I had a CT scan with contrast of my abdomen a couple weeks ago. This was part of my follow up with the GI since I have a history of Crohn's in my family. Crohn's can be linked to spondyloarthropathies, and can even be part of what fuels the arthritis condition in this family of diseases. AS is a type of spondyloarthropathy and so is Enteropathic Spondylitis (which is spondylitis that is a result of an inflammatory bowel disease, such as Crohn's). Both of these diseases result in an inflammatory arthritis that attacks the spine... and many of the drugs (TNF blockers) are used in treatment for both spondyloarthropathies and Crohn's. However, anti-inflammatories (from what I have read) are not used in someone who has Crohn's because they are at a greater risk for bleeding... Here are some stats I found about spondyloarthopathies for those interested... for reference I am HLA-B27 positive. This is from Wikipedia (so take it with a grain of salt)... but it did a good job of showing the family of diseases, how they relate to HLA-B27, and characteristics for these diseases... and all in a pretty chart. :)
Conditions
| Condition | Percent of people with the condition who are HLA-B27 positive |
|---|---|
| Ankylosing Spondylitis |
|
| Reactive arthritis (Reiter's syndrome) | 60-80% |
| Enteropathic spondylitis or spondylitis associated with inflammatory bowel disease (including Crohn's disease and ulcerative colitis) | 60% |
| Psoriatic arthritis | 60% |
| Isolated acute anterior uveitis | 50% |
| Undifferentiated spondyloarthropathy (USpA) | 20-25% |
Common Characteristics:
A link to some more information that is not Wikipedia:
http://www.rheumatology.org/practice/clinical/patients/diseases_and_conditions/spondyloarthritis.asp
Anyways, My CT scan showed some abnormalities. I have inflammation in my terminal ileum (think small intestines)... this is consistent with Crohn's, but not a diagnosis of it. As I have learned through research, and through discussion on the kicks.org forum, inflammation in the ileum can be consistent with AS. Since AS is an inflammatory disease, many patients end up having inflammation in their intestines. Many do not know this inflammation exists because they do not have Crohn's symptoms and, therefore, do not have a CT scan done. Here is an article explaining that Ileitis can be symptom or result of having a spondyloarthopathy: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2914216/
- They are in relation to HLA-B27
- Inflammatory arthritis, generally sacroilitis and spondylitis
- Oligoarthritis, generally with asymmertical presentation
- Enthesis (inflammation of the entheses: the sites where the tendons or ligaments insert to the bone)
- Familial aggregation occurs
- RA factor is not present
- Extra-articular feathers, such as involvement of eyes, skin, and genitourinary tract
- Overlap is likely between several of the causative conditions
A link to some more information that is not Wikipedia:
http://www.rheumatology.org/practice/clinical/patients/diseases_and_conditions/spondyloarthritis.asp
Anyways, My CT scan showed some abnormalities. I have inflammation in my terminal ileum (think small intestines)... this is consistent with Crohn's, but not a diagnosis of it. As I have learned through research, and through discussion on the kicks.org forum, inflammation in the ileum can be consistent with AS. Since AS is an inflammatory disease, many patients end up having inflammation in their intestines. Many do not know this inflammation exists because they do not have Crohn's symptoms and, therefore, do not have a CT scan done. Here is an article explaining that Ileitis can be symptom or result of having a spondyloarthopathy: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2914216/
I have had varying stomach issues my whole life, but having a husband with Crohn's and an aunt with Crohn's, I know that none of my symptoms have been as severe as they are in Crohn's patients. I think, after going starch free for a couple months, that I actually have a gluten intolerance and that all this time it has been effecting how I digest foods. I think that it, like every other physical issue, gets worse with stress. The GI even said that my symptoms were not consistent with Crohn's... but that does not mean that I don't have it. Its kind of a curious place to be... If I have Crohn's I truly believe it is a result of AS and not the other way around... I don't believe that I have been secretly living with Crohn's and didn't know until it developed into arthritis. They way I understand Enteropathic Spondylitis is that you have an established IBD and then the arthritis develops... but I am not sure of anything anymore. Both in research and feedback from others with AS... the "gut" and AS are closely related, and so research indicates that an intestinal condition or infection could aide in the development of AS. I do know one thing, having Crohn's doesn't seem to be a better outlook for me versus just having AS. The prognosis seems consistent whether it is AS or another spondyloarthopathy. Either way, I have a disease, or diseases, that are attacking my spine (and possibly my digestive system). My poor body is fighting so hard to protect itself from itself. Being your own worst enemy truly takes a new meaning in this case...
SO, this abnormality leads me to another procedure in which they will be taking biopsies to determine if it is Crohn's or not... fun. From there, we will know if I officially have Crohn's or if this is just some inflammation that it developing in my body. I have also read that taking NSAIDs can create this inflammation in the ileum... so that could be it too? This is what I mean... this waiting, this uncertainty... its BS. I am not sure what a Crohn's diagnosis would really change for me (treatment wise) other than possibly take away my anti-inflammatory... that may mean TNF blockers even sooner than I expected. BUT perhaps it could mean eliminating the NSAID anyways if it is creating the inflammation in my ileum. Good Lord, I will drive myself crazy!
So, I am waiting for my procedure in 10 days and my second Rheumy visit in 13 days. The good news is I should have a lot more information and a long term treatment plan in 2 weeks. I am hoping that this 2 weeks goes by fast and that it treats me well. I am hoping for the best outcome in all this, but honestly... I am not sure what that is anymore.
I am occupying myself by eating starch and gluten again :) This has been kind of fun, but it has been taking a physical toll on me. It has put my stomach in a bit of a whirlwind and I have definitely noticed more pain in my SI joint (and much more stiffness in my back)... :/ Maybe that is a good thing though! If I can control many of my symptoms through food, well I will take it. Its a much better option than many of my alternatives. I will likely be going on a low starch diet in April, and this time... it will be a long term, life long commitment. Its worth giving up if I can give up feeling like this.
Other than that, I am really looking forward to the summer. I have so many fun adventures planned and I think I am going to participate in a cycling festival and maybe one or two aqua bike races!!! I want to be active and feel the warmth of the sun on my skin. Overall, the last two months have been an improvement to the months before... I am hoping to maintain that at least for a while. I want to breathe in the wilderness air, feel the breeze in my bike ride, splash in the water, climb mountains, camp, and play. You never know when the simple pleasures will become a lot of effort, so I am going to soak it all in a little longer as I wait for the unknown.
Love, kisses, and peace in your journey...
Amanda
P.S. Please excuse any grammatical or spelling errors... I am too tired to edit. This blog shouldn't be work :)
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