Share Facebook



07-16-2011, 10:29 AM   #1
Daveinm
 
Join Date: Jul 2011
Location: Isle of Wight, United Kingdom
lymphocytic colitis

Hi, Ok a little about me.
For over a year I was advised by my GP that everyone has this urgency to go to the toilet as they get older, and that in all probability it was "all in my mind" as a stool test did not detect blood.
Eventually I was in so much pain i could not work and in desperation changed my GP who immediately ordered a number of tests and within a few weeks I was diagnosed with lymphocytic colitis. The GP and hospital support has been really good but each consultant I have seen says they have never dealt with lymphocytic colitis and treat me for UC, which I am sure is right anyway.
However, its 2 years now and still little pain relief, although the number of times I go to the loo has reduced (but not the urgency)
I have recently had my medication changed due to financial reasons, basically it was expensive to prescribe.
I has been suggested though various publications that alternative medication may be an option, such as vsl3, but not tried this yet. I have changed my diet, but there appear to be no real consistency as one day something seems ok, when another day it will be a disaster.
I just wondered if there were any other lymphocytic colitis suffers on this site, and sometimes I really do need to speak to someone that understands.
07-16-2011, 11:24 AM   #2
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
Location: Naples, Florida
Hi Dave and welcome to the forum. I too, have Crohnic Lymphocytic Colitis and have started a lymphocytic colitis support group here. I've admittedly been slow to update the first post, my apologies there.

But join us in the thread. Let us know what meds you're on, your current diet, etc.

Again, welcome!
07-17-2011, 10:28 AM   #3
xJillx
Your Story Forum Monitor
 
xJillx's Avatar
 
Join Date: Jan 2011
Location: Pennsylvania

My Support Groups:
Hi and welcome! You've come to the right place. Regardless of the type of IBD you have, we all experience the same physically and emotionally toll. I think you'll find it helpful to speak with others who are in the same boat with you.
__________________
Jill

Diagnosed with Crohn's Disease - July 2010
Diagnosis of Crohn's Disease Retracted - October 2011

I am still sick and so confused...
03-04-2013, 11:38 AM   #4
Daveinm
 
Join Date: Jul 2011
Location: Isle of Wight, United Kingdom
Hi all.

Time flies. However no real change with the LC

I have tried a number of additional medications through my GP, and eventually got prescribed VSL3 (see my earlier post).

tried it for a while , and was not sure how effective it was until I stopped taking it when the symptoms returned with a vengeance. So back on VSL3 but this has never improved the pain relief, just the bowel movements.

I have recently been advised of another medication Budesonide. Does anyone have any experience of this please.

On a bit of a flare up so feeling sorry for myself.


Thank you


Dave
03-04-2013, 02:02 PM   #5
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
Location: Naples, Florida
Hi Dave,

I'm sorry to hear the LC isn't any better

Budesonide is also known as Entocort and people with Lymphocytic Colitis often do respond well to it. It's not a medication you want to stay on long term though as it is a corticosteroid.

Have you tried any dietary changes?
03-04-2013, 02:21 PM   #6
Daveinm
 
Join Date: Jul 2011
Location: Isle of Wight, United Kingdom
Hi David. thank you for such a quick response. I have tried a number of diets, but to be honest its been a case that sometimes a certain food is ok, and another day its a real issue. I did purchase a book for people with Crohns as a friend has managed to manage his Crohn's well by diet alone.

However on the chapter for LC it suggested that diet does not affect LC.
Its difficult to accept this as I know certain foods will make me unwell.

I take medication but get so tired with the ache, rather than pain, in the stomach,

I am currently taking :
MEBEVERINE MR 200mg caps One tablet twice a day I think this is for pain relief.
OCTASA MR tabs 800gm two tablets three times a day.
VSL#3 probiotic 4.4g powder sachets 2 sachets per day.

Would welcome any diet advice

Thank you

Dave
03-04-2013, 08:35 PM   #7
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
Location: Naples, Florida
That book that says diet doesn't affect LC? Burn it and tell the author they're an idiot.

I'm in remission thanks to diet and lifestyle changes.
09-04-2013, 09:16 AM   #8
Daveinm
 
Join Date: Jul 2011
Location: Isle of Wight, United Kingdom
Times has moved on with no improvement of the
Lymphocytic Colitis . I was prescribed Budesonide for a short while but suffered bad headaches which my GP said is a fairly common side effect.

When I had my last Colonoscopy nothing was detected until the biopsy's were looked at and Lymphocytic Colitis diagnosed.

I had another Colonscopy last week and the results state:

Rectum : Colitis - non - specific (mild, patchy)
this statement also applied to :
Sigmoid colon
Decending colon
Splenic colon
Transverse colon
Hepatic Flexure
Ascending colon
Caecum

Various biopsies taken but for each area.

I'm now confused as I understood that Lymphocytic Colitis cannot be seen during a colonoscopy but only under a microscope.

Does this mean something has possibly changed ?

Thank you.
David
02-02-2014, 03:33 PM   #9
Daveinm
 
Join Date: Jul 2011
Location: Isle of Wight, United Kingdom
Although I had my last Colonoscopy months ago, I have now been seen by my Consultant. I was advised that the biopsies showed no evidence of LC. although there was evidence of Colitis as detailed in my previous post.

I no longer take Octasa but still take MEBEVERINE but with 2 weeks on and 2 weeks off.

So how is it? Difficult to say.
The pain/ache is still there.
The urgency to go to the loo is still there but less urgent
I now have firmer stools although this is not all the time.

I have tried to exercise where possible and have followed a diet that seems to work for me. I don't think I am cured, in fact I am fairly certain that after 5 years of LC I am in some form of remission.

My grateful thanks to David and this site for being there when I really needed some guidance and support


12-21-2014, 05:17 PM   #10
Audie
 
Join Date: Nov 2014
Location: Grand Rapids, Michigan

My Support Groups:
I am new to this condition since October 2014.

Very fearful about adding vegis/fruits of any kind that aren't cooked and pur'eed. My diet is so boring but it does the trick, but probably limits my calorie intake too much (it's tough for me to eat for other medical reasons). I NEED to put on weight, but am nauseous.

Breakfast:
2 eggs fixed a in a variety of ways
other protein of some kind

Snacks

Grape juice/apple cider jello 50/50 w H2O
Perfect Protein with Coconut milk and banana blended
Homemade pear/apple sauce

Lunch
Homemade Organic GF chicken soup seasoned with onions, celery (Eventually stained and removed) carrots (of which I blend then add back)

Just started adding a little cheese
Snyder's GF pretzels and Udi's GF bagel or bread (occasionally) (Nutritionist does not want me to have any grains - that seems impossible)


Dinner:
Baked chicken thighs, seasoned with sea salt and pepper, sweet potato, squashes of different varieties

You are the only person I have asked specifically this question:

When you started to introduce whole, cooked vegis, did your system react well? Did you flare up? I am so fearful of that.

I currently take the following supplements: (My last flare-up was 16 days ago, and I attribute that to taking a tiny bit of Get Regular tea due to constipation + it's been a very emotional time with other health issues) As soon as I started the below probiotic, and continued on my diet regimen I got better.

1/Reuteri Probiotic (I think this has been a real life-saver for me - Google it)
Glutathione IV anti-oxident
NAcetyl (Supports Glutathione)
Phosphatidylcholine (IV - Whole Body Cell support)
1/B-Vit. Complex w/C and Zinc
1/ SCD Multi Vit.
400IU Vit E
2500IU Vit D
I Betaine Enzyme (Plan on adding Lipase soon)
5-6 Pepto Bismol
1.5 Low-Dose Naltrexone (Will bump up to 3.0 in 7 days)

I have never been tested for food sensitivities and after kidney stone surgery and healing from that in Jan, I am going to do that.

I am considering adding turmeric as a supplement and any info/advice on introducing vegetables into my diet would be greatly appreciated.

Thanks-

Audie
04-15-2015, 03:17 PM   #11
Kimelizabeth
 
Join Date: Feb 2015
Location: Pensacola, Florida
Hi Audie,
Was wondering how you have been making out since your last post.
Kim
Reply

Thread Tools


All times are GMT -5. The time now is 02:22 AM.
Copyright 2006-2017 Crohnsforum.com