Hi Sydney and welcome to the community. I'm sorry to hear about your diagnosis
I am diagnosed with Lymphocytic Colitis which is the other primary form of microscopic colitis. In fact, many researchers believe that LC and CC are one and the same, just at different stages.
Various questions and suggestions:
1. When you say you're experiencing burning, is it burning in your gut? What other symptoms do you have?
2. Budesonide works for some with CC so hopefully it'll begin to work for you soon. What dosage are you on?
3. In my opinion, diet plays a major part in Lymphocytic Colitis and Collagenous Colitis. You can see
my holistic treatment journey here. I'm not in remission yet but I am doing SO MUCH better than I once was.
4. There is a very large overlap between microscopic colitis and gluten allergy and sensitivity. Even if you tested negative, I would suggest trying to cut out gluten for 8 weeks to see if that helps. As for the rest of your diet, it's a big experiment, one that is very much ongoing for me.
5. Have you by chance had your vitamin B12 and vitamin D levels tested? If so, what were they?
We're here for you.
Hi, David.
Thank you so much for replying, and for the warm welcome. I am very sorry that you have LC.
1.)The burning, that I am experiencing is in my rectum. It is always there. It is also very painful, when my G.I. Doc presses on my lower left side. Sometimes, I get cramps. Never can evacuate, completely. Can't form stool.
I hope this is not TMI.
2.) I am taking, 3, 3 MG of Budesonide, each morning. My G.I. Doc was really perturbed with my D.O. for advising me to take Imodium, when this began almost 17 months ago, and also with my MS Specialist for advising me to take Metamucil capsules, in February.
He said it was like putting a band-aide on an open wound.
Ultimately though, when I look back, I should have gone to see my G.I. Doc, when neither the Imodium or Metamucil helped me.
(I've read that low fiber is recommended for microscopic colitis, have you gone to a low fiber diet?)
3.) I agree, diet seems to affect me, very quickly. I am learning some of my "trigger" foods. It's been very trial & error, and with having MS, I don't have a good appetite.
Thank you for the link to the thread about your holistic journey. I pray that soon, you will be in complete remission.
4.) I had biopsies for Celiac disease in '08, they were negative. And my G.I. Doc recently ran the blood test for Celiac, and it was negative. But, I agree, I think going gluten-free for 8 weeks is definitely worth trying.
5.) Yes, my MS Specialist checks my Vit. B12 and Vit. D, on a regular basis. Vit. B12, has always been good, but Vit. D was very low, so I was on a high dose of Vit. D for quite some time. Many MSer's have low Vit. D. I don't have my levels on hand.
I'm so glad I found this forum.
But, it is disheartening to read that so many people are suffering.
Thank you for being here.
Sydney