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Crohn's Disease Forum » General IBD Discussion » Microscopic Colitis » Newly Diagnosed-Collagenous Colitis



01-01-2013, 12:26 PM   #1
SweetSydney
 
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Newly Diagnosed-Lymphocytic Colitis

Hi.

I have MS, Hashimoto's thyroid disease, and after suffering with pasty stool, and diarrhea, I was diagnosed with microscopic colitis: Lymphocytic Colitis.

At first, I thought it was CC.

I began Budesonide, 3 weeks ago, yesterday.

I was wondering, if anyone else with this form of colitis, and has taken Budesonide can tell me how long before you saw any improvement in your symptoms.

I am constantly burning. Nothing eases that pain.

Thank you, in advance.

Sydney

Last edited by SweetSydney; 04-05-2013 at 04:50 PM.
01-01-2013, 04:50 PM   #2
Farmwife
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So sorry about your pain. I have no advice to give .
David might be able to offer more advice on this.
Just wanted to offer some support.
I hope the meds start working soon.

Hugs from Farmwife and little farmgirl
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01-01-2013, 04:56 PM   #3
SweetSydney
 
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So sorry about your pain. I have no advice to give .
David might be able to offer more advice on this.
Just wanted to offer some support.
I hope the meds start working soon.

Hugs from Farmwife and little farmgirl
Thank you for replying, and your comforting words.
I do appreciate your support.
In all honesty, the LC is worse than the MS.
Thank you-I hope the meds start working soon, too. I'm losing weight again, and I had managed to get up from 72#s to 84.....

Sydney

Last edited by SweetSydney; 04-05-2013 at 04:52 PM.
01-02-2013, 09:36 AM   #4
David
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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.
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01-02-2013, 10:53 AM   #5
SweetSydney
 
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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
01-02-2013, 01:48 PM   #6
nitty
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Hi, I also have disease just in the colon, which I believe is the case with your CC (please correct me if I'm wrong).
Because of the location of disease I was told that budesonide would not be suitable (not effective enough in that area) and that prednisolone was the best steroid option.
I took the pred and, despite the side effects, it worked fabulously to get my symptoms under control - bleeding, pain and diarrhoea all improved drastically.

While the pred was tapering down I started on Azathioprine and haven't looked back since!
01-02-2013, 02:49 PM   #7
SweetSydney
 
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Hi, I also have disease just in the colon, which I believe is the case with your CC (please correct me if I'm wrong).
Because of the location of disease I was told that budesonide would not be suitable (not effective enough in that area) and that prednisolone was the best steroid option.
I took the pred and, despite the side effects, it worked fabulously to get my symptoms under control - bleeding, pain and diarrhoea all improved drastically.

While the pred was tapering down I started on Azathioprine and haven't looked back since!
Hi, nitty.

I am so sorry that you also have CC.

Everything I have read on the 'Net said that Busedonide is the best treatment, but I started my 3rd week on it, on Monday, and I have not seen any improvement.

I am supposed to call my G.I. Doc, when I am in my 5th week, and if the Busedonide has not resolved things for me, I am going to discuss prednisolone with him.

It is very encouraging to learn that someone is finding relief!

I wonder, if he didn't prescribe prednisolone because of my MS.

Thank you so much for replying.

Sydney
01-02-2013, 04:39 PM   #8
SweetSydney
 
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Hi, I also have disease just in the colon, which I believe is the case with your CC (please correct me if I'm wrong).
Because of the location of disease I was told that budesonide would not be suitable (not effective enough in that area) and that prednisolone was the best steroid option.
I took the pred and, despite the side effects, it worked fabulously to get my symptoms under control - bleeding, pain and diarrhoea all improved drastically.

While the pred was tapering down I started on Azathioprine and haven't looked back since!
Nitty,

How long did you have CC, before you were diagnosed?

I have been searching the 'Net, and Busesonide is prescribed for chronic LC, which was my G.I. Doc's dx.

Sydney

Last edited by SweetSydney; 04-05-2013 at 04:53 PM.
01-02-2013, 05:31 PM   #9
nitty
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My official diagnosis is Crohn's colitis, so I don't know if that is exactly the same as yours.
I started with rectal bleeding in summer 2011, saw my GP early that September and by mid November I had had a colonoscopy and the diagnosis was confirmed by that (a big thumbs up for the NHS from me!). Before the conoscopy it was initially thought that I had UC as my symptoms were closer to that, but the patches of inflammation were found in three clearly separated places in the each part of the colon so Crohn's was the result. As far as I am aware there is no small bowel disease.

I spent about 7 months trying different forms of mesalazine, but by summer 2012 I was sliding into what became a pretty nasty flare. I had been reluctant to try steroids, but I'm so glad I did. Within 2 days of starting prednisolone (40mg) I saw a great improvement. I did have side effects - palpitations and generally feeling a bit spaced out - but it was well worth it. Now azathioprine seems to be keeping things under control for now.

It was a friend of mine who is a GI specialist who told me that pred would be far more effective than budesonide. However, I don't have any other significant health issues, so I can't comment on your own doctor's choice of treatment, but I would have thought that if the budesonide was going to help then you would have seen an improvement by now.
There could also be a difference between the steroid choice for chronic v acute colitis, and you may need a more systemic drug (pred) to knock the flare on the head, perhaps reverting to budesonide, which is a more localised release, for longer term maintainance.

If there is no improvement by the time you see your doctor then I reckon it'll be worth asking him for an alternative.
01-02-2013, 06:01 PM   #10
nitty
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Hello again!

I've just been looking into it and found that crohn's colitis and collagenous colitis are NOT the same, in fact they're pretty different, so I'm afraid I've probably not been much help!

I just hope you manage to get it sorted and feel better soon.

Best wishes,
Nitty
01-02-2013, 06:25 PM   #11
SweetSydney
 
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Hello again!

I've just been looking into it and found that crohn's colitis and collagenous colitis are NOT the same, in fact they're pretty different, so I'm afraid I've probably not been much help!

I just hope you manage to get it sorted and feel better soon.

Best wishes,
Nitty
Hi, (again) Nitty.

Oh, I guess I was confused, too. I thought you had collagenous colitis.

But still, I really appreciate the fact that you made an effort to help me.

Thank you-I hope the medication clears it up, because it's worse than my MS symptoms.

All My Best,
Sydney
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