Guest guest Posted April 1, 2012 Report Share Posted April 1, 2012 Hi All, I emailed last month about 's stomach issues. We are still awaiting an official diagnosis, but it is either Chron's disease or Lymphoproliferative disease (LPD). He has been through the gamut of tests and here is what was found: Colonoscopy- inflammation in the terminal ileum (small intestine) CT Scan- (Nose) chronic sinusitis in all sinuses (could be contributing to the vomiting- has now done a 2 week course of antibiotics. (abdomen) mesenteric adenopathy (inflamed lymph nodes) and small intestine wall thickness. So now, they are going to do a pill cam this week and next week most likely surgery to biopsy the lymph nodes and small intestine. The GI and Immune docs are very concerned. Even mentioned needing to make sure there are no malignancies in the lymph nodes. Small chance, but freaked me out. So, just wondering if any of you have dealt with this? It seems to me that Chron's would be the better option at this point. He said that even if there was no malignancies that the LPD would put him at a very high risk going forward. Would love your thoughts. Thanks! Mom to (8) & Jordan (4) Both CVID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2012 Report Share Posted April 1, 2012 Possibly a PET scan. Helps to identify crohn's hot spots or any type of other problem. Or a ct enterography. Macey's had both and i've had the ct enterography. Ursula On Apr 1, 2012, at 1:15 PM, " " <taw1492@...> wrote: > Hi All, > > I emailed last month about 's stomach issues. We are still awaiting an official diagnosis, but it is either Chron's disease or Lymphoproliferative disease (LPD). He has been through the gamut of tests and here is what was found: > > Colonoscopy- inflammation in the terminal ileum (small intestine) > CT Scan- (Nose) chronic sinusitis in all sinuses (could be contributing to the vomiting- has now done a 2 week course of antibiotics. > (abdomen) mesenteric adenopathy (inflamed lymph nodes) and small intestine wall thickness. > > So now, they are going to do a pill cam this week and next week most likely surgery to biopsy the lymph nodes and small intestine. The GI and Immune docs are very concerned. Even mentioned needing to make sure there are no malignancies in the lymph nodes. Small chance, but freaked me out. > > So, just wondering if any of you have dealt with this? It seems to me that Chron's would be the better option at this point. He said that even if there was no malignancies that the LPD would put him at a very high risk going forward. Would love your thoughts. > > Thanks! > > Mom to (8) & Jordan (4) Both CVID > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2012 Report Share Posted April 1, 2012 Possibly a PET scan. Helps to identify crohn's hot spots or any type of other problem. Or a ct enterography. Macey's had both and i've had the ct enterography. Ursula On Apr 1, 2012, at 1:15 PM, " " <taw1492@...> wrote: > Hi All, > > I emailed last month about 's stomach issues. We are still awaiting an official diagnosis, but it is either Chron's disease or Lymphoproliferative disease (LPD). He has been through the gamut of tests and here is what was found: > > Colonoscopy- inflammation in the terminal ileum (small intestine) > CT Scan- (Nose) chronic sinusitis in all sinuses (could be contributing to the vomiting- has now done a 2 week course of antibiotics. > (abdomen) mesenteric adenopathy (inflamed lymph nodes) and small intestine wall thickness. > > So now, they are going to do a pill cam this week and next week most likely surgery to biopsy the lymph nodes and small intestine. The GI and Immune docs are very concerned. Even mentioned needing to make sure there are no malignancies in the lymph nodes. Small chance, but freaked me out. > > So, just wondering if any of you have dealt with this? It seems to me that Chron's would be the better option at this point. He said that even if there was no malignancies that the LPD would put him at a very high risk going forward. Would love your thoughts. > > Thanks! > > Mom to (8) & Jordan (4) Both CVID > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2012 Report Share Posted April 2, 2012 Thanks Ursula. I will suggest this to our doc. > > > Hi All, > > > > I emailed last month about 's stomach issues. We are still awaiting an official diagnosis, but it is either Chron's disease or Lymphoproliferative disease (LPD). He has been through the gamut of tests and here is what was found: > > > > Colonoscopy- inflammation in the terminal ileum (small intestine) > > CT Scan- (Nose) chronic sinusitis in all sinuses (could be contributing to the vomiting- has now done a 2 week course of antibiotics. > > (abdomen) mesenteric adenopathy (inflamed lymph nodes) and small intestine wall thickness. > > > > So now, they are going to do a pill cam this week and next week most likely surgery to biopsy the lymph nodes and small intestine. The GI and Immune docs are very concerned. Even mentioned needing to make sure there are no malignancies in the lymph nodes. Small chance, but freaked me out. > > > > So, just wondering if any of you have dealt with this? It seems to me that Chron's would be the better option at this point. He said that even if there was no malignancies that the LPD would put him at a very high risk going forward. Would love your thoughts. > > > > Thanks! > > > > Mom to (8) & Jordan (4) Both CVID > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2012 Report Share Posted April 2, 2012 Thanks Ursula. I will suggest this to our doc. > > > Hi All, > > > > I emailed last month about 's stomach issues. We are still awaiting an official diagnosis, but it is either Chron's disease or Lymphoproliferative disease (LPD). He has been through the gamut of tests and here is what was found: > > > > Colonoscopy- inflammation in the terminal ileum (small intestine) > > CT Scan- (Nose) chronic sinusitis in all sinuses (could be contributing to the vomiting- has now done a 2 week course of antibiotics. > > (abdomen) mesenteric adenopathy (inflamed lymph nodes) and small intestine wall thickness. > > > > So now, they are going to do a pill cam this week and next week most likely surgery to biopsy the lymph nodes and small intestine. The GI and Immune docs are very concerned. Even mentioned needing to make sure there are no malignancies in the lymph nodes. Small chance, but freaked me out. > > > > So, just wondering if any of you have dealt with this? It seems to me that Chron's would be the better option at this point. He said that even if there was no malignancies that the LPD would put him at a very high risk going forward. Would love your thoughts. > > > > Thanks! > > > > Mom to (8) & Jordan (4) Both CVID > > > > > > > Quote Link to comment Share on other sites More sharing options...
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