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Replies to "@bonitav, rambling on Connect is completely allowed. :) Should you wish to meet other members managing..."
That doesn't sound like it was very fun @bonitav! You were rightfully discouraged. But look at that update! I'm delighted that the Mayo nurse followed up as promised and that you have appointments lined up. Might I suggest that you prepare a list of questions beforehand, especially with respect to whether you need another MRI. You might also keep a log of symptoms that you have over the next weeks until your appointment.
@hopeful33250 @irvkay312 do you have any thoughts on how to best prepare for the next appointment? Bonitav, what questions would you like answers to from your GI team?
Sorry there was no Reply tab at the last response from you @colleenyoung so responded here. 🙂 Including @hopeful33250 @irvkay312 .
Thanks for the suggestions. I will take note of the symptoms for the next few weeks. Will also keep a food diary.
Questions for my GI: Re pancreatic cyst: when is it appropriate for a follow-up MRI (without contrast)? Will that reveal any cyst change in size, etc? Will ask if he can give me more information about the type of cyst assuming I can get more clinical findings from the original doctor.
Re anastomosis inflammation and stenosis: Are there treatments that are safe for the inflammation? Is surgery required for the stenosis? Any idea why the previous biopsy in May didn't indicate Crohns, for which I've been treated for years? Is there anyway to confirm that I actually have Crohns? I'm sure I'll have more questions within the coming weeks before the appt, but thanks for the suggestions. My best to all!
@bonitav: I can only speak to the pancreatic cyst problem. I have spoken to several doctors regarding this because of my history of neuroendocrine tumors in the duodenum bulb. Their advice was to have a repeat MRI in either 1 or 2 years. After the first MRI, I had an ultrasound endoscopy and everything looked benign. My DX with regards to the pancreatic situation is intraductal papillary mucinous neoplasm (IPMN). I found that John Hopkins has a great website to explain the various pancreatic cysts, so if you are looking for reading material that may be a good place to start. I hope that your other digestive problems get resolved and that you can have some peace of mind.   I know that you will be in good hands at Mayo. I wish that I lived closer to Minnesota so that I could visit Mayo for a second opinion on a lot of different matters. Best wishes as you follow up.  Teresa <br><br>
Thanks @hopeful33250. Teresa, do you live relatively close to Florida? There's a Mayo here.
If I recall correctly, the pancreatic cyst I have is a mucinous neoplasm detailed via the ultrasound endoscopy, but will have to look for the report before I go to the Mayo. My medication list is in their system already so that's a relief. I've been treated for Crohns for years, yet now these symptoms in the anastomosis area were not classified as Crohns.. just inflammation, stenosis and stricture. At any rate, I'm feeling blessed to be able to get a second opinion and to know that if surgery is necessary, there won't be any hesitation about it. I just want to be able to eat without worrying whether I'll be in the ER at any time. I know everyone has their issues and I think about you too! Thanks again for your concerns, ideas. Bonnie.
Thanks, Bonnie. I'm glad that can be of some help. I live in southeast Michigan, but I am close to Univ. of Mich. Health System and I've found some very good docs there. I consulted with a doctor there about the pancreatic cysts and he said that they are being found more now because more people are having scans for other matters and the pancreatic cysts are being found incidental when looking at other problems. He wasn't too excited about it so I'm going to cool my excitement as well. Best wishes, Teresa
Thanks Teresa. That is good to know. Actually I had an abdominal ultrasound for a totally different reason when the cyst was discovered. I probably reacted quickly because my oldest brother passed away from pancreatic cancer. Glad you have good docs there! Thanks again and best to you.
Thanks @colleenyoung. Not sure at this point. Was in the Mayo ER in the wee hours of Sun morning.. A partial abdominal obstruction. After IV with pain meds, was admitted and a naso-gastric tube inserted (not fun), and removed after 24 hours. Then clear liquid diet, then soft foods and was dismissed. Lots going on as I try to get the recommended GI appt. My GI wasn't impressed with a partial obstruction... what to do after the biopsies from the colonoscopy showed only inflammation, no crohns ?, and stricture. Talked with her nurse today who was of no help. Says she'll call again tomorrow. Didn't think my Gi had more plans for testing.... Disburbing. **Update: call from the Mayo nurse that I now have appts with Gi specialist and Gi surgical team during first week in July! Wonderful! I can make it till then! Thanks for the support,