I am on a rollercoaster since July- last test next week
Hello! I am new here and I started this journey of finding a disgnosis since July 4th- major flare. I also have seconday progressice MS for almost 30 years. So far lots of inflammation in lab tests, not IBS, not Celiac (after negative endoscopy and colonoscopy. I am getting small bowel CT next week for Crohn's.
I love how they say to keep on a high fiber diet- but that causes flares (along with other things per FODMAP diet) - and then no fiber during flares.
It is a juggling act! I am going away for a week in January and I am petrified to eat. I just want a diagnosis but I am afraid that I will not get one.
I am glad I found this group for safe eating tips. and symptom management.
I have also found some of the symptoms, like fatigue. mimic MS. A big percentage of MS patients have a form of IBD since both have an inflammatory component,
--Kim
Sorry you are going through all of this. Will you be getting a colonoscopy with biopsy anytime? That is how I was diagnosed with Crohn's. I'm glad you found this group too. Here to offer support always. I hope today is a better day with minimal symptoms. Best, Elizabeth (team member)
Hello- yes, I just had that done. Normal. So now getting CT scan of small bowel with contrast next Friday. I need to get an answer 😩
--KimOh I see. Well I wish you the best of luck. You can also ask your doctor about a Pill Cam test. It shows the small intestine in detail. More detail than CT scan I believe. Maybe something to consider. Best, Elizabeth (team member)
Oh man,
, it does sound like you've been on a rollercoaster since July. If I'm understanding you correctly, it sounds like you've been having symptoms since July but have yet to get a diagnosis? I really hope that your next procedure/appointment can help you get some answers! A lot of our community members here have also experienced the long diagnosis process, you're not alone! I also want to share a link to some information on the diagnosis of inflammatory bowel diseases: https://inflammatoryboweldisease.net/diagnostic-tests-and-procedures. We're glad that you've found our community here, and please keep us posted with how your CT scan goes. Also, as you mention living with MS, I just wanted to make sure you're aware of our sister site, https://multiplesclerosis.net/. It offers the same type of community, information, and support as we do here, but for those impacted by or living with MS. We' d love to have you join there as well, if you're interested.
Wishing you a gentle day! -- Warmly, Christine (Team Member)Thank you! I actually do go to that MS site- I didn't know you were related. It is great that we have these resources so we can be our own advocates 😀
oh that's great! I'm so glad you're already aware. Yes, our parent company (Health Union) has quite a few communities for various chronic conditions. Thank you for being a part of our communities. Members like you are what help make the communities so helpful and valuable. How are you doing currently? Did you complete the CT scan or is that still coming up? We'll be thinking of you, and please keep us posted. Sending you gentle hugs! -- Warmly, Christine (Team Member)
