Patient Comments: Crohn's Disease - Diet

What diet changes did you have to make, or continue to make to control the symptoms of your Crohn's disease?

Comment from: Hot Wheels, 75 or over Female (Patient) Published: July 21

My low potassium was just temporary, but I am subject to having hypokalemia again. I had taken an extremely long, hundred plus mile bike ride in very hot Texas summer weather, about 108 degrees that day. I did take plenty of water and a bottle of sport drink, but it wasn't enough to keep my electrolytes up. I was sweating like mad, so I drank water to keep hydrated. However, I was losing minerals (including potassium) through my sweat, and water alone wasn't enough to replenish all of my losses. The sport drink was also pretty weak in electrolytes, under those conditions. When I got home, I drank more water and showered to cool down, then I felt okay. However, I then went to a friend's house for dinner. I should have had a snack at home first. Well, we were all sitting around chatting at the table when I began to feel weird. It was hot in that house, as they don't have central AC. I felt myself drifting off, feeling extremely weak and tired, and I got up to go lie down in the spare room and I dropped like a rock and hit the floor. What was odd was that I could still hear what was going on, I could hear my friends calling my name and trying to revive me but I just could not move or answer them. Slowly I woke up, still on the floor. Then they got me to the cool room, stripped my shorts and tunic off, and packed my legs and arms in wet towels and brought some low-salt V8, and within minutes I felt just fine. Then I had some baked potatoes and guacamole and beans for a snack, all great potassium sources.

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Comment from: Tregaron, 35-44 Male (Patient) Published: March 19

I suppose I got off pretty lightly. I was diagnosed with Crohn's when I was 15, having lost about 50% of my body weight in about 3 months. I was off school for a further 3 months. I used to get terrible stabbing pains just below the ribs on the right hand side. I still do. Breathing exercises help with this. I haven't had a normal stool since then, but rarely have diarrhea. I"m just regular, twice a day. I"ve not let it rule my life at all, I have a pretty stressful job as a civil engineer, I travel a lot, and up until my 40th birthday I was playing rugby in the national 2nd division. At 1.87 m I weighed 100kg (that's 6"2" and 220 lbs). I avoid fats, but everything else is OK. I can't eat big portions, so little and often. I have been prescribed steroids, but to be honest, I find the side effects (especially depression) worse than the symptoms, especially with my kids around.

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Comment from: just_me, 35-44 Female (Patient) Published: January 16

I was diagnosed with Crohn's 18 years ago. I have had one bowel resection surgery (removed 18 inches of small intestine, 12 inches of my large). I have received every treatment under the sun including extensive medications including prednisone, Imuran, Entocort, Remicade, Humira and Cimzia. The side effects from all of these medications and others, have taken their toll and my body, simply stated, has begun to rebel/fight back. Approximately 6 months ago, I made a couple of back to back trips to the emergency room with severe upper abdominal pain along with significant weight loss in a short window of time. Initially I was told it was unconfirmed celiac disease and quickly switched to a gluten-free liquid diet. After 3 weeks, multiple tests including biopsies and blood work, we came to the conclusion it was not celiac disease but pancreatitis, most likely caused by long-term Imuran treatment. I had begun seeing some improvement from my diet so continued with the gluten-free and slowly introducing solids. Throughout this long endeavor I have been able to wean off all medications for Crohn's and shift to a daily life of no abdominal pain, no joint pain and the majority of my days feeling better than ever, all as a result of a strict gluten-free diet. In speaking with my doctor in a follow up visit recently, I was told 3 other Crohn's patients have had similar results by going gluten-free. I just wish someone had suggested this 18 years ago!

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Comment from: lovely, 19-24 Female (Patient) Published: March 07

After a year in consistent pain that had resulted in bed rest due to the lack of nutrients in my body and blinding attacks for no reason, my fiancée tracked down a specialist in Germany who I owe my functioning life to now. No normal crohn diets worked and no matter what I ate or didn't eat, I was always in pain. This doctor however told me for 3 weeks just eat anything that's nutrients are absorbed in the stomach and avoid any that get absorbed in the small intestine and colon, drink 12 glasses of water (tea was included) every day and never have an empty stomach. I had to be consistently eating every hour and a half. Most of the foods I could eat were high protein foods (the protein was absorbed in my stomach and therefore bypassed my small intestine, allowing it to calm) I ate Greek yogurt, protein shakes, meal replacements, lean cut thin sliced chicken and turkey, I could eat vegetables with no skin, cooked or raw. What I couldn't eat was grains, most fruits and nuts, which after the year I was having, I would have given up anything. It has been a month now and I have slowly added other foods to my diet, now being able to determine what actually causes the pain and what was just because the inflammation was so horrible it hurt for everything. It started to improve after only three days and everyone could tell.

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Crohn's Disease - Symptoms Question: The symptoms of Crohn's disease can vary greatly from patient to patient. What were your symptoms at the onset of your disease?
Crohn's Disease - Treatment Question: Describe the various kinds of treatment you've had for Crohn's disease.
Crohn's Disease - Medications Question: What medications have you taken for Crohn's disease? Have any of them helped with symptoms?

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