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mmckay

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Reply with quote  #1 
Hello!

My name is Max, I am 19 from Calgary, Alberta ( Canada). I've got two siblings and we all deal with different forms of GI problems. Worst of us is my brother who is 21, he has Chrones and CVS. He has had vomiting every morning for the past 5 years and it has progressively got worse to where he vomits I would say at least 20 times any point in the day. He has slowly been able to do less and less due to his CVS, having to drop 6 university classes over his past semester. He used to be very athletic, now he feels he cant go anywhere due to his illness. The worst part of all of this is he has given up on his issue, after seeing doctor after doctor and not being able to find any help or receive medication that actually helps with his problem. My parents have offered to fly him down to Mayo Clinic in hopes of finding some better results in the USA. He is not very appealed by this idea as he thinks it will just be a waste of time. I've managed to make a deal with him where if I find 5 people that are over 18 with CVS he and I will go to the Mayo Clinic in hopes to help him. It would be amazing if you could just give a reply stating your age and maybe a brief description of what you go through or what you used to go through, and possibly some helpful tips from people similar to him will help him out! 

Possibly some advice on best Mayo Clinic, doctor, etc. would be useful as we are from Canada!
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wynnak

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Reply with quote  #2 
mmckay,

What a supportive sibling you are! Thank you! So much of what CVS patients deal with needs support from family. People to help and and advocate for them. 

First, My son just turned 21. I host the monthly support calls. Perhaps he would like to call in with you and hear what other people are going through. 

Second, I would recommend going to the CVS Specialists in Milwaukee Wisconsin. Mayo is great.. But, the main medical advisor and world renowned CVS specialist is in Milwaukee. You can find her information on main website under medical advisors. 

If you want to get really crazy, every couple years CVSA hosts a patient and family conference. It is wonderful! Lots of people will schedule their appointments around that so they can see the doctor and attend the conference. 

Another avenue is maybe a phone call with my son or I.

Also, if you follow our face book page, look for the radio interview that Dr. Venkatesan just did. She talks about the college age patients having the most difficult time getting care. 

I would also post on our Facebook page, it gets a little more traffic than this does. But this has SOOOO much information on it.

Please have your brother consider reaching out to us. 


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Blynda
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ginny

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Reply with quote  #3 
Wynnak gave you some great tips.  In the request for age, my CVS child stopped the cycles at around age 30.  She was undiagnosed for around 20 years, had her most cycles during adolescence and college.

That is two toward getting to Mayo!  Or, to Wisconsin to be seen in the CVS center with Dr. V.  One of my adult kids also has Crohn's disease and related autoimmune conditions.  

Hope someone else is reading this so we can get the final 3 needed for your brother to agree to be seen.

You are an amazing brother!  Maybe you have a future in health care?

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Ddirose

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Reply with quote  #4 
Hi Max,
My daughters name is Ellie, she is 19 1/2 now. Getting treatment from someone who knows what they are doing in so important. Please ask your brother again to accept your parents offer, even if only three of us have answered so far. 😊 When Ellie started her supplements and treatment it made such s difference!!!

Rose
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wynnak

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Reply with quote  #5 
That looks like a vote of three.. 

Please keep us updated! 

Also, please sign up for the e-newsletter on the main website to get the notifications about support calls. This months is July 8th.

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Blynda
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Anne_Pokoski123

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Reply with quote  #6 
What a kind and supportive brother you are.  I do not have CVS but my son does.  I would ask him to write about his experience but he has told me that when he discusses his symptoms it often makes him anxious and more prone to having an episode.  So maybe this will count toward your total of five instead.

My son is 23. He has suffered with CVS from the time he was 12 until now. He was not properly diagnosed until he was 19, one week before he was leaving for college. He also was an athlete but as his CVS worsened he couldn't participate in sports anymore. He goes weeks or months between episodes, but stress and anxiety -- good or bad -- are definitely triggers. 

He has a regimen of medications he takes to keep the episodes as infrequent as possible.  The proper dosage of these meds makes a BIG different in how frequently he vomits.  He was vomiting every morning last semester but met with his neurogastroenterologist over winter break and upped the dosage of one med in particular. He's been episode-free since that time. 

My son is running about one year behind in college, due to having to drop classes because of CVS problems.  He has a plan in place for notifying teachers when he is ill, but has to update it each semester when he has new instructors. Documentation and letters from his doctors have been necessary to prove his illness.

I personally visited Mayo Clinic about 10 years ago to deal with a personal health situation that wasn't being solved in my home city. I have to say, my trip to Mayo was not what I hoped it would be. Like the other people have recommended here, I believe your brother should find a doctor who specializes in CVS.  In our case, is was Dr. Gyawali in St. Louis, Missouri. He is the only doctor who is both a neurologist and a gastroenterologist who specializes in CVS in our area.  We got lucky because we live where he lives, but it took us seven years to find the right doctor.

My heart aches for your brother. That is no way to live a life.  I hope your family can find the right care for him. You've come to the right place for help.  It was through the CVSA that we found Dr. Gyawali, and that was because I was desperately searching online for any kind of help for my son. Good luck to you and your brother. 










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Anne M. Pokoski
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shayden

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Reply with quote  #7 
Hi Max -

Add me to your count, please!! I am 37 years old and suffer from CVS. Originally misdiagnosed for about 10 years, Dr. V and her team confirmed CVS about two years ago!

I, like the others, would recommend Dr. V in Wisconsin as she is the queen of CVS and has helped opened my eyes and given me hope. I travel to see Dr. V from Texas because she is THAT good!!

I truly hope your brother doesn’t give up - CVS can be extremely debilitating, but in the end, every episode we overcome makes us stronger; and as you can see by this community, none of us are truly alone!

Please keep us posted on how things go!
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CraftyCat32

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Reply with quote  #8 

Hi Max!

You can add me to your count! I'll be turning 30 this month, I have been suffering with episodes of vomiting since I was 17. My diagnosis has change multiple times. Though the current consensus is CVS. It has been a really rough road but having a supportive family was the best thing I could have had! Its nice that you are trying to help your brother.

I can't tell you the number of doctors that I have been to. Unfortunately it takes time to find someone who is literate in the subject and also believes you! I have found that best advice is to be your own advocate. Its terrible hard to do especially when you are sick all the time but it does get better! You can't give up! I hope this helps you and your family in some way.

My heart goes out for your brother. I had to drop out of nursing school, managed a liberal arts degree instead but took me forever. I haven't been able to work for the past five years but I do get disability now which helps immensely.

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