questions for esophageal CD sufferers

I have a strange form of CD... not so much with the D, more with abscesses and pain.  I have already had a bowel resection at 17 when they found about 10 active abscesses and many more scars from ones that had healed by themselves.

Anyway, When my CD was flaring I had trouble with swallowing, reflux, not being able to drink anything carbonated.  about 5 years after my surgery I had an abscess in the back of my throat which broke and made me super sick (second one breaking in my lifetime).  The doctor took out my tonsils as some kind of "preventive" measure or something.  He also said he didn't think the abscess was realted to my CD...yeah right.  Since then I have had strange bouts on and off of what I call throat spasms.  I suddenly feel like my throat is collapsing and can't breathe for a short duration of time.  I have been to the ER regularly every couple years for what they Dxed as gallbladder sludge initially, then possible partial obstruction.  These were marked by intense central abdominal pain right under my sternum sometimes slightly off to the right.  Had gallbladder tested, everything normal.  Currently, I'm pregnant, having this same pain nightly along with indigestion, reflux, and this spasm.  I have NOT had blood or tissue that has come up from my esophagus.  I have been losing weight like crazy, have a hard time eating a full meal and have been extremely out of breath for about 4 months.  I also have never been able to tolerate acidic foods.  I have poo-poohed a lot of these symptoms being pregnant and all, but I was looking into other causes for the pain I was having besides gallbladder/pancreatitis and came across the E-CD.  I also saw that it can affect your heart and lungs.  The only other active CD I know I have is at the site of resection.  I have about a 4 inch long narrowing right before the site. 

My current GI is a joke and doesn't even remember who I am when I come in.  I will definitely find a new doc after the baby's born to look into all of this, but I was wondering if anyone out there had an opinion if this sounds like it could be CD of the esophagus.  It seems to explain a lot to me. 

Thanks for all your help!

Laura

Hi crashbabe.

The only stricture I've had diagnosed in the 10 years I've known about my IBD was an esophageal stricture. It was awful, but a balloon dilation took care of it and regular use of PPIs have prevented a recurrence.

The "throat collapsing" feeling you describe sounds like something else - a hyperactive airway, otherwise known as asthma. Asthma comes in many flavors - some people wheeze, some people cough, some people have bronchial spasms due to the slightest insult, like aspirating a drop of saliva or food. I'm a cougher and a spasmer. My asthma is generally due to seasonal allergies (I cough every spring & fall until I start using my meds), will get worse with any upper respiratory infection (also must use meds at the first sniffle), and if I aspirate during a meal (one drop of salad dressing, a bit of seltzer gone down "wrong") I will stop breathing and have to spend a good 30 seconds doing intense relaxation/meditation to get my bronchial tube to reopen. My kids find it alarming, but I'm sure they've seen it happen enough times now to know I'll be alright.

People with one autoimmune disease are more likely to have others, including asthma. Pregnancy can make any autoimmune disease worse. Pregnancy is also a notorious exacerbator of gastric reflux, which can make asthma worse all on its own. I'm sorry you don't like your GI - hopefully you have a good maternal health care provider with whom you can speak about these [fairly typical] pregnancy issues.