's. It is quite possible you have stricturing, inlamation and ulcers. We have several members who are suffering similar symptoms at the present time, I'm sure they will be along shortly to welcome you , and no doubt give you some pointers on what to do next.
Tess.

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 9/15/2007 2:26 PM (GMT -7)   
Hi and Welcome to HW so glad you found us there is another person on here who is having some mouth issues and hopefully she will see your post. Yes CD can effect from mouth to anus .Not much help but I am sure someone will come along to help you. lol gail

Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 9/15/2007 8:07 PM (GMT -7)   
Welcome to HealingWell!
Sounds like you are getting your CD in your throat, bad luck in that. I'm sorry your docs don't understand that our illness effects our whole bodies & can also be present any where in the digestive track.

Sincerely,
Matthew

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 9/15/2007 8:36 PM (GMT -7)   
Stupid docs, don't they know what "ENTIRE GI TRACT" means???

I hope you are soon able to find a doc that knows what all crohns "entails"...pun intended, LOL!

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


Marie-Claire
Veteran Member


Date Joined Mar 2007
Total Posts : 900
   Posted 9/16/2007 12:17 AM (GMT -7)   
Hi Rougeman,

You can indeed have crohns disease in you ENTIRE GI TRACT which, in case this doctor doesn't know includes your mouth, esophagus, stomach all the way down to the old wazoo.!
I have CD in my esophagus which flares from time to time. It is very painful to the point of not being to swallow my own saliva. I know that there is another member of Healing Well that also has CD in her mouth.
I think it is high time you looked for another DR. Don't ever think this is all in your head. In fact It's in your throat!You know your body better than anyone....and if this doesn't feel right then it probably isn't. Trust your gut! Our instincts are usually right on!

Meantime, welcome to Healing Well. I do hope you are feeling better soon. Come to us often. It's a great place to ask questions, complain, report good or bad news, or share embarrassing moments. This "family" understands each other which for me is a such a blessing.

Love and prayers
Mary
50 yr.old retired RN,Crohn's D for last35 yrs..severe esophagitis, migraines,strictures,urethral stricture,depression,probable MS.
 
 


curley
Veteran Member


Date Joined Mar 2005
Total Posts : 4305
   Posted 9/16/2007 7:53 AM (GMT -7)   
I understand were you are coming from.I to have problems with getting chocked as well.My GI had suppected that I have CD's in my Esophagus and stomch and he was right.This is why I has such a hard time swolling my food.This is why I have such a hard time keeping my meds down as well.My GI did an Endocopy (sp)and he did a MRI with contrast as well.I hope that you get some relief soon and just be blount with your GI and if he still doesn't believe you then may be you need to seek out a new GI that will help you.
Curley
.........
 


Rougeman
New Member


Date Joined Sep 2007
Total Posts : 7
   Posted 9/16/2007 7:59 AM (GMT -7)   
I just want to thank everyone for their responses, its good to be able to hear from people who really understand what this disease is all about, my wife is very understanding and supportive, but she really doesn't know what it is like to have CD. I have an appointment in two weeks, if I am not satisfied with the results I am going to ask to be sent out to see a specialist, I am getting really tired of having to try and convince the doctors that this could possibly be CD.

Mary could you please tell me what treatment you have to use to calm down the flare ups, like you I sometimes have trouble swallowing my own saliva and at these times I am afraid to take my meds as they are sticky and feel as if they are going nowhere. Just one last question, do the symtoms that I have described in my initial post sound like CD in my mouth and esophagus.

Thanks again for your support and understanding.

Chad

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 9/16/2007 10:40 AM (GMT -7)   
As far as I know they use steroids to treat inflammation from CD in parts of the GI tract like the stomach and esophagus.

Good luck and keep us posted.


:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


kimberlayn
Regular Member


Date Joined Jul 2007
Total Posts : 239
   Posted 9/16/2007 3:19 PM (GMT -7)   
Being on antibiotics, especially heavy duty ones, gives me the same bump in the throat, whitish coating and sometime spots in the back of the throat. Thrush, or a yeast infection, is what the problem is for me. Antibiotics can kill off the good bacteria that keep yeast in check. Staying away from sugar, which yeast thrives on, during the course of antibiotics helps me. Doctors can also prescribe medications for it. Good luck!
diagnosed 11/06, solving the mystery of years of on/off abdominal pain. No more "it's just a virus". 33f with 2 boys, a lovable dog, and a wonderful husband. 150 mg Imuran, Vicodin for pain, trying 9 mg Entocort again


Marie-Claire
Veteran Member


Date Joined Mar 2007
Total Posts : 900
   Posted 9/22/2007 12:22 AM (GMT -7)   
Rougeman,
when I get a flare in my esophagus I'm hospitalized usually for dehydration...so put on IVs , given pain meds through the IV and pred. It usually takes a good two weeks in hospital before I can swallow normally again.
Otherwise I am usually well maintained on Sulfasalazine , a soft diet, lots of fluids. etc. If I start feeling a flare coming on I switch to boost or ensure immediately for about a week to give everything a rest. that doesn't always work.
Another symptom I often have are numerous sores in my mouth. they are extremely painful and also make swallowing difficutl. I've never had them checked as they usually go away after a few days of boost and ensure.
Good luck to you....love and prayers also,
Mary
50 yr.old retired RN,Crohn's D for last35 yrs..severe esophagitis, migraines,strictures,urethral stricture,depression,probable MS.
 
 


dragonfly137927
Veteran Member


Date Joined Sep 2006
Total Posts : 2527
   Posted 9/22/2007 2:14 AM (GMT -7)   
Prior to having any symptoms from my CD (before DX) I use to get cancker sores in my mouth a lot. Once DX and on meds for CD I will only get one on occassion
Dx with Crohn's 1987, symptoms as early as 1984.
Temp iliostomy February 2007, reversed June 2007, Ovarian cysts, migraines, allergies (incl food allergies) , oral allergy syndrome (diff than true food allergies), Asthma, Gall Bladder removed 1999, Inguenal hernia 1987
 
 
 


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 9/22/2007 12:18 PM (GMT -7)   
I am so sore right now in my throat and I was put on antibiotics and TOLD to drink WATER contiually as I am dehydrated .......MY doc is being married this weekend so I had to deal with a differnt doc and was not impressed ........

There is a paste you can get for the sores in your mouth ......I will go and find it but prolly by then someone will have posted it lol
I am also feverish and have only been able to eat soup ..................not good as I am bordering on 100 plds again .................am not exactly sure what the heck is going on I even soiled my pajamas 2 night ago and have had nothing but constant and continual D since ......this doc said I had Bronchhitis which could be with the way throat is and gland on right side is swollen right up
My oxycontin is not even touching the pain

Normally I do cut up my food in small pieces and chew it till there's no tomorrow and have no problems
There is relaxation techs for your throat as well
I know someone posted about these awhile back ............

I do hope you will stay here with us
It is the best for support and people that TRULY do /can relate to your DD

Take care
Feel better soon.................LYN
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