- Joined
- May 5, 2017
- Messages
- 8
I'm hoping to find some respite here with the support. I feel like this is something that unless you live with, it's hard to understand.
My symptoms started in my early teenage with abdominal pain and frequent BMs of mostly mucous; but, the real issues didn't start until high school. They began with 7-10 BMs daily of terrible diarrhea (Bristol 7) and were accompanied by a 40-lb weight loss.
My symptoms waxed and waned over the years but after high school, they were decreased enough for me to join the military. I served four years in the Marine Corps to include one combat deployment (Iraq 2003) and one Western Pacific deployment (Post 9/11) and every time I was overseas, i experienced the most terrible symptoms. I'm sure it was a combination of the terrible food we consumed coupled with stress and a lack of sleep. This led me to believe that my symptoms were somehow related to what I was putting in my body which started my journey with food experimentation beginning in late 2003 after my return from Iraq.
For two months at a time I would completely remove one suspected allergen. I started with dairy and noticed a big improvement in my bilateral lower quadrant pain; after two months, I reintroduced dairy and noticed how congested I quickly became again. I then moved on to wheat. I did quite well on a wheat-free diet and further reading led me to learn about gluten. I next did a gluten-free diet which resolved many of my symptoms; thus, I stayed gluten-free (mostly) for many years. My belief in being intolerant to gluten was reinforced by the fact that every time I ate pizza, a sandwich, or had a couple Coronas, I would.. well, you know how that ends.
In April 2005 I went to the emergency department for severe abdominal pain. A CT scan was performed and the ED doctor told me that all it showed was "a non-specific gas pattern." I learned just a few weeks ago, after getting my eyes on the radiologist comments, that it showed bowel wall thickening and other findings consistent with inflammatory bowel disease. This really has become a point of contention for me since I could have been addressing this issue for so many years and I was never informed of this finding.
Later in 2006 I had an allergist test me for IgA to gluten (along with a long list of other food allergies that I have) and all he told me was that it was positive, which further reinforced my belief that I actually had Celiac disease. I recently got ahold of this report and my gluten IgA was on the low end of the normal range. But until the present, I have maintained primarily a gluten free diet but would occasionally have flair-ups that I would rationalize as "Oh, something must have had gluten in it.
That brings us to 2017. The last year or so my symptoms have been terrible, maybe the worst they have ever been. I haven't seemed to loose any weight (which I could tolerate at the moment) but the bloating, pain, diarrhea, and gas (my poor wife) have been close to intolerable at times. Through all of my years of education and learning about medical conditions, I never once suspected that I had Crohn disease. It all happened this year incidentally. My dad died four years ago from colon cancer; so, I decided that when I was 35, I would get a baseline colonoscopy, and I did. My colon looked pretty good but the gastroenterologist noticed a lesion at the terminal ileum (it looked like a cut in the tissue). He advanced the scope to intubate the TI and saw many inflamed, ulcerated, and swollen areas. He biopsied these areas and the pathology was consistent with Crohn colitis.
So, my journey has begun. Two weeks ago I started on budesonide EC (Entocort) 9 mg daily which I will taper to complete 3 months. I am trying to get HMO authorization to start vedolizumab (Entyio), my gastroenterologist and I decided that this would be the best choice for me given the lower incidence of side effects and allergic reactions (since I have a strong history of allergies), even though I haven't failed a TNF-alpha antagonist.
I can't tell what food actually exacerbate by symptoms. I'm generally safe if I stick with egg whites and plant-based protein powders mixed with almond milk, but that diet sucks after about a week. Any time I eat something enjoyable, my stomach bloats out like I'm 7 months pregnant. In general dairy is still bad, fast food, fried food, and most packaged/processed stuff is a no-go. I avoid most grains but fair well with white bread. Chicken is better than beef but I'm allergic to fish. Applesauce and canned pairs seem tolerable but I've been reluctant to consume many fruits or vegetable the last few months.
I joined the Entyvio support group and look forward to providing updates and insight to my infusions. Thanks for hanging in there if you read this far.
Z
My symptoms started in my early teenage with abdominal pain and frequent BMs of mostly mucous; but, the real issues didn't start until high school. They began with 7-10 BMs daily of terrible diarrhea (Bristol 7) and were accompanied by a 40-lb weight loss.
My symptoms waxed and waned over the years but after high school, they were decreased enough for me to join the military. I served four years in the Marine Corps to include one combat deployment (Iraq 2003) and one Western Pacific deployment (Post 9/11) and every time I was overseas, i experienced the most terrible symptoms. I'm sure it was a combination of the terrible food we consumed coupled with stress and a lack of sleep. This led me to believe that my symptoms were somehow related to what I was putting in my body which started my journey with food experimentation beginning in late 2003 after my return from Iraq.
For two months at a time I would completely remove one suspected allergen. I started with dairy and noticed a big improvement in my bilateral lower quadrant pain; after two months, I reintroduced dairy and noticed how congested I quickly became again. I then moved on to wheat. I did quite well on a wheat-free diet and further reading led me to learn about gluten. I next did a gluten-free diet which resolved many of my symptoms; thus, I stayed gluten-free (mostly) for many years. My belief in being intolerant to gluten was reinforced by the fact that every time I ate pizza, a sandwich, or had a couple Coronas, I would.. well, you know how that ends.
In April 2005 I went to the emergency department for severe abdominal pain. A CT scan was performed and the ED doctor told me that all it showed was "a non-specific gas pattern." I learned just a few weeks ago, after getting my eyes on the radiologist comments, that it showed bowel wall thickening and other findings consistent with inflammatory bowel disease. This really has become a point of contention for me since I could have been addressing this issue for so many years and I was never informed of this finding.
Later in 2006 I had an allergist test me for IgA to gluten (along with a long list of other food allergies that I have) and all he told me was that it was positive, which further reinforced my belief that I actually had Celiac disease. I recently got ahold of this report and my gluten IgA was on the low end of the normal range. But until the present, I have maintained primarily a gluten free diet but would occasionally have flair-ups that I would rationalize as "Oh, something must have had gluten in it.
That brings us to 2017. The last year or so my symptoms have been terrible, maybe the worst they have ever been. I haven't seemed to loose any weight (which I could tolerate at the moment) but the bloating, pain, diarrhea, and gas (my poor wife) have been close to intolerable at times. Through all of my years of education and learning about medical conditions, I never once suspected that I had Crohn disease. It all happened this year incidentally. My dad died four years ago from colon cancer; so, I decided that when I was 35, I would get a baseline colonoscopy, and I did. My colon looked pretty good but the gastroenterologist noticed a lesion at the terminal ileum (it looked like a cut in the tissue). He advanced the scope to intubate the TI and saw many inflamed, ulcerated, and swollen areas. He biopsied these areas and the pathology was consistent with Crohn colitis.
So, my journey has begun. Two weeks ago I started on budesonide EC (Entocort) 9 mg daily which I will taper to complete 3 months. I am trying to get HMO authorization to start vedolizumab (Entyio), my gastroenterologist and I decided that this would be the best choice for me given the lower incidence of side effects and allergic reactions (since I have a strong history of allergies), even though I haven't failed a TNF-alpha antagonist.
I can't tell what food actually exacerbate by symptoms. I'm generally safe if I stick with egg whites and plant-based protein powders mixed with almond milk, but that diet sucks after about a week. Any time I eat something enjoyable, my stomach bloats out like I'm 7 months pregnant. In general dairy is still bad, fast food, fried food, and most packaged/processed stuff is a no-go. I avoid most grains but fair well with white bread. Chicken is better than beef but I'm allergic to fish. Applesauce and canned pairs seem tolerable but I've been reluctant to consume many fruits or vegetable the last few months.
I joined the Entyvio support group and look forward to providing updates and insight to my infusions. Thanks for hanging in there if you read this far.
Z
