- Joined
- Jul 24, 2014
- Messages
- 3
Hi everyone, I've been reading through this forum a lot recently. I'm trying to find people with a similar experience, and hopefully some people a few more years down the road that have some good advice.
I went to see my doctor for a routine physical in early 2011. One topic that came up was that I was having bowel movements 4-8 times a day. I was 29 at the time and thought it was because I had a "eat anything I want" type of diet, and I've always been a drinker. He sent me to the GI doc, who got me in for a CT scan and colonoscopy. Slight inflammation in my ileum, but no pain. He had me start Asacol immediately and diagnosed me with Crohn's. I thought he was wrong because I felt fine, but I stuck with the Asacol and continued as usual. I was an off and on cigarette smoker but haven't smoked since that day.
A year later, I had my first "flare up" which consisted of about 2 days of abdominal pain and a fever. I had zero energy and was stuck in bed. I had just returned from Europe where I ate a bunch of unusual stuff and drank a lot of vodka and this stuff that's kind of like moonshine (home brewed in Lithuania), and figured that's what set me off. I was back on my feet in a few days and felt 100%.
My GI doc said I had a mild case of Crohn's and that people with a mild case tend to stay that way. He had me increase my Asacol dosage, which I'm still not sure about. He said Asacol is "what all the GI's start with, even though there's no hard evidence that it helps." I'm still on Asacol even though this doc's plan is to put me up to the next level drug, 6MP. I'm hesitant. He's old-school and about 5 minutes away from retirement and seems like he couldn't care less about what happens to me. I live in a small county and he's the Crohn's disease expert here, so as far as GI docs, there isn't someone else to see.
My flare ups have continued since then like clockwork, every 2 months. I would just stay in bed, drink lots of water, and they'd pass after a couple days. Could be worse, but I have to miss work, etc. Now I have a baby daughter, which makes it way harder.
I started seeing a new doctor in the Spring of 2013 who practices "Integrative Medicine." She had me stay on Asacol. I took a food sensitivity test (ALCAT) that outlined Red/Orange/Yellow/Green categories of what was safe for me to eat. This doctor's plan was to heal my gut. She got me on Low Dose Naltrexone, Glut Aloe Mine powder (supplement), B12, Probiotics and a new refined diet of things only on my Green list. I started drinking a lot less, BUT...
The day after we outlined that plan I had the worst flare up yet. It landed me in the ER with a bowel obstruction. Thought I was dying. I had the tube up my nose, lots of vomiting, a no liquid or food diet for 36 hours and an IV. The whole flare up was about 5 days start to finish. That was incentive to really dedicate myself to the new diet.
The diet started August 2013. My flare ups have continued every 2 (sometimes every 3) months now, and sometimes they only last a few hours, so it seems like an improvement. After 6 months on the diet, I was supposed to gradually re-introduce items from my Red/Orange/Yellow lists to test if they had an effect on me. Nothing did. I felt fine. I did notice that dairy made me poo more frequently again, and greasy food made me feel gross, so I still stay away from those. I still haven't been able to make it past 3 months without an issue though.
My last flareup was 2 weeks ago. It was 2 days of abdominal pain followed by 2 days of diarrhea, fever, body aches and headache. This was the worst since my hospitalization a year earlier. I see my doctors again in a couple weeks. Pretty sure the GI doc with say "more drugs!" but I'll hear him out anyway. Now I'm scratching my head and trying to figure out what to do next, which is why I'm here.
Here's my plan: Super restricted diet. No dairy, coffee, sugar, alcohol, processed foods, and limited amount of acidic fruits and veggies.
Meds: Asacol 800 Mg (3 times daily)
Supplements: GlutAloeMine, Probiotics, B12, Vitamin D
I know I've got it easy as far as my flare ups being not horrible, and no surgeries, but I'm looking for advice from people with similar experiences. I like the idea of healthy diet more than stronger drugs. Any advice helps. Thanks!
I went to see my doctor for a routine physical in early 2011. One topic that came up was that I was having bowel movements 4-8 times a day. I was 29 at the time and thought it was because I had a "eat anything I want" type of diet, and I've always been a drinker. He sent me to the GI doc, who got me in for a CT scan and colonoscopy. Slight inflammation in my ileum, but no pain. He had me start Asacol immediately and diagnosed me with Crohn's. I thought he was wrong because I felt fine, but I stuck with the Asacol and continued as usual. I was an off and on cigarette smoker but haven't smoked since that day.
A year later, I had my first "flare up" which consisted of about 2 days of abdominal pain and a fever. I had zero energy and was stuck in bed. I had just returned from Europe where I ate a bunch of unusual stuff and drank a lot of vodka and this stuff that's kind of like moonshine (home brewed in Lithuania), and figured that's what set me off. I was back on my feet in a few days and felt 100%.
My GI doc said I had a mild case of Crohn's and that people with a mild case tend to stay that way. He had me increase my Asacol dosage, which I'm still not sure about. He said Asacol is "what all the GI's start with, even though there's no hard evidence that it helps." I'm still on Asacol even though this doc's plan is to put me up to the next level drug, 6MP. I'm hesitant. He's old-school and about 5 minutes away from retirement and seems like he couldn't care less about what happens to me. I live in a small county and he's the Crohn's disease expert here, so as far as GI docs, there isn't someone else to see.
My flare ups have continued since then like clockwork, every 2 months. I would just stay in bed, drink lots of water, and they'd pass after a couple days. Could be worse, but I have to miss work, etc. Now I have a baby daughter, which makes it way harder.
I started seeing a new doctor in the Spring of 2013 who practices "Integrative Medicine." She had me stay on Asacol. I took a food sensitivity test (ALCAT) that outlined Red/Orange/Yellow/Green categories of what was safe for me to eat. This doctor's plan was to heal my gut. She got me on Low Dose Naltrexone, Glut Aloe Mine powder (supplement), B12, Probiotics and a new refined diet of things only on my Green list. I started drinking a lot less, BUT...
The day after we outlined that plan I had the worst flare up yet. It landed me in the ER with a bowel obstruction. Thought I was dying. I had the tube up my nose, lots of vomiting, a no liquid or food diet for 36 hours and an IV. The whole flare up was about 5 days start to finish. That was incentive to really dedicate myself to the new diet.
The diet started August 2013. My flare ups have continued every 2 (sometimes every 3) months now, and sometimes they only last a few hours, so it seems like an improvement. After 6 months on the diet, I was supposed to gradually re-introduce items from my Red/Orange/Yellow lists to test if they had an effect on me. Nothing did. I felt fine. I did notice that dairy made me poo more frequently again, and greasy food made me feel gross, so I still stay away from those. I still haven't been able to make it past 3 months without an issue though.
My last flareup was 2 weeks ago. It was 2 days of abdominal pain followed by 2 days of diarrhea, fever, body aches and headache. This was the worst since my hospitalization a year earlier. I see my doctors again in a couple weeks. Pretty sure the GI doc with say "more drugs!" but I'll hear him out anyway. Now I'm scratching my head and trying to figure out what to do next, which is why I'm here.
Here's my plan: Super restricted diet. No dairy, coffee, sugar, alcohol, processed foods, and limited amount of acidic fruits and veggies.
Meds: Asacol 800 Mg (3 times daily)
Supplements: GlutAloeMine, Probiotics, B12, Vitamin D
I know I've got it easy as far as my flare ups being not horrible, and no surgeries, but I'm looking for advice from people with similar experiences. I like the idea of healthy diet more than stronger drugs. Any advice helps. Thanks!
