Hi Hans,
I found myself nodding in agreement as I read your story. Sounds familiar. I'm going through bad vision, flaking forehead, dry eyes, and low grade headaches now. I appreciate a GI with a sense of humor. Your dog is adorable. Welcome to the board and I am sure you'll find a host of good information to help you get back your life. No one understands how trying LC can be like us here. Things got better for me with the right information and this support.
Cory
My story so far
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Hello Hans and welcome to the group from New Hampshire...another cold spot. Your story does have a lot of similarities to mine and other members on this site.
In summary my experiences have been:
- September 2009 vitamin D test comes back extremely low (6) GI symptoms starting
- Diagnosed in April of 2010 with collagenous colitis and Crohns jejunum.
- Was on Entocort for about 7 months which did help settle things down
- I started Imuran (azathioprine) an immunosuppressant to treat the CC and the Crohns, it works well.
- By May 2010 I was committed to a GF, SF and DF diet and was for the first time learning how to cook
- In May of 2011 I ended up in surgery for the Crohns having a piece of the jejunum removed
- In December of 2011 I ended up having a piece of my large intestine removed due to chronic diverticulitis.
- This past summer I was Dx'd with spinal stenosis at L2 - L5 (3 herniated discs with spinal cord effacement ), Bi-lateral facet joint hypertrophy (L1 - L5), osteoarthritis, enlarged ligaments, Osteoporosis (Z score -2.9), Anklyosing Spondylitis (autoimmune disease of the bones and cartilage) and the disc at C5-C6 is also bulging. Good heavens my back is a real mess.
Given your other note about collagen and MC (CC) and the recent issues with my back, your question poses an interesting premise. Can the same mechanism(s) involved in CC affect other collagenous membranes or structures? As you mentioned me having 4 discs rupture or bulge like this is very unusual when there has been no physical trauma or other significant event.
As far as your English speaking capabilities, they're better than mine
Many of the symptoms such as blurred vision, double speak or brain fog (momentary confusion) and fatigue seem to be quite normal with MC and can also be a side effect of the Entocort.
You certainly have received a lot of great information and I will echo strongly how important it is to figure out all of your dietary intolerances which usually include at least gluten which your already avoiding, soy and often dairy and potentially other food items as well. I believe Signet Labs now has operations in Europe and using a technique called Mediator Release Testing, they with one blood draw test for about 150 foods and simple pharmaceutical items to see if you react to them. Knowing what foods to avoid is a great help in achieving and maintaining remission of MC.
Link to Signet Labs European operations news release:
http://bmfsports.proboards.com/index.cg ... hread=1030
Here is a link to my MRT results, I believe the tests they run now include quite a few more items.
http://www.perskyfarms.com/phpBB2/viewt ... 14&start=0
I noticed your great looking companion on your photo, here are a few photo of my 4 legged friend Nestlé, often called Nurse Nestlé given her uncanny ability to make me feel better on those not so good days.
Thanks for posting Hans, it's great to meet you.
In summary my experiences have been:
- September 2009 vitamin D test comes back extremely low (6) GI symptoms starting
- Diagnosed in April of 2010 with collagenous colitis and Crohns jejunum.
- Was on Entocort for about 7 months which did help settle things down
- I started Imuran (azathioprine) an immunosuppressant to treat the CC and the Crohns, it works well.
- By May 2010 I was committed to a GF, SF and DF diet and was for the first time learning how to cook
- In May of 2011 I ended up in surgery for the Crohns having a piece of the jejunum removed
- In December of 2011 I ended up having a piece of my large intestine removed due to chronic diverticulitis.
- This past summer I was Dx'd with spinal stenosis at L2 - L5 (3 herniated discs with spinal cord effacement ), Bi-lateral facet joint hypertrophy (L1 - L5), osteoarthritis, enlarged ligaments, Osteoporosis (Z score -2.9), Anklyosing Spondylitis (autoimmune disease of the bones and cartilage) and the disc at C5-C6 is also bulging. Good heavens my back is a real mess.
Given your other note about collagen and MC (CC) and the recent issues with my back, your question poses an interesting premise. Can the same mechanism(s) involved in CC affect other collagenous membranes or structures? As you mentioned me having 4 discs rupture or bulge like this is very unusual when there has been no physical trauma or other significant event.
As far as your English speaking capabilities, they're better than mine
Many of the symptoms such as blurred vision, double speak or brain fog (momentary confusion) and fatigue seem to be quite normal with MC and can also be a side effect of the Entocort.
You certainly have received a lot of great information and I will echo strongly how important it is to figure out all of your dietary intolerances which usually include at least gluten which your already avoiding, soy and often dairy and potentially other food items as well. I believe Signet Labs now has operations in Europe and using a technique called Mediator Release Testing, they with one blood draw test for about 150 foods and simple pharmaceutical items to see if you react to them. Knowing what foods to avoid is a great help in achieving and maintaining remission of MC.
Link to Signet Labs European operations news release:
http://bmfsports.proboards.com/index.cg ... hread=1030
Here is a link to my MRT results, I believe the tests they run now include quite a few more items.
http://www.perskyfarms.com/phpBB2/viewt ... 14&start=0
I noticed your great looking companion on your photo, here are a few photo of my 4 legged friend Nestlé, often called Nurse Nestlé given her uncanny ability to make me feel better on those not so good days.
Thanks for posting Hans, it's great to meet you.
Joe