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Old 03-28-2017, 01:41 PM #3
Ragtop262 Ragtop262 is offline
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Join Date: Mar 2015
Location: Midwest
Posts: 381
10 yr Member
Ragtop262 Ragtop262 is offline
Member
 
Join Date: Mar 2015
Location: Midwest
Posts: 381
10 yr Member
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Thanks Mrs. D.
Some background on my son, I posted last April about him - but haven't updated in some time:

He had a c-diff infection 6 years ago, and after that he had episodes of severe nausea and cramping about every 12 weeks. After a complete GI workup, he was tentatively diagnosed with cyclic vomiting syndrome.

This pretty much continued until last April, when he had two ER visits for appendicitis like symptoms. The first time they just sent him home saying it was just one of his usual episodes. A few days later it recurred and he went to a different hospital. They did imaging and said his appendix was inflamed, but so was the surrounding intestine. They felt it wasn't appendicitis, but was "90% likely to be Crohn's Disease". They gave him antibiotics and prednisone and told him to follow up with a GI specialist.

Additional detailed testing by a GI doctor didn't show any signs of Crohn's disease, and he was in a "wait and see" mode.

Then in July he again had severe abdominal pain. This time, imaging showed what appeared to be an obstruction but without an obvious mechanical cause. He spend some time in the hospital with an NG tube in, and the doctors went back and forth on whether they should do exploratory surgery. Eventually, they re-examined all the imaging and felt they may have seen an inflammatory cause for the obstruction. They gave him prednisone again, and things almost immediately cleared up. At that point, they were again suspecting Crohn’s disease. However, follow up testing including a “camera pill” that took internal pictures of everything from his esophagus to his rectum again showed no signs of Crohn’s Disease, or any narrowing of the intestines.

Then in November he again had severe pain and went to ER. This time he did have appendicitis and unfortunately it ruptured. The surgeon that did the operation was very experienced. He was concerned that there could be inflammation beyond the appendix based on his history, and prepared us that it might be necessary to remove a portion of the intestine if that was the case. Fortunately, that was not the case. The surgeon did have to flush out the abdominal cavity due to the rupture, and treat him with antibiotics. He indicated that there was no visible sign whatsoever of any additional inflammation on the exterior of the intestines.

At that point, his GI doctor finally indicated that she felt it extremely unlikely that he has Crohn’s disease, but rather some “functional” disorder that has caused all the pain, nausea, etc. She put him on Amitiza to try to “keep things moving” through his system.

I initially felt a great deal of relief that it was “only” a functional disorder – until I did some research and realized how bad these functional disorders can get, and how difficult they are to treat. He is still having the same type of issues, although right now they are more frequent but less severe. I think the next stop is a motility specialist. However, since motility is very much a neurologic process, I want to make sure he is getting the right nutrition and supplements to support the neurologic function of his digestive system.

Sorry for the long post – please let me know if anyone else has any thoughts.
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