Trouble eating

I have a terrible time with eating. I get ulcers the size of silver dollars in my esophagus. It is the most excruciating pain I know. I have to be kept off of all food and liquids, even water, for fear my esophagus will rupture. I am kept fairly heavily sedated, thank God. They say that these ulcers I get in the esophagus are rare even in Behcet's. Of course I have to be in the hospital through out the ordeal because if the esophagus were to rupture I would need emergency surgery. My rhuemy says there are only six documented cases in the USA of esophageal ulcers of my kind associated with this illness but there is bound to be more. I have had this illness since I was six and finally fiund out last spring when I had meiningoencephylitis along with esophageal ulcers and I am 57. What I need to do to gain weight is drink, drink ensure plus or boost. They are good. They are best cold. Sometimes I will put it in the freezer and pull it out right before it freezes. It is kind of like a milkshake then. There have been times where I have required an feeding tube. They are a pain but they do help. I can even insert my own. It just seems more dignifying that way. Try drinking ensure. There was a time where I was drinking 12 fans of ensure plus a day at 350 calories a can. I did that for four weeks to put back on weight. If course I required doctor and nutritionist supervision because putting weight on too quickly can be unhealthy and risky. So if you are much below talk to your doctor about a nutritionist. There are healthy and unhealthy ways to gaining weight just like in losing weight. Hope this helps. Good luck. Happy New Year.

Hi there,

Yes ,I too have this trouble on an intermittent basis. It will be present for , let's say a few months then stops out of nowhere. I've had those ulcers in my stomach before. Gutwrenching pain and reaching for the nexium,etc.

This having to eat tiny meals, nausea, immediate fullness, failure to digest and your food can sit there until the next day-very uncomfortable feeling......I've self-diagnosed it to be gastroparesis- where your food stays put rather than move through the gastric system.

Like yourself, if i eat a morsel too much-severe gut pain, hard as a rock, severe nausea, followed by projectile vomitting (that is a mild word), extreme puking followed by relief!

I take domperidone pills prior to eating,it does help a bit for the motility of the stomach-but not a cure.

I wish I was losing weight,but that damn steroid weight clings on like grimm death!!😣

Better luck to you-take care

Keep eating small meals and stay upright for at least 20-30 min after eating.

Gen

You need to have a CT scan done on your abdomen, specifically on the spleen and maybe liver.

Also when is the last time you had a metabolic panel /CBC done?

Do you have have any active infections right now?

What you are describing sounds very much like Pancreatitis, and needs to be checked out ASAP. I know of a few Behcet's patients who have had chronic pancreatitis, and I believe that certain medications can contribute or increase the risk for it. Good luck!

Thank you all for responding 😊 I don't feel so "odd" or alone anymore... I do have acute pancreatitis from time to time. I follow a very specific diet. I have had an ultra sound, CT, pill endoscopy, and endoscopy. Conclusion is my BD has moved into my stomach with lesions. I have been on ranitidine, omprizole, imuran and kineret for years. I have tried most theripies for my BD. My docs are trying to hold off "kicking it up" on my meds for the fact I am so young and the long term negative effects.

Thank you 💚