Upcoming Mayo Visit

[greypup]

Next Mon we have our appointment w/Mayo. Last week Dr. Tung was in receipt of diagnosis file, surgery file, two fecal cal tests, slides from upper and lower scopes in Aug and the most recent clinic notes from an office visit.

Does it sound like I have everything I need?

What should I expect?

Is it likely that they will scope M while there?

I am a bit anxious to visit w/brand new doctors, possible tests and how to process a second opinion.

The motivation for us to go is that M is beginning meds for crohn's and cystic acne. Hindsight shows us there is some kind of connection between the two. At diagnosis when she was NPO and on IV zosyn her skin cleared up beautifully. Now she has some cystic breakouts and an elevated fecal cal test (up from a 35 in July to 200 now).

The derm and GI in St Louis have ideas on how to treat them both (either Humira OR Imuran and Accutane). We are hoping to get a second opinion from Mayo on the best treatment for both.

She does not have issues with urgency or multiple poops. The whole way thru she has had regular poops once a day, until recently when the flagyl was increased and she then became constipated. Now she is on lower flagyl dose and maintenance Miralax once daily.

 

[my little penguin]

Good luck on the visit.

 

[Farmwife]

Ok, so you have the actual slides? Not just the biopsy results/path reports?

Yes they could scope if they wanted. They wanted to do it for Grace but not enough time.
However, she also had questions as to her dx(s), so scoping was the only way to answer it.

Did you get a hotel?

I just talk to the hotel we stay at and she said winter is in full swing.

 

[Sascot]

No help here, just wanted to wish you all the best!

 

[greypup]

st louis was supposed to send the actual.slides so mayo pathology could read them.

i'm making hotel reservations today at kahler. i've heard it's convenient.

 

[Brian'sMom]

Yes it is so convenient. You can go back to your room in between appts and labs. And you don't have to go outside. We didn't wear coats while there! (Except when we went to St. Mary's for our scope and mri) We took shuttle bus then. My son enjoyed all the underground walk ways and the skyways too. Lots of shops to see too. (Some distraction) Even a mall... and a library. My son didn't shop...just explored the tunnels!!

Sounds like you have everything you need. A friend in our town saw Dr Tung a few years ago and loved her. Have a safe trip

 

[Farmwife]

Yes I remember seeing the entrance in the subway for that hotel.
We also loved exploring the stores. Lots of good foods there.

 

[greypup]

Oh good. Glad to hear there are shops and restaurants to take our mind off of the visit and tests.

 

[Farmwife]

Just wait until you see the "subway". They make it feel like your not even underground. It's like an inside mall. Try to go when it's not lunch hour if your want to explore.

I never did the sky walks but heard their amazing too.

Hugs

 

[kimmidwife]

Can't wait to hear everything when you get back! good luck!

 

[Rocking on]

hello g:

I live four hours from the mayo but treat there for all scopes, hospitalizations and 6 month check ups.

The mayo is an amazing place. It's not only a hospital but an amazing museum. If you like art you can spend a weekend there just looking at their collection.

I love the mayo for their interpretations of scans. They catch things that my local hospital/doctors would never see. Although they are vey thorough, you do feel a bit like cattle there. I also feel the mayo will overturn every rock, and i do think they will recommend surgery whenever possible, so you have to use some independent judgement when they want to start cutting. Keep in mind they are a teaching hospital, and sometimes i wonder how much they recommend stuff for the sake of giving some new med grad some experience.

I also want to warn you of this... The last two times i woke up from a colonoscopy there i had a badly scratched cornea. The first time i figured perhaps i did it myself coming out of sedation but the second time i was pissed. I have no memory of how it happened either time. The mayo always puts we way under for colonoscopies and I do appreciate that, but i have felt a little roughed up coming out of many scopes and procedures.

I dont recommend the Kahler. Yes it's convenient, but last time i stayed there it was really worn down. Kinda gave me the jeebies. Now we stay at one of the Country Inn and Suites in Rochester. The hotels are much newer and cleaner. They also have free shuttle service to the mayo but after 16 years we know the route to the mayo pretty well, and they have great parking ramps also attached to the mayo. It's not as convenient but it's much cheaper and nicer. Tell them you are a mayo patient and they give a better rate as well.

If you ever need to be hospitalized at the Mayo, i doubt you will find a better nursing staff.

In short, i have found the mayo to be impeccable for initial diagnosis and perhaps the best place in the world to be for hospitalizations. But the fact is there is no cure for Crohns, and even the best doctors in the world cant change that at the moment. When things go bad I head there, but to get thru the more mundane stuff I try to utilize my local doctors. The mayo is exhausting. You do feel like a number for most stuff. Maybe you won't notice it the first time, but after a while it becomes very evident. The volume of patients that places processes every day is astounding.

 

[Brian'sMom]

The Kahler inn has undergone remodeling. When were you there last? It seemed ok to us. But there are also many options that still connect to the clinic

 

[Rocking on]

About three years ago, when we vowed we wouldn't go back. If they remodeled since then it was greatly needed, and good to hear.

 

[greypup]

We are at the end of our Mayo visit.

All the good things we've heard have been true. The doctors have been great. The process is streamlined and the surroundings so convenient. In 48 hours my daughter had a consultation, MRI and colonoscopy. She is exhausted but very glad to have it finished.

The biggest disappointment is not being able to get a follow up appointment w/the GI to discuss the results (pathology isn't in but MRI and pictures from the scope are). So we are going home w/out face to face wrap up.

I know that I will hear from the doctor as soon as she can call me with results but I still have so many questions.

All in all I'm glad to have second opinions but had wanted a bit more than we've gotten so far...

 

[Farmwife]

Same thing here. The GI called 3 times and she wrote a couple times. She was awesome.
Write down EVRYTHING! The GI did not rush me and told me any additional question please feel free to call or write.

Who did you see?

 

[greypup]

We saw Dr Jeanne Tung. We both really liked her. She took a lot of time at the consultation but there was still so much more that I wanted to cover.

Does your doctor respond pretty well by phone. Is she/he accessible?

 

[Farmwife]

Yes, I leave a message with her personal nurse and he gives it and will call if they'll be any delay.

One idea I had was to send they list of questions, so she had time to review them by the time she called me. Do you have the on-line account? You can write the doctor with your questions.

 

[greypup]

I'm signing up for the online account right now. I guess that's as good as it gets...

 

[kimmidwife]

Glad to hear the visit overall went well. Sorry you did not have a chance for that final wrap up.hopefully they will call you with everything. I am glad they were thorough. Did they make any sort of plan with you! Are they going to keep in touch with your regular doctor? Is your regular doctor willing to work with them?

 

[greypup]

They definitely said they will call and that they will send their notes to our doctor. And our doctor was all for us getting a second opinion. So, yes, they will collaborate.

I think I need to be at peace with having the Mayo testing, diagnosis and treatment recommendations. That's what I need to be taking away.

It's so hard for me to accept this diagnosis. The way it happened. I had myself fooled that we had shut the door to auto immune diseases because she was gluten free since age 8. I still don't get it.

 

[Brian'sMom]

When we left on a friday. The GI we saw called me tues morning with biopsy results. He said they usually are back by the last appt but pathology ran some extra stuff to confirm some stuff

 

[Rocking on]

The mayo should send you a detailed account of your visit in the mail. They are excellent at that. But if you need to know the results of tests, you may have to call them about it.

 

[CD mom]

I have nothing but good things to say about Rochester Mayo. My son was diagnosed at 7 and is now 22. He was originally treated at STL children's hospital. He had a small intestine resection at 13, has been in a clinical trial without success, lost efficacy to Remicade and is now struggling with the worst flare ever. He started at Mayo when he was 15. They saved him from having another resection, which STL and KC GI docs recommended. He stopped treatment at Mayo when he had a remission. He was a teen and didnot want to go "all the way back up to Mayo". He found a KC doc...Not impressed....very difficult to communicate with and really didn't seem to grasp the enormity of his situation: almost completely disabled, unable to work or attend school. Just kept telling him "that's Crohn's...keep on your meds. See you in 6 months". He got worse, but still was told to continue with the protocol.
Now he is living out in Santa Monica and tried a couple GI docs but failed to find a GI doc that was helpful. He got worse. Unable to walk at times due to swollen joints, unable to eat. Pooping over 30x/day. Bedridden. I finally convinced him to see Dr. Faubion again. He agreed.
So...back to Mayo to Dr. Faubion. This doctor communicates with him anytime via email. His visit last month went really well. He had a full work up including an enterography. Now his Humira is increased to once a week and is on a slow weaning of entocort. He also had c-diff, which was successfully treated. For once he feels he has the support and communication with a doctor that will help him. If the Humira fails to help him, then all he has to do is shoot the Dr. an email, and they will discuss the next step. He has huge ulcerations and granulomas in the large intestines which is the first time this has ever been an issue. He also has extreme arthritis...to the point that he has to pay someone to help him with his daily activities. Unable to work or go to school. BUT...he feels like he has hope. Hope that there is someone that will listen now that he is now being treated (again) by one of the best doctors he has ever had. At Mayo there are various clinical trials and a wealth of cutting edge experience and knowledge about the current meds available and the ones coming down the pipeline.
He flew from LA to Rochester without a hitch. Stayed right across the street. His trip lasted 4 days. Dr. Faubion is board certified in Peds GI and Adult GI, so the transition to adult treatment was seamless.
I think that now HE is an adult and making the crucial decisions regarding his life, he came to realize that he did need additional help. He has been labeled in the top 10% of extreme cases. He finally realizes that he MUST take this disease seriously, yet not allow the disease to define him.
I wish you and your little one good luck. Be your child's advocate. Make a list of questions. *keep a diary of daily aches and pains, meds, doctor visits, test results. That proved invaluable to me and is still useful 15 years later.
Mayo in Rochester...worth every penny...and I work for $10/hr, yet I wouldn't send him anywhere else.

 

[greypup]

I wish that I knew about Dr Faubion before we left. It sounds ideal to work with a specialist who is certified to treat peds and adults.

I am fortunate that my daughter does take the disease seriously. She presented very ill and had resection immediately. She wants the med today that will stop this in its tracks and I feel that I need to explore every possibility before making a decision but not take too much time.

Right now the St. Louis doctor has her on Imuran and it's only been three weeks. We were told to give it a good three months to determine if its the right medication. Meantime, she has a low level of activity.

I'm anxious to hear the findings of Mayo. I'm glad we went but wished that I knew the doctor wouldn't be available after the tests were finished.

 

[Brian'sMom]

I've recently heard at our kc appt on dec 9 that dr faubion is heavy into researching the latest in ibd meds and the newest treatment out there. Glad to read this thread and learn more about him.

 

[greypup]

I agree. I want to hear more about Dr Faubion. He sounds like he has everything that we are all thirsty for.

 

[CD mom]

If you google "William Faubion" you will find information. Also, you can see links to 2 You Tube presentations by Dr. Faubion about treatment of IBD of children and adults at Mayo . I especially like "Inflammatory Bowel Disease in Children-Mayo Clinic" tape. He explains not only what most of us already know, the 3 classes of drug therapy available, but also about the entire clinical approach they adhere to, the clinical trials and the surgical resources that are unique.

Because I am a new member, I am not allowed to post the direct link. Sorry.
Diane

:sun:

 

[Jmrogers4]

Here you go CD mom
http://www.youtube.com/watch?v=BTYoAQtih9U
http://www.youtube.com/watch?v=7Z1FwSRl0kg

 

[Jmrogers4]

Just caught the first few seconds of each one since I'm at work but I'm going to watch them tonight. Thanks

 

[greypup]

I like him!

4 clinical trials being run at Mayo!

Also the question he asks on the second video is the exact one I am seeking. What happens to these children 10 plus years after diagnosis and treatments?

I will def be following him. SO wish I had known about him before our visit w/Dr. Tung. But I would hope that she also practices with the same philosophies.

Thanks for the links.

 

[kimmidwife]

Watching the videos now.

 

[Mehita]

Is he in Rochester?

 

[Brian'sMom]

Is he in Rochester?

Yes he is.