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Not IBS, but a Carcinoid TUMOR !!!!!!
      #290651 - 11/19/06 07:25 PM
unhappycramper2

Reged: 11/21/05
Posts: 8
Loc: Anaheim,Ca.

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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Re: Not IBS, but a Carcinoid TUMOR !!!!!! new
      #290666 - 11/20/06 06:42 AM
Life.Is.Random

Reged: 03/06/06
Posts: 310
Loc: NJ

Are you feeling any better and have you found a diet that helps you? I know this may seem like a stupid question, but did you lose weight from eating less food, or did you eat the same amount of food and still lose weight?
I hope that you feel and get better soon! Personally, I still haven't found the right solution yet.
P.S. I think you should also post this in the "Eating for IBS" message board, because I think other people should see this post.

--------------------
Tierney
IBS-C
www.StandardProcess.com[/url] = the home of REAL supplements


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Life is Random new
      #290673 - 11/20/06 08:11 AM
Jordy

Reged: 08/12/06
Posts: 2095


What have you tried and what are you currently trying? Have you found anything that brings some degree of relief? An SFS? Digestive enzymes? Tweaking out this diet?

I feel bad for all who continue to struggle. I hope you find something that helps soon.

--------------------
IBS-C with pain and bloat

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unhappycramper2 new
      #290676 - 11/20/06 08:26 AM
Sand

Reged: 12/13/04
Posts: 4490
Loc: West Orange, NJ (IBS-D)

I'm glad your doctors finally figured out what was wrong, but I'm sorry it turned out to be this. I hope the labs show they've gotten everything.

Thanks for letting us know about this. Good luck getting settled into an eating pattern your new "layout" can manage. I'll be thinking of you and hoping all goes well.

--------------------
[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]

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Re: Not IBS, but a Carcinoid TUMOR !!!!!! new
      #290695 - 11/20/06 08:58 AM
unhappycramper2

Reged: 11/21/05
Posts: 8
Loc: Anaheim,Ca.

Thanks,
A little of both on the losing weight from eating less food, and ate the same amount of food and still lost the weight? I might have slowed down a bit in eating mainly because of the pain that it caused in the lower pelvic area.
I can pretty much eat anything I want now POST OP(what a blessing!)and the pain is gone. I can only hope that they do not find anything other cancer left in there. Thanks for the reply!
I suffered

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Re: Life is Random new
      #290743 - 11/20/06 05:34 PM
Life.Is.Random

Reged: 03/06/06
Posts: 310
Loc: NJ

Currently, I'm on a low-carb diet (just no bread or bread products), which definitely helps with the bloating. I can also tolerate oils and other fats, but I can't have too many carbs in a day, or it tips my stomach over the edge.
I'm definitely better, but not totally "healed".
I've also been taking probiotics and increasing them every few weeks. I've had bad reactions to increasing them in the past. I've been taking different supplements, too.
Anyways, sorry for blabing my life story! I hope you feel OK (or great!) yourself!

--------------------
Tierney
IBS-C
www.StandardProcess.com[/url] = the home of REAL supplements


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Re: Life is Random new
      #290754 - 11/20/06 06:23 PM
Jordy

Reged: 08/12/06
Posts: 2095


Well, you're doing better than I thought!

What kind of probiotic are you taking? Is that the only supplement you take?

Are you using other things besides bread to be your SF buffer? Like white rice or potatoes or SF veggie?

You can never write to much in a response to me! I love hearing people's stories and experiences.



--------------------
IBS-C with pain and bloat

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Re: Life is Random new
      #290874 - 11/21/06 03:10 PM
Life.Is.Random

Reged: 03/06/06
Posts: 310
Loc: NJ

I'm taking this probiotic called "Lac-Enz" by Standard Process. Other supplements for now are: Betaine Hydrochloride, a digestive enzyme, this thing called Fen-Cho, and something for my pituitary gland. I'm also taking chopped up garlic and licorice root, which helps loads! (I know... it's a lot.)
For vegetables and fruits, I eat anything, except for bananas and olives, because I really don't like the taste of them.
Do you take any supplements yourself?

--------------------
Tierney
IBS-C
www.StandardProcess.com[/url] = the home of REAL supplements


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