07-01-2012, 12:23 PM   #1
New Member
Join Date: Jun 2012
Location: Bechtelsville, Pennsylvania
Recently diagnosed

Hi everyone, my name is Danielle and I am 28 and was recently diagnosed with lymphocytic colitis. My main symptom is severe abdominal pain, sometimes it turns into frequent trips to the bathroom due to D. It has been going on for a couple of years I suspect but until about September of 2011 it got really bad where I was in pain everyday. I am not really happy with my GI and have been considering seeking out another opinion. She seems to think it will just go away on its on and only has given me hyoscyamine, which has stopped helping with the pain and I have told her this, she just increased the dosage.
Does anyone have any suggestions on how to decrease the pain? I have gone with out caffeine and lactose but it did not make a difference. I really feel like it has taken control of my life and now that I know what is wrong with me I want to get my life back.
07-01-2012, 12:35 PM   #2
Senior Member
Keepingfaith's Avatar
Join Date: May 2012
Location: Alabama
Welcome to the forum!

I'm sorry you just got diagnosed with LC but there are a fair number of people on the forum who have LC & I believe a few have had it in addition to Crohn's.

Your GI is correct though, Lymphocytic colitis can go away on it's own and it does not have a clear cut treatment. It isn't really classified as an IBD(yet) to my knowledge. Steroids or a meslamine are sometimes prescribed for an indefinite ammount of time. Even that treatment doesn't always work so it's kind of a 'wait and see' 'trial & error' type deal.

I'm sure David will pop on by soon and he knows a lot more about LC than me.

Welcome to the forum & feel free to ask MANY questions! I hope you get better, especially since you've been putting up with it for a long time.
Current medication:
Steroid suppositories
Canasa suppositories

Diet: Feeding via J-tube

DX: Crohn's Disease, Juvenile Rheumatoid Arthritis, Endometriosis, Gastroparesis

Previous Medications:
Remicade- Drug Induced Lupus, Humira, Prednisone,
Entocort, 6MP, Methorexate, Amitriptyline, Asacol, Flagyl, Apriso, Cimzia, Cipro, Sulfasalazine etc. You name it, I've tried it.
07-01-2012, 12:50 PM   #3
New Member
Join Date: Jun 2012
Location: Bechtelsville, Pennsylvania
Thanks. I actually have been reading David's posts, which is the reason I signed up on this website.
everything I have been reading has classified it as a an IBD and that yes it can go away on it's on but being as I have been dealing with it for so long I am thinking I will not get so lucky. I am tired of being in pain all the time and never knowing when it will strike. I think i may have read on one of David's post about yoga and fish oil? i think it was. I will have to see if i can find any classes near by and see if that will help. She did talk about putting me on a medication to treat the colitis but has yet to do so.
07-01-2012, 12:50 PM   #4
David's Avatar
Join Date: Feb 2006
Location: Naples, Florida
Hiya Moonhaven and welcome to the community

I, too am diagnosed with Lymphocytic Colitis, I feel your pain and frustration

Keepingfaith is correct, sometimes Lymphocytic Colitis will go away on its own (according to what they say on the internet) but I have yet to experience that and have yet to talk to anyone who said they've been in remission for a long period of time. But maybe those people disappear because they're feeling so good

Lymphocytic Colitis is a subtype of microscopic colitis and it IS a type of IBD (Inflammatory Bowel Disease). We have created a subforum dedicated to microscopic colitis here that is full of a lot of information.

A prescription of just Hyoscyamine tells me your GI isn't well versed in Lymphocytic Colitis. If you're not comfortable with them and the level of care you're receiving, I would find a GI who is well versed in LC. The most common prescription given for LC is Entocort and it seems to work pretty well for many. I personally haven't taken it and won't get into that story

I will say I am doing MUCH better than I once was. I feel a lot of that is due to a diet that is much like the paleo diet. The forum I linked you to has lots of additional information as well.

Again, welcome I'm glad you found your way here.
It's good to be back
07-01-2012, 08:31 PM   #5
New Member
Join Date: Jun 2012
Location: Bechtelsville, Pennsylvania
Thank you for your reply David! Like I said reading your story is the reason I signed up to this site. I am always looking for better ways to deal with this.
I will look into this diet that you have suggested!
07-01-2012, 09:51 PM   #6
Senior Member
EthanPSU's Avatar
Join Date: Jul 2010
Location: Pennsylvania

My Support Groups:
Hey moon, First off your GI seems kinda iffy, they shouldn't really think something will just "go away" on its own, and really shouldn't just keep upping the dosage if it's not.

But welcome to the forums, this is a great place to come for support and ask any questions you have. Anything crohn's related goes here, don't be afraid of the gross stuff, were all use to it lol
07-01-2012, 10:55 PM   #7
lisa in lj
Join Date: Jun 2012
Location: Lake Jackson, Texas

My Support Groups:
I was told that the symptoms will get better with treatment and diet, but the disease is forever.
07-02-2012, 11:28 AM   #8
New Member
Join Date: Jun 2012
Location: Bechtelsville, Pennsylvania
Hi Ethan thanks for responding! I meant that she increased the amount of pills to take not the a higher miligram. My bad!
So ill never be rid of lc? How depressing.

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