IBS to Carcinoid Tumor to a Right Colectomy !

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Regular Member

Date Joined Nov 2005
Total Posts : 113
   Posted 11/19/2006 8:18 PM (GMT -7)   
I used to be a member of this website   yeah    maybe a year and a half ago,and posted many posts about thinking I had IBS,with the cramping,and gurdling,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"   nono    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!   cool

Veteran Member

Date Joined Apr 2005
Total Posts : 3269
   Posted 11/20/2006 10:14 AM (GMT -7)   
Wow, that is quite a story. I remember way back when, when you frequented this forum looking for answers. I am so sorry you've had to endure so much. Thank you for sharing your story and showing us how important it is to follow our gut feelings. I wish you the best of luck for a healthy and speedy recovery.
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Veteran Member

Date Joined Mar 2005
Total Posts : 2486
   Posted 11/20/2006 11:12 AM (GMT -7)   
Cramper, I'm really glad you had that CT done.  Carcinoid tumors are pretty rare indeed, but they can cause a lot of problems (crazy diarrhea, flushing, etc.) but they do tend to have a specific set of symptoms, often mimicking other gastrointestinal disorders.  I remember when my GI did the 5-HIAA test for me, thinking it might be a carcinoid tumor.  It was negative, thank goodness, but your story proves that it's very important to do a full work-up when there is a significant amount of weight loss.  I'm glad to hear they figured out the mystery, and I wish you the very best!

Veteran Member

Date Joined Jun 2005
Total Posts : 2976
   Posted 11/20/2006 12:18 PM (GMT -7)   
I hope you get better. Sometimes just *knowing* why you're sick is something of a relief, even if it is cancer. At least you know you're not going crazy. Hopefully now that most of it's out, the rest will go away on its own.
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