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Crohn's Disease Forum » Your Story » Diagnosed after 20+ years of symptoms


05-05-2017, 04:39 AM   #1
zacofalltrades
 
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Diagnosed after 20+ years of symptoms

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
05-05-2017, 05:30 AM   #2
ronroush7
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Hi. Welcome to the forum. I am sorry for all you have been through. You have come to a great place. I look forward to hearing more from you. Thanks for serving this country.
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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
05-05-2017, 08:40 AM   #3
Jabee
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It's really awful when tests are either not read correctly or reported correctly, or both. I had a CT scan last October (severe pain) and the ER doctor told me everything was fine. I was still in pain back home and when I looked at my patient file on the hospital website the top of the scan report said "A preliminary reading was given by" whatever radiologist it was. The actual, correct report showed a partial blockage in my terminal ileum with chronic crohn's changes. They wanted to rush me out so fast that they didn't read the scan properly.

I'm so sorry that it has taken so long for you to get a correct diagnosis and that you have had to suffer for many years without knowing why. I hope the Entyvio gets approved and starts helping soon.
05-05-2017, 10:43 AM   #4
JessPeper
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It's really awful when tests are either not read correctly or reported correctly, or both. I had a CT scan last October (severe pain) and the ER doctor told me everything was fine. I was still in pain back home and when I looked at my patient file on the hospital website the top of the scan report said "A preliminary reading was given by" whatever radiologist it was. The actual, correct report showed a partial blockage in my terminal ileum with chronic crohn's changes. They wanted to rush me out so fast that they didn't read the scan properly.

I'm so sorry that it has taken so long for you to get a correct diagnosis and that you have had to suffer for many years without knowing why. I hope the Entyvio gets approved and starts helping soon.
It's crazy to me how Emergency services try to rush you out of there so quickly. In March I went to the ER in extreme pain I had been throwing up all night. I explained to the Doctor working about my CD and let them know I had strictures. She did some blood work and took a urine sample told me I had a UTI to get dressed I could go home. I told the nurse I have had a uti before and never had I been in pain or had it made me throw up. As I was trying to get up I threw up all over myself and the nurse before they decided they'd give me a CT Scan. 45 minutes after the scan the Doctor came in and told me a surgeon would be coming down to see me. Never explained what was going on, at that point she couldn't even look me in the face. I ended up having 8 inches of small bowel taken out a few hours later.
05-05-2017, 10:51 AM   #5
ronroush7
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I am sorry.

05-05-2017, 11:21 AM   #6
Jabee
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That's just ridiculous. I think part of the problem is that doctors are now so concerned about the opiod epidemic that they suspect everyone who comes to the ER with abdominal pain, even when we actually have a diagnosis of a chronic illness, is just drug seeking. I understand the concern, but just a quick conversation should be enough to reassure the doctors that we're not there because we want to be! After my last hospitalization a year ago I was on pain killers just so I could get up and move around (I still have two kids at home and take care of my 94 year old Mom, too). Although I slowly tapered off by the fall, my pain didn't abate. My GP (GI won't prescribe for pain) told me I could no longer take anything but Tylenol (yes, even with the narrowing of my terminal ileum which causes the pain partial blockages). When I finally went back in February because I was tired of being out of commission several days a week she actually looked at me and asked if I had a problem with pain medication. I couldn't understand why she thought I had a problem when she knew I hadn't taken anything for five months. She finally prescribed something for me--only took two trips to the ER!
05-05-2017, 12:36 PM   #7
JessPeper
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Jabee,

It wasn't until I was laying there bawling my eyes out before she offered anything for pain. That was even after they knew the surgeon was coming down. Which is funny because two months prior I had taken a fall and sprained my ankle and the same Doctor had no problem prescribing me Percocet for that! Seriously? I didn't take them any how. Narcotics make me sick to my stomach. I forced myself to take them when I came home from the hospital because the pain was unbearable. I wish there was some sort of stimulator that these doctors could use so they'd know what it feels like just once!

I give you so much credit for being able to take care of two children and your mother! I struggle to take care of myself and my ten year old most days. When I came home from the hospital my son told me it was nice to have a mom again. Serious pull on the heart strings!
05-06-2017, 12:28 PM   #8
Jabee
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That's insane. They knew you were going to have surgery and still held off pain medication? The last time I went in and they couldn't figure out whether or not I had a partial obstruction they at least gave me something for pain and were nice about it. What they offer also seems to depend on the doctor treating you. Go figure.

To be fair, my kids are all semi-adults: 22, 20, and 18. My oldest is at home but next fall my youngest will be starting college and her older sister will be spending her junior year abroad. I think it's much more physically demanding to parent when the kids are young like yours. We all do the best we can, and that's really all we can ask of ourselves. I often feel that I'm not doing enough (parent guilt), but I try to remind myself that if I'm trying my hardest I can't expect any more from myself.
05-06-2017, 09:35 PM   #9
zacofalltrades
 
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The actual, correct report showed a partial blockage in my terminal ileum with chronic crohn's changes. They wanted to rush me out so fast that they didn't read the scan properly.
That's terrible; I hope the obstruction auto-resolved and didn't require any further intervention. It sucks getting that kind of treatment, especially with your medical history - some ED docs just don't have enough experience with how bad IBD issues can be and that problems can come seemingly out of nowhere, even in a younger patient.
05-06-2017, 09:36 PM   #10
zacofalltrades
 
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45 minutes after the scan the Doctor came in and told me a surgeon would be coming down to see me. Never explained what was going on, at that point she couldn't even look me in the face. I ended up having 8 inches of small bowel taken out a few hours later.
Wow, that's terrible. I hope you make a rapid recovery after all of that.
05-08-2017, 07:34 AM   #11
JessPeper
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Wow, that's terrible. I hope you make a rapid recovery after all of that.
7 Weeks post- Op tomorrow. Its been a bumpy road with healing complications but I can finally see the light at the end of the tunnel!
05-08-2017, 11:23 AM   #12
ronroush7
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7 Weeks post- Op tomorrow. Its been a bumpy road with healing complications but I can finally see the light at the end of the tunnel!
Glad to hear that.

05-08-2017, 01:36 PM   #13
Asra
 
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"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 was put on the same medical schedule! I haven't failed a TNF-alpha nor have I ever been put on any other medication. My original GI immediately put me on 9mg daily of budesonide and then after 6 months (yes, long, I know) I was weaned off and put onto vedolizumab (Entyvio) exclusively!

I'm so excited because you're the first one I've heard of/from/looked at that was put on the same plan as I was! Anyone else I have talked to/with has looked at me like a three-headed octopus whenever we discussed medical menus. So hooray for newbies being put on the same path! *HUG*

Now I'll go make my own story post. Hope to see you around!

<3

~Asra

Last edited by Asra; 05-08-2017 at 03:54 PM.
05-08-2017, 01:50 PM   #14
ronroush7
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Looking forward to hearing more from you.

05-08-2017, 07:07 PM   #15
zacofalltrades
 
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I was put on the same medical schedule! I haven't failed a TNF-alpha nor have I ever been put on any other medication. My original GI immediately put me on 9mg daily of budesonide and then after 6 months (yes, long, I know) I was weaned off and put onto vedolizumab (Entyvio) exclusively!

I'm so excited because you're the first one I've heard of/from/looked at that was put on the same plan as I was! Anyone else I have talked to/with has looked at me like a three-headed octopus whenever we discussed medical menus. So hooray for newbies being put on the same path! *HUG*

Now I'll go make my own story post. Hope to see you around!

<3

~Asra
Thanks for the input! How has the vedolizumab been working for you? I understand it's slower to start working but haven't talked with anyone who has been treated? Please keep in touch with updates. I'm still working on an appeal for HMO approval; otherwise, it's back to the VA on a TNF-alpha.
05-08-2017, 09:15 PM   #16
cmack
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Hi zacofalltrades,

I really appreciate your service, not only to the U.S.A. but to the entire free world. You have my full respect and support. You can talk to me any time. I'm sorry you get to ride the bowel disease bus with the rest of us, still I'm happy to welcome you.

Best wishes for a healthy life,

cmack
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