I was just diagnosed with Crohn's last week although I still need one more test before I go back in early July and find out how they propose to treat it. But reading about it really doesn't sound at all like my experience. So here's my story and I don't know if anyone will relate:
I would say all of my life I didn't digest starch well. It never tasted like anything but paste to me and I never really did understand why people liked it. It also made me gain weight like crazy whenever I ate it - I could gain 10 pounds in a week if I ate starch like normal people and it would take me up to a year to lose it once I quit eating it. So bottom line was I stayed away from foods that obviously had it and unconciously stayed away from foods I didn't realize had high levels of it but did (less than completely ripe bananas and apples for example).
All of this just got worse as I got older. Then, in 2005 my car was totalled when a 16 year old kid rear-ended me and I had a lot of soft tissue damage in my back. I didn't want to take prescription pain killers because I'm allergic to a lot of them, so the doctor told me to try over the counter Alleve. As soon as I took the first one my stomach hurt. Since that was pretty well known for Alleve and I didn't know that it was the devil yet, I ate starch to coat my stomach. The pain went away, but right away my stomach began to make noise and I had pain all the way through my system. It was horrible but the pain was gone so I took it. I wish I'd known back then that the stuff is the devil because I would have quit right away, but I'm not sure they even knew then that it caused a lot of IBD problems. I never took more than one at a time or more than two a day, but I did become allergic to it and had to stop taking it. I stopped eating starch and eventually the weight came off.
In 2010 I was transferred to Costa Rica where it's extremely difficult to stay away from starch, not to mention that they have a lot of vegetables with which I am unfamiliar. It took two months and my entire right side popped out like I had a tumor. I didn't feel like I had gas or acid but when I went to the doctor and he sent me to a GI Specialist, after an endoscopy/colonoscopy and ultrasound the GI told me I had erosion in my esophagus and colon and two ulcers. No h-pylori or polyps. No mention of Crohn's or anything else although he said I was full of inflammation. The main thing he told me was that part of my colon was not working right. He asked me what I was eating that was different and I said starch. He told me not to eat any more of it (although he didn't know what I would eat in Costa Rica). He told me to take Omeprazole and that was it. I lived two years in absolute hell trying to avoid starch and I can tell you it ruined my life there. I basically was a complete prisoner to my diet trying to figure out everything that had starch in it and getting rid of it. As time went on, it got worse and worse until even trace elements of starch caused immense pain and an almost complete shut down of my colon. After I hurt my foot and I couldn't even take a Tylenol because it's bound with starch, I had had enough and transferred back to the US. (And mind when I say starch, that is what I mean, not gluten. Rice is the absolute worst thing for me and always has been.)
I came back to a life not much improved. Starch is in everything because it's a cheap filler so I don't dare eat anything in a restaurant or someone's home. I've never cooked and didn't know the first thing about food so this whole experience was a nightmare for me. Everyone around me doesn't listen or comprehend or whatever so they all think it's gluten and constantly try to poison me then get angry that I can't eat what they made or bought for me. Travel, once my favorite thing, is now a nightmare.
So, I finally go get another endoscopy/colonoscopy to see if things have improved or gotten worse and my GI doctor told me I have Crohn's and this time she removed a polyp. Honestly, I don't know how I have Crohn's. I have never had cramps, nausea or diarrhea. Taking digestive enzymes and probiotics for two years hasn't helped at all. In fact, since starch is used as a filler or binder in them, most of them make me inflame and feel like I've eaten glass. And since nothing moves right, I feel like I've eaten glass that tears up my insides for a good three to four days (that's how I react to any form of starch). I'm also always full of inflammation. I guess the only good thing she told me is that the erosion in my esophagus and my two ulcers have healed.
This diagnosis has me even more confused and doesn't seem right, but maybe I just don't know enough. What I do know is that even though no one in my family has been diagnosed with any of these diseases, my father died of lymphoma in his stomach and my niece died of stomach cancer. So right now just feeling like my life is complete hell and I'll probably just die of cancer after living in hell for how ever long I have left. Just not feeling great about it all right now or like I have the right answers.
Does chronic inflammation and constipation without any diarrhea, cramps, nausea set off by any form of starch sound familiar? (By the way, lactose doesn't bother me a bit and neither do non-starchy fruits or vegetables.)
I would say all of my life I didn't digest starch well. It never tasted like anything but paste to me and I never really did understand why people liked it. It also made me gain weight like crazy whenever I ate it - I could gain 10 pounds in a week if I ate starch like normal people and it would take me up to a year to lose it once I quit eating it. So bottom line was I stayed away from foods that obviously had it and unconciously stayed away from foods I didn't realize had high levels of it but did (less than completely ripe bananas and apples for example).
All of this just got worse as I got older. Then, in 2005 my car was totalled when a 16 year old kid rear-ended me and I had a lot of soft tissue damage in my back. I didn't want to take prescription pain killers because I'm allergic to a lot of them, so the doctor told me to try over the counter Alleve. As soon as I took the first one my stomach hurt. Since that was pretty well known for Alleve and I didn't know that it was the devil yet, I ate starch to coat my stomach. The pain went away, but right away my stomach began to make noise and I had pain all the way through my system. It was horrible but the pain was gone so I took it. I wish I'd known back then that the stuff is the devil because I would have quit right away, but I'm not sure they even knew then that it caused a lot of IBD problems. I never took more than one at a time or more than two a day, but I did become allergic to it and had to stop taking it. I stopped eating starch and eventually the weight came off.
In 2010 I was transferred to Costa Rica where it's extremely difficult to stay away from starch, not to mention that they have a lot of vegetables with which I am unfamiliar. It took two months and my entire right side popped out like I had a tumor. I didn't feel like I had gas or acid but when I went to the doctor and he sent me to a GI Specialist, after an endoscopy/colonoscopy and ultrasound the GI told me I had erosion in my esophagus and colon and two ulcers. No h-pylori or polyps. No mention of Crohn's or anything else although he said I was full of inflammation. The main thing he told me was that part of my colon was not working right. He asked me what I was eating that was different and I said starch. He told me not to eat any more of it (although he didn't know what I would eat in Costa Rica). He told me to take Omeprazole and that was it. I lived two years in absolute hell trying to avoid starch and I can tell you it ruined my life there. I basically was a complete prisoner to my diet trying to figure out everything that had starch in it and getting rid of it. As time went on, it got worse and worse until even trace elements of starch caused immense pain and an almost complete shut down of my colon. After I hurt my foot and I couldn't even take a Tylenol because it's bound with starch, I had had enough and transferred back to the US. (And mind when I say starch, that is what I mean, not gluten. Rice is the absolute worst thing for me and always has been.)
I came back to a life not much improved. Starch is in everything because it's a cheap filler so I don't dare eat anything in a restaurant or someone's home. I've never cooked and didn't know the first thing about food so this whole experience was a nightmare for me. Everyone around me doesn't listen or comprehend or whatever so they all think it's gluten and constantly try to poison me then get angry that I can't eat what they made or bought for me. Travel, once my favorite thing, is now a nightmare.
So, I finally go get another endoscopy/colonoscopy to see if things have improved or gotten worse and my GI doctor told me I have Crohn's and this time she removed a polyp. Honestly, I don't know how I have Crohn's. I have never had cramps, nausea or diarrhea. Taking digestive enzymes and probiotics for two years hasn't helped at all. In fact, since starch is used as a filler or binder in them, most of them make me inflame and feel like I've eaten glass. And since nothing moves right, I feel like I've eaten glass that tears up my insides for a good three to four days (that's how I react to any form of starch). I'm also always full of inflammation. I guess the only good thing she told me is that the erosion in my esophagus and my two ulcers have healed.
This diagnosis has me even more confused and doesn't seem right, but maybe I just don't know enough. What I do know is that even though no one in my family has been diagnosed with any of these diseases, my father died of lymphoma in his stomach and my niece died of stomach cancer. So right now just feeling like my life is complete hell and I'll probably just die of cancer after living in hell for how ever long I have left. Just not feeling great about it all right now or like I have the right answers.
Does chronic inflammation and constipation without any diarrhea, cramps, nausea set off by any form of starch sound familiar? (By the way, lactose doesn't bother me a bit and neither do non-starchy fruits or vegetables.)
