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Hello, My name is Kristina and I am from Ontario Canada.
  My boyfriend of 3 years started getting really sick about 2 years ago, he has these cycles were he starts puking for like 12-19 hours at a time. After he starts puking he gets these extreme stomach pains, he is in so much pain that he goes in the shower or the hot tub and sits in the hot water to relieve the pain.
   If the hot water doesn't`t help the pain, we always have to go to the emergency room, by that time he is in so much pain he ask es the doctor for pain meds, because of this the doctors now think he is a drug seeker witch is NOT the case. all he wants is something to take away the abdominal pain, every time we go to the ER we get no where, the nurses and doctors have no clue what is wrong with him, and they think he is mentally unstable.
   He was put on a 72 hour watch in the mental unit and this still lead us no where, Doctors have sent us to London, Ont to see specialist who have done lots of scopes and colonosapies and still cant find what is wrong with him.
  Cody has been having his puking cycles for 2 years now, and we are no longer allowed in the ER room, because every time we go there, they tell us there is nothing they can do, witch leaves Cody so upset that another attack starts and doesn't stop for a few hours, over the last 2 years that Cody has been sick he has lost 60 lbs, as well as his job. He takes so much medication that he has Alot of trouble making a bowel movement, he takes fiber and laxatives, but they don't seem to help, when he trys to make a movement that brings on an attack. we have also had to cancel alot of vacations because when the day comes for us to leave he always has an attack.
   We live together and I am the breadwinner, I would love for Cody to get better so we can start living our lives, and he is no longer in pain.
  Because of Cody's puking he has ulcers and hernias in his esophagus, and this makes him puke blood.
  I strongly believe that Cody has CVS I have brought lots of information about CVS to his doctors, and they haven`t done anything about it. I live in a very small town witch has no doctors that are aware of CVS. is there anyone that can help me find a Doctor is Ontario that understands CVS and can help my boyfriend.
   We are at our breaking point.
This is a list of some of the Meds Cody is on, or has taken:
Cymbalta
Amitriptyline
Oxycodone
Domperidone
Lorazepam
Pantoloc
Alprazolam
Nexium
Zofran
 
If anyone can help me out that would be great I feel like he is just wasting away and know one cares.
thanks for taking the time to read this.
Kristina
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marli

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Reply with quote  #2 
It is so saddening to hear that doctors don't take this seriously. For a long time, everytime we went to the doctor or ER, we were told it was a stomach bug and she would be fine.  It wasn't until we found a GI that was familiar with CVS and that geniunely cares, that we got on the road to treatment.
Does he cycle regularly, like by dates?  Does he have any warning that he is going to be sick, even a few days before?  Exhaustion, nausea, inability to sleep or sleeping too much? Does he take any other types of drugs that are not prescription?  Drinks?  There is so much that goes into determining CVS and the causes.  If you email the office, I believe that you will receive a list of specialists in your area that treat and are familiar with CVS.  Go to the main page and you will see the link.
I hope you find your answers soon.

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marli
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Reply with quote  #3 
Thank-you for replying.
Yes he smokes pot. Everytime he wakes up in the morning he tries to make a bowel movement and when he can`t go, an attack starts then he jumps in our hot tub and goes right under the hot water when he is in the water he takes his meds, and just lays under the water. This is the only way to stop the attack, after that he smokes a joint and can eat breakfast and try to go about having a normal day.
  I feel like the pot helps him relax and calms his nerves, it also allowes him to eat when he does not smoke it he has no appetite at all. He thinks if he doesn't eat he wont puke. he is so skinny now. I think it also help him sleep at night, because if not he is usually in the water all night long, releaving the pain.


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mahler1987

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Reply with quote  #4 
Hi Krystina,
Email pir Progras, Director Judy, for a physicians list.  I know there are physicians in the Ontario area who at least know about this condition.  When you email Judy, put your Provicnce, Canada in the  Subject line with "Physician's List."  Her addy is cvsa@cvsaonline.org

Pattie

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I may have CVS but CVS is not me.
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Reply with quote  #5 

Thank-you for your help, I really appreciate it.

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marli

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Reply with quote  #6 
You will find 50/50 on the smoking pot here, on this site.  I don't know much about it, as my daughter(8) is the one with it.  Some say it helps and other claim that it's what caused them to be sick.
Does he just wake up feeling sick or can you tell from a few days before that something is coming?

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marli
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dave

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Reply with quote  #7 
I am so sorry. YOur story hits home. My husband has cvs and he too lost so much weight and was fading away and the doctors told us there was nothing they could do.  But we kept reading and found a doctor that was willing to try new meds.  My husband is on oxycodone, valium and zofran - he also takes thorazine(to help him sleep at night) and Lcarnitine and COQ10.  He was sick more days than not for the last 8 years. We have 2 boys ages 6 and 8 and it has been hard.  BUT he has not been sick for a little over a month now. That is huge. That never happens with him.  He also smokes pot . He has been trying to cut back a bit and he actually notices a difference. He feels better. He always feels nauseas- but he can actually do things with the kids.  The oxycodone has been the best one so far.  I think it numbs the nerve that is causing all these episodes.  I know because he has been so sick for so long ( 12 years) that the oxycodone also helps with the anxiety.  I hope you find the right doctor- once that happens- it's trial with meds- but there are meds to try. Don't give up- you can help him get thru this.  You can live together with this- it may not be the easiest life- but it is and can be a life.  we wish you the best and please email me if you ever need to talk.
robin

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dave digregorio
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Reply with quote  #8 

I am so sorry to hear of another story just like this one. I am also the breadwinner for me and my girlfriend. I am a full time nursing student dedicated to making sure that no patient of mine will ever feel the way that I have felt and the way you feel now. My girlfriend smokes pot and claims it is the only thing that helps. She is really sensitive to medications and they usually just make her episode longer and much more painful. Eating is hard for her but a lot of times she says that extreme hunger makes her feel more like vomiting. When she is in an episode we encourage a lot of sipping of fluids. She know that it is easier to vomit up something rather than stomach lining or bile. That helps, and the vomiting will come with or without the water in her stomach. I wish I could tell you that this will be easy, but it is the hardest thing I have ever done. To sit and watch this helplessly, even with all my medical knowledge, has been the greatest challange of my life. I think that we as a group have to get the word out there about this disease. I thik that with some type of main stream media coverage and a celebrity endorsement or two we could make this the new big thing. I spend a lot of time alone in the dark writing letters to every talk show I can come up with. The things that help us are eliminating her triggers, reducing stress, and enjoying eachother when she is well....  come to the board often, even if you just read and dont have the strength to post as I do many time per week. I know how you feel and will be here for you in any way possible. Be brave and strong, I know it is hard but I believe that god gave me Melody because I have the ability to care for her, at least this is what I tell myself.

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CVSGirlfriend

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Reply with quote  #9 
Robin, how is everything now?
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