Irritable Bowel Syndrome Message Boards | Not IBS, but a Carcinoid TUMOR !!!!!!

Hiya,
I used to be a member of this website maybe a year and a half ago,and posted many posts about thinking I had IBS,with the cramping,and gurgling,which It turns out,was not true!

I kept my unhappycramper username because I thought I had IBS for two years before I had a CT scan to reveal the Neuro-Endocrine Carcinoid Tumor in my distal Illeum. The doc said this slow growing tumor may have been growing for the past five years!!! Very rare and very hard to diagnose..just like IBS!...or Crohn's, or Celiac Disease)

Back last October of 2005, a Colonoscopy that did not show anything suspicious because this tumor was apparently about five (5)inches from where she could reach with her scope! My primary Doctor was worried that I was losing too much weight,and this could NOT be the result of IBS any longer... (from 250 LBS,to 170 LBS,at my lowest weight) So she was smart enough to order the initial CT.
Then two Follow-up CT guided Biopsies taking out a total of twenty Core Samples. The first Biopsy (we thought) was Lymphoma, HOW? and WHY? did they tell me this? So the pathologist ordered another Biopsy that showed a few enlarged Lymph nodes around the appendix.

Next I had an Octreoscan with a radioactive Isatope injection (Tumor specific) with a Nuclear Scan which maps out where the tumor is and attracts itself to it,so it lights up so the Doctor can see it on Imaging,and to tell if it metastasized to the Liver or other organs. It was Localized and did not metastasized, so a right Colectomy was my next option. ( Bowel resection) I had the operation on this past October 23rd, and feel much better. BUT they took out about one foot of large Bowel and about 13 inches of Small intestines,so my bathroom habits are leaning more to runny stools with sediment than forming harder stools. Absorption had changed,so now I have to find the right diet to help me. The Octreotide/Sandostatin is an option,but Chemo is not a viable one with carcinoid patients, and The Oncologist wants to monitor the labs before any such treatment begins.

The next course of action is to repeat another CT scan or PET scan, I will soon get another complete blood panel to check levels of proteins like Chromogranin, and a 24 hr. urine collection to see evidence of Hydroxyindoleacetic acid (5HIAA), which was out of range on the pre-op blood work. ( 10.9 H )
All these tests to compare from Pre-Op labs to Post-Op.

So before the Operation I was suffering from a partial Bowel obstruction which everything i ate or drank would get all bunched up in my lower Quadrant pelvic area and was very painful,I would rub it around,then hear the loud gurgling noises,then a little relief,but not much.

Out of twenty-three Lymph nodes,three were cancerous,but localized, and one was plastered against the wall, where he had to stop scraping it off,without performing a "Whipple" operation, so someone was looking out for me that day. He figured the treatment could help shrink what's left.

So All this time I thought I had IBS, I was visiting a few IBS Forums thinking that all this cramping was something else, Lactose Intolerance,or Gluten sensitivity, so if you have any doubts that you may not have IBS with weight loss, then please get into a CT Scan STAT! Good Luck and be healthy!

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