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KSGAMMA's Photo KSGAMMA Posts: 2,324
12/9/13 8:30 P

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I was diagnosed with Crohn's Disease when I needed surgery in 2004. My Gastroenterologist figures I was probably born with the Disease and according to my baby book I was first hospitalized at about 5 weeks of age for intolerance for my formula and bowel issues. I've only had surgery once and that was in 2005. The surgeon did a by-pass in my Duodenum in the upper small bowel. In the same surgery, I had a resection of the small and large intestines removing both my Illium and Appendix. I'm on several medications but not Humira or Remecade. As a child and young adult I was accused of being a Hypochondriac and had tests for gallbladder and was checked out for appendicitis over and over. I miscarried 4 sets of twins and with all 5 of my pregnancies, I was sick both ends from day one. I have always felt my whole life as if I had a mild case of flu but fortunately for me, even with the Crohn's I seldom vomit. There are times during a flare that vomiting would be a relief however.

I have several other chronic conditions that have been diagnosed in the last 17 years and have been very fortunate that apart from some small flares, my Crohn's has been inactive. Mind you, I tend to avoid a lot of the foods that really bother me when in a flare and just don't eat them any more. As a child I always said I hated a lot of vegetables, some fruits and fatty meats. I now know that the ones I hated were the ones that made me sick or hurt me after eating them. If it wasn't so I would have been in real trouble while I was dealing with Type II Diabetes and being Insulin dependent, Obstructive Sleep Apnea and getting used to a C-Pap Machine for sleeping, Restless Leg Syndrome, Dilated Cardiomyopathy and dealing with having a pacemaker and defibrillator implanted in my chest as well as dealing with often going into Congestive Heart Failure and most recently Mitral Valve Regurgitation - I go into Sunnybrook Hospital in Toronto to have a procedure done to try and fix the leak in the Mitral Valve on 18 Dec.

I haven't had a Colonoscopy for at least 10 years and recently read that it is not advisable for people with advanced Congestive Heart Failure. I have a check-up tomorrow with my Gastroenterologist but anticipate no problems. I had an issue with my kidneys this past summer due to being over medicated after losing 30 lbs. My meds for my Diabetes and Heart were cut back but those for the Crohn's weren't changed so I'm hoping that perhaps tomorrow the Dr. will decide I can cut back on some of those as well. I take about 60 pills a day - prescription and supplements.

Anyone else I've met with Crohn's has been overly thin or thin - the opposite is so for me and I was well over 200 lbs. when I started dieting a year ago. Before my surgery in 2005, I had gone 2 years with very very little solid food and mainly a liquid meal replacement and not as many as recommended due to the costs. I lost a lot of weight but nothing like I would have expected for 2 years.

My Gastro will give me a prescription once a year for 30 Percocet for pain and asks that I only take one a day and only if really needed. He is worried that I would become addicted to them. With all my conditions, that is the only pain med I am allowed to have except 1/2 the daily recommended dose of acetaminophen.

I would be interested in hearing from others about their size, the management of their Crohn's, how they handle pain, if they find they have multiple medical issues once they have Crohn's, etc.

Lin from Peterborough, ON., Canada

10 STEPS TO SELF-CARE - If it feels wrong, don't do it; Say "exactly" what you mean; Don't be a people pleaser; Trust your instincts; Never speak bad about yourself; Never give up on your dreams; Don't be afraid to say "No"; Don't be afraid to say "Yes"; Be kind to yourself; Let go of what you can't control; Stay away from drama and negativity as much as possible. (unknown)

Lost 48 lbs. in 2012 & 13 but gained 30 back!


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