Hello, @gastrogirl. I've been wondering about your situation and how you're doing during this wait to get to the Jax Mayo. This is so tough, I'm sure.....waiting for an important, possibly life changing visit is the worst. You seem to be doing well, tho. I wanted you to get to chat with @artist01 because she's been through so much gastro stuff and is very knowledgeable and supportive. She's a wonderful, positive resource for you now and as this journey continues. Remember her for those reasons.

I see you've gotten all kinds of responses the last week or so. Well, I think you can relax a bit now and do some thinking. It may be time for you to stop trying to self-diagnose and predict through fear and not quite enough information what will be happening the next week or so. It's time to take a step back, take some good, cleansing deep breaths, sit quietly alone and think. Amazing what will happen when we do that.....just think.

You have your hotel room scheduled. You know where you'll be and how to get to the clinic. You have a map, I'm sure they sent you one in your packet w/your schedule and other information. They're so well organized and helpful, you are full of good info now.

Has your portal been helpful? What kind of schedule do you have now? I suppose you have a first meeting with your gastro doctor to meet and give you a chance to exchange information. He has your records and will have spent some time going over them well so he knows much of what they offer even before you walk in. Hopefully, you have a journal you've begun as we first discussed filled with lots of early information to share and questions to ask. This is extremely important, as he needs to hear from you just what's going on, for how long, the progression of the issues and your expectations from him.

Do be frank and up front with everyone. These folks are there for you. They are your advocates and are there to help you find answers, a diagnosis, develop a treatment and care plan. You are partners in this. Remember that...no adversarial relationships here, only supportive and helpful, caring and working for you.

Trust is extremely important. They must trust you are honest and forthright with them. You must trust they are on your side and will help every way possible. That trust is a real tough issue for me. I've had so many years of not the best care, years with no or wrong answers and gobs of questions! So, trust is of utmost importance. That doesn't mean you accept everything they say as gospel. It's not. they're on this investigative journey with you, hand in hand. So, trust that they have your best at heart.....

I honestly doubt you'll be looking for fun things to do when you leave the appointments and go to the hotel. You'll be tired and want good rest and sleep. Eat well, not too much, but what you know is good for your situation and naturally, what they tell you based on the schedule of tests. I imagine you'll be having tests most of the days you're there. And there are some very interesting tests someone has dreamed up! No need to fear, we all survive them just fine and they give the docs good information, so just go with the flow.

I found every single person at this Mayo clinic to be helpful, kind, full of information if you ask, wanting to help you. Remember, fear is not your friend. Fear causes paralysis very often....in thoughts, in movement, in healing. Fear of being ignored I've heard from your messages.....no, you will be helped and advised. I imagine after you and your doctor complete your first meeting, he'll have an idea and share with you his plan of action. So just relax and be prepared to hit the ground running. they are excellent schedulers. You'll have your days filled with new docs, new nurses, new tests, and adventures.

As you begin to get some answers, and you may have some biopsies from tests that require a few days to get results....but, most of the test results and pictures from the tests and doctors' notes will be on your patient portal within a few hours. It remarkable. You will have answers written by the doctors on your portal that will indicate their findings and thinking as to what direction to go next.

Trust. Relax. Be thankful for this wonderful opportunity to have the best care available. So many can't get this care. We're so blessed to have Mayo close to us and have the ability to get this specialized medical help. You are special. You are blessed. You are on your way to finding answers, getting treatment and healing. Let your thought and your mind be in charge of this process beginning tonight. Begin healing tonight.

When you have time, ck online for the connection of the brain to pain and healing of the body.
Blessings, my friend. May your next days be filled with good things. Good people. Good thoughts. Healing.
elizabeth

@gastrogirl
I made a mistake.. looked back and it was 4 weeks I had to stay in area after hospital stay. It is about a 4 hour drive from our home to the Mayo (longer sometimes when we have the travel trailer)… a little far to go if I had an emergency.. of course I could have been airlifted by helicopter. I still had one chest tube in and had to wait until nothing was draining. I had so many tubes.. g-tube, j-tube, nasogastric, two chest tubes and another one in my chest I don't know what they called. I went to the campground with the gastric, chest and j-tubes. j-tube was removed after a week and chest tube a few days later. Tubes.. it doesn't really hurt when they are removed.. just feels weird.

We got to the campground on 21 Sep 2014 and left on 16 Nov 2014.. so 8 weeks at the campground.. but 3 of those weeks I was in the hospital. Hubby says it was about $500 a month for the campground stay… More now I'm sure… Free laundry use.. free ice and free cuppa coffee if you wanted. Hubby had to go back to campground every couple of days for a shower, have a good meal, do laundry, and replenish his snack supply.. other than that he was at the hospital with me. We only took 6 changes of clothes with us… hospital stay was suppose to be 4 days so had figured two weeks in area at most. Another extra expense was I only had two shirts big enough for me to wear. My chest was so swollen. I had bought an xl tee shirt in support of a concert the base had… almost bought the large. Good thing I didn't.. it is what I wore to and from hospital after surgery . K-mart had some men's pocket t-shirt reduced down. half price. I told hubby that is great! I had to safety pin my chest tube to shirt.. get big ones cause I cannot wear a bra yet. Hubby is my saint 😇. Uggh.. hopefully an extended stay will never happen again.

They may send you to a dietician to figure out how to avoid a feed tube. Just figuring out your problem may solve the losing weight. I did the calorie counter before I had the surgery. I only managed to eat the most 800 calories… but how do you minus what you threw up. 🧐 300 calories was about it without getting sick. Surgeon asked me to try hard to gain at least 5 lbs before surgery. Some how I managed 4 lbs. I don't remember what I ate that stayed down. Maybe just being less active helped with weight gain.

I rattle on again. I pray you find answers. Keep me updated.
ZeeGee