Thank you all for everything
Question:
coffydog I tried sending you an email and it bounced back. I am a 22/f. I have crohns and an ileostomy. I have seen dr. Hanouer and his fellow doctors. I was trying to find out where you are located. If you could reply to my email or back on this message board I would appreciate it. Thanks, BRANDY
Response:
All the best on your son’s surgery. I know my illeosectomy gave me my life back. Prayer go out to you – HH
Response:
Dear Coffy, I had my colon removed nearly 11 years ago as a result of Crohn’s colitis and have lived fully with an ileostomy. I jet around the world, travel 75 km to work each day and back, swim, cycle, motor cycle, dance, you name it. Together with the stoma nurse we planned the best siting because I still wanted to go diving, which I did after the op. Your son should feel somewhat better a month or so after the operation, but the actual length of time for full(ish) recovery is very individual. As this is a life saving operation one just has to ride with it. I just know that if I had not had the operation that I would not have lasted very long in the state that I was. It took me a good two years to get back up to par slowly building up the weight training, cycling and eventually going back to diving. The caveat is that I never regained 100% energy levels and get tired easily, but I do have other health problems on top of Crohn’s. The most important thing with an ile(col)ostomy is to drink 2-3 litres per day, chew properly and not to eat too much fibre and raw veges until one is confident that no blockages are going to occur. I find these pages excellent for diet even though the author has a colostomy they are more than relevant for an ileostomy. http://www.ostomy.fsnet.co.uk/foods.html http://www.ostomy.fsnet.co.uk/diet.html The author has done a great job of categorising foods and their consequences. Here are some further useful, in my opinion, pages: http://www.gicare.com http://www.gnc.com/health_notes/ http://www.gnc.com/health_notes/Concern/Crohns.htm. http://www.scdiet.org. http://www.soulhealer.com/crohnsdis.htm http://www.ccfa.org www.j-pouch.org If you would like even more reading I suggest that you search for the string ‘Vanny and colon removal’ on http://www.talkaboutsupport.com/ and read the thread ‘Removal of the Colon???’ amongst others. All the best to your son. By the way tell him not to put his slippers under the hospital bed. I spewed up in mine after the op. and now stow them safely away in the cupboard prior to being carted off. Tell him I empathise with him because I am going to have my 7th op most likely in January to remove a (hopefully) benign tumour in my abdomen. Vanny Hello my friends: I haven’t posted for quite sometime but of course have periodically checked in to see how you are all doing. My 22 year old son has been battling Crohn’s for almost two years now. Unfortunately he developed vicious perirectal disease and fistulizing Crohn’s and will soon be undergoing a proctocolectomy. We have exhausted any and all options: chemo, stem cell transplant; hyperbaric therapy; homeopathic stuff; diets, you name it, we explored all options. no less than five learned Crohn’s experts from Bruce Sands to Stephen Hanauer has told us this is the end of the treatment road and surgery is the only choice. My boy has become disabled; he is on 100mcgs of fentanyl and 30mg Percocet for pain control that doesn’t control his pain. He can hardly walk from the pain that has taken over his life and changed him from a robust Thai boxer racing headlong exploring different countries and continents, achieving high honors at University to a pale, tired, wan young man, aged beyond his years. You’ve all been here for us though, answering questions, relating experiences, giving opinions and lobbing necessary humor when it is most needed. I thank you again, we thank you again. coffy — For Duty and Humanity!
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Good luck to your son and his surgery and may he get his life back after recovery. Please let us know how the surgery goes for him. Will be waiting for updates, UM MOM Susan
– Hide quoted text — Show quoted text -> Hello my friends: > I haven’t posted for quite sometime but of course have periodically > checked in to see how you are all doing. My 22 year old son has been > battling Crohn’s for almost two years now. Unfortunately he developed > vicious perirectal disease and fistulizing Crohn’s and will soon be > undergoing a proctocolectomy. We have exhausted any and all options: chemo, > stem cell transplant; hyperbaric therapy; homeopathic stuff; diets, you name > it, we explored all options. no less than five learned Crohn’s experts from > Bruce Sands to Stephen Hanauer has told us this is the end of the treatment > road and surgery is the only choice. My boy has become disabled; he is on > 100mcgs of fentanyl and 30mg Percocet for pain control that doesn’t control > his pain. He can hardly walk from the pain that has taken over his life and > changed him from a robust Thai boxer racing headlong exploring different > countries and continents, achieving high honors at University to a pale, > tired, wan young man, aged beyond his years. > You’ve all been here for us though, answering questions, relating > experiences, giving opinions and lobbing necessary humor when it is most > needed. I thank you again, we thank you again. > coffy > — > For Duty and Humanity!
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Hello Coffy, I am so sorry about your son, so sorry he has lost his life as he knows it, and so sorry he is in so much pain. I lost my life for three months, when I was debilitated with Crohns, but was fortunate enough to have responded to prednisone and hopefully Imuran. I have Crohns Colitis and haven’t experience a fistula YET. May God bless you and your son, and I hope after the surgery he can slowly rebuild his life back. When I was so ill, all I wanted was my simple, dull life back. I thought I had lost it forever. Nora – Hide quoted text — Show quoted text ->Hello my friends: > I haven’t posted for quite sometime but of course have periodically >checked in to see how you are all doing. My 22 year old son has been >battling Crohn’s for almost two years now. Unfortunately he developed >vicious perirectal disease and fistulizing Crohn’s and will soon be >undergoing a proctocolectomy. We have exhausted any and all options: chemo, >stem cell transplant; hyperbaric therapy; homeopathic stuff; diets, you name >it, we explored all options. no less than five learned Crohn’s experts from >Bruce Sands to Stephen Hanauer has told us this is the end of the treatment >road and surgery is the only choice. My boy has become disabled; he is on >100mcgs of fentanyl and 30mg Percocet for pain control that doesn’t control >his pain. He can hardly walk from the pain that has taken over his life and >changed him from a robust Thai boxer racing headlong exploring different >countries and continents, achieving high honors at University to a pale, >tired, wan young man, aged beyond his years. > You’ve all been here for us though, answering questions, relating >experiences, giving opinions and lobbing necessary humor when it is most >needed. I thank you again, we thank you again. >coffy
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I promise myself to never write, but when I read a story like this, I can’t stand by and not try. All my critics become nothing but critics who have never tried the theory. So how can they judge the effiacy of this. And if they have tried, they have not the astuteness to pursue it. A 22 yr old boy should not be so ill and I ask you to please read my layman’s theory on the cause of crohns on website http://ascc.healingwell.com/info/gailfaq.htm Strange and almost unbelievable theory but if you will pursue it, it will help immeasureably (along with the doctors help, if you will). It is a manmade illness, I am certain, and watched it for a long time and the weirdness of it is apalling. It also works in mysterious ways with no explanation as to why stimulants can be so damaging as to pierce another person other than the user. Also, natural herbs that have natural stimulants are harmful also, as is Xanax and Buspar to the crohnie. Xanax and Buspar are not true tranquillizers (like Valium and Ativan which do no harm) they are anti-anxiety drugs and who knows what that means. I have seen them do harm. Nothing lost on this, don’t let your disbelief keep you from making an effort. I know Univ of Chicago is doing a lot of research on this, and have gained incalcuable treatments, but the cure will always evade them, including the most illustrious doctors because they insist on looking for a scientific cure rather than seening this as the weird illness it is and responds to nothing except the extreme power of a stimulant.
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- Hide quoted text — Show quoted text – > Hello my friends: > I haven’t posted for quite sometime but of course have periodically > checked in to see how you are all doing. My 22 year old son has been > battling Crohn’s for almost two years now. Unfortunately he developed > vicious perirectal disease and fistulizing Crohn’s and will soon be > undergoing a proctocolectomy. We have exhausted any and all options: chemo, > stem cell transplant; hyperbaric therapy; homeopathic stuff; diets, you name > it, we explored all options. no less than five learned Crohn’s experts from > Bruce Sands to Stephen Hanauer has told us this is the end of the treatment > road and surgery is the only choice. My boy has become disabled; he is on > 100mcgs of fentanyl and 30mg Percocet for pain control that doesn’t control > his pain. He can hardly walk from the pain that has taken over his life and > changed him from a robust Thai boxer racing headlong exploring different > countries and continents, achieving high honors at University to a pale, > tired, wan young man, aged beyond his years. > You’ve all been here for us though, answering questions, relating > experiences, giving opinions and lobbing necessary humor when it is most > needed. I thank you again, we thank you again. > coffy
dear coffy the surgery might return your son to more normalcy…your family is in my prayers annie
Response:
Hello my friends: I haven’t posted for quite sometime but of course have periodically checked in to see how you are all doing. My 22 year old son has been battling Crohn’s for almost two years now. Unfortunately he developed vicious perirectal disease and fistulizing Crohn’s and will soon be undergoing a proctocolectomy. We have exhausted any and all options: chemo, stem cell transplant; hyperbaric therapy; homeopathic stuff; diets, you name it, we explored all options. no less than five learned Crohn’s experts from Bruce Sands to Stephen Hanauer has told us this is the end of the treatment road and surgery is the only choice. My boy has become disabled; he is on 100mcgs of fentanyl and 30mg Percocet for pain control that doesn’t control his pain. He can hardly walk from the pain that has taken over his life and changed him from a robust Thai boxer racing headlong exploring different countries and continents, achieving high honors at University to a pale, tired, wan young man, aged beyond his years. You’ve all been here for us though, answering questions, relating experiences, giving opinions and lobbing necessary humor when it is most needed. I thank you again, we thank you again. coffy — For Duty and Humanity!
Response:
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