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So relieved to find people with this frustrating disease process. I was beginning to think I make up all of my s/s. I had R colectomy removing a 5cm carcinoid in my illeocecal valve. Nothing in my lymph nodes, but now symptomatic with watery diarrhea, racing heart at times and flushing once more, along with generalized abdominal pain, probably associated with my Portal Vein Thrombosis I developed 4 weeks post o.p. after my Colectomy. I have since developed Varices steming from this clot and has reeked havoc on my body. So I get banded every 6 weeks to 6 months per EGD. Now they feel it's affecting my small and large intestines causing bleeds. I'm just here to be informed and what others are going through and maybe help one another feel understood. Thanks to you all and hang in there! It doesn't help that I'm a RN who tries to figure everything out because the doctors really don't have any answers. The Oncologist tells me it's so slow growing don't worry about it, GI tells me I dont know why you have diarrhea, and My liver Dr. (because of my blood clot, not that I have anything wrong with my liver) tells me go see GI and Oncologist and they have nothing for me.
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@pbrown I see that this is your first post, welcome to Mayo Connect.
While I'm sorry to hear that you are dealing with the frustration of a carcinoid in the ileocecal valve as well as the other symptoms. Anything to do with NETs/carcinoids is very frustrating, isn't it?
Probably the most important thing you can do for yourself is to seek out a specialist for NETs. Not every location has specialists in this rare type of cancer. Here is a link to the Carcinoid Foundation https://www.carcinoid.org/. If you go to their website you will see that they list experts in the field. Even if you have to travel to see one, it's a good idea and allows you some good information that can be taken back to your GI and/or oncologist.
Are you close to a Mayo Clinic facility (Minnesota, Florida and Arizona)? If you would like to seek a second opinion at Mayo Clinic, you can submit an appointment request here: http://mayocl.in/1mtmR63 Often, after the first consultation, Mayo experts can work with a local provider to continued care.
Also there is a Mayo Clinic Care Network. Read more about the network and facilities here: https://www.mayoclinic.org/about-mayo-clinic/care-network. These are other hospital systems that are part of the Network and can consult with Mayo doctors.
Being an RN gives you the tools you need - so stick with the process. Probably others in our group will talk with you about the flushing, diarrhea as sounding like symptoms of carcinoid syndrome. If you are comfortable sharing more, what types of blood work do you have on a regular basis?
I'd like to introduce you to some of our members who may be willing to share experiences with you, @tresjur, @tomewilson, @jenchaney727 and Mike, @meppard (I think that Mike is also an RN).
We look forward to getting to know you and supporting you with this rare disorder.
Will you keep in touch with us and let us know how you are doing?
Teresa