Follow up of my stomach issues

[Jaha]

I finally got my gastroenterologist to do a colonoscopy on me, a week ago Thursday. They could not get me sedated enough because of my BP dropping to low. I was awake the whole time during the endo and colonoscopy, it was awful. It appears that I have a kinked and looped bowel and he had a hard time getting it up thru to the end. He wanted to quit but I said that he had to keep going because I needed it done. He took 3polyps from the stomach and 2 from my colon, I still have multiple polyps left.
I rec'd the path report today and am a little in shock. It reads that I have a neuroendocrine tumor and need further investigation. I don't really want to tell my husband this right now or anytime really. That's why I came here to vent. I know there is no right time to tell him, I just don't want to do it over the holidays, when we are going to go out on our boat and have fun.
I just needed to tell someone, thanks for being here.:confused1:

[annekat]

Sorry to hear all this, Jana. My situation was not really comparable, but last year I had an endoscopy and partial colonoscopy... he had to stop because I kept coughing when he got to a certain spot and was afraid he would puncture something. The endoscopy showed esophageal ulcers. A few weeks later he had me do the Cologuard method, where they look at a large stool sample and analyze the DNA in there to detect possibly cancerous conditions. All was tested out to be OK, but I'll probably need a real colonoscopy in the future. Just wanted to make people aware of this non-invasive method; of course, if it had showed something, more investigation would have been needed. I hope to heaven your tumor is benign, and that they will be able to anesthetize you better in the future. I'm glad you vented here and hope you have a good 4th with your husband!

Sent from my MotoE2(4G-LTE) using Tapatalk

[Pete]

Well, the "good news" is you now have an explanation for your issues. I hope it's easily treatable without too much discomfort. Enjoy the holiday!!

[mishb]

Unfortunately not everything is WG, even though we tend to blame it for everything first.

I'm so sorry that they found this, and I'm keeping my fingers crossed that it is benign as Anne has said.

Thank goodness you were brave enough to tell them to continue.

Enjoy your holidays and then let hubby know what is going on. I hate the thought of you going through this without his support

Big hugs to you :hug2:

[MikeG-2012]

Big HUGE E-HUG from me Jana!!!

Hang in there!!!

[Alysia]

Dear Jana, I am so sorry that you have to deal with this tumor. I hope its benign. I googled it and read that there can be many variations of it. I pray that yours is the easiest. Thanks for sharing with us. Enjoy your vacation. Sending prayers & hugs ❤❤❤❤

[gilders]

Jaha, I'm so sorry to hear about your tumour. I pray it's benign.
I think you'll struggle to look like you're having a good time on holiday when you know you'll need to tell your husband at some point. He's not going to enjoy seeing you not enjoying your holiday as much as usual. So I'd tell him immediately.

Whatever you decide, you've always got lots of friends here to share your worries and troubles with. You always try and support others on this forum, now it's your turn to receive some support.

[Jaha]

I just wanted to thank all of you for your kind responses. I have set up an an appointment with an oncologist at James Cancer Clinic, at Ohio State University. I have been waiting for over a week for my gastroenterologist to call me back to ask him some questions and also for my Rheumy to call me to let me know about holding off on my Rtx that was scheduled for tomorrow. I have cancelled the Rtx, so I won't get down before I have the appt. on Aug 4th. I have had all my records sent to them and feel confident with the decision I have made not having CC take care of this situation. I have been trying to get the gastro at CC to do a colonoscopy on me ever since they found 20-50 polyps in my stomach, two years ago. I am kind of feeling ignored. This kind of cancer is very rare and slow moving, I feel that all will be good, once they find out where it originated from. I'm so thankful that I have a group like you all to talk with, and I love you all! I will keep you informed on my next steps!

[Pete]

I think you'll be in good hands at The James. Hoping all goes well. Glad to see this afternoon's tornadoes missed you.

[Jaha]

Me too! Close call!

[gilders]

Thanks for the update, glad to hear it's slow moving.

[Alysia]

Thanks for the update Jana. We keep on praying.

[MikeG-2012]

Sounds like it is good that it is slow growing and that they at least found it so it can be treated. (sounds like wegs doesn't it?)

Hang in there Jana!!! Thoughts and prayers coming your way!!

[renidrag]

Just catching up with this Jana, sorry to hear of this. I'm sure everything will work out. Will be thinking of you.
Dale

[Jaha]

Well today is the day I have my appt with the oncologist. I am so glad that this appt is finally here. I will keep you all updated on my status.

[Jaha]

I'm doing pretty good. We went to Columbus yesterday and I'm a little tired. This visit went well, I liked the doctor and he ordered a bunch of tests on me. I had labs done while we were there. I have to have a Pet Scan and Ct Scan next week. I will go back to James on Sept 1st to see the Doc and a Genetics counselor. So I think they are getting to the bottom of things.

[Pete]

I'm glad you have confidence in your doc at OSU. I hope treatments are tolerable and successful.

[Jaha]

Well all the tests are completed and I will be getting some answers tomorrow 9/1. It seems strange that on 9/2/2010, I started my treatments for Wegener's. I guess it is just a random date thing, but to close to a notable date. I have already read some of my labs and one of the CT Scans(Chest). I had some elevated markers on the labs, I hope some of my medications are causing this. The Chest CT had very little excitement, few scattered calcified granulomas,thin-walled cysts and scarring in both lungs. A small intrafissural lymph node and stable elongated opacity at left lung base due to scarring. I guess we will find out what the others say and explain the ones that they already released to me. I let you all know what they found and what they will do with me.
I am really badly overdue for my RTX infusion and am feeling it. I hope they give me the go ahead on the RTX, so I can at least get those symptoms quieted down. Please take care all! Talk with you soon.

[Pete]

Hope the news is good!!

[drz]

Hope you get go ahead for RTX

[Jaha]

I wanted to give you all an update on my stomach issues. The scans did not find any large masses, great news. They are now sending me to one of their Gastroenterologist, to repeat the colonoscopy and do an endoscopy with an ultrasound. The Oncologist is concerned that my markers are too high and that maybe something is being hidden in the stomach lining under all those polyps.
The chest CT scan shows that I have a few scattered calcified granulomas and thin-walled cysts in both lungs. There is also a interfissural lymph node in left lung.
The abdominal Ct scan shows a Duodenal diverticulum measuring 3.5 cm and sigmoid and rectum are collapsed, which limits evaluation of mucosal lesions.
The Pet scan has not been posted yet. It looks and sounds like I may need further investigation, for maybe some other issues.
I will probably have to go ahead and schedule the RTX infusion and have more appts. coming up for the stomach and colon.
I think I covered it all for now, hope all is well and please take care of yourselves. Thanks to all of you for caring!

[Pete]

Results so far seem to be benignly ambiguous. Hope it's nothing serious...