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06/08/2011 09:01 AM

lymphocytic colitis(page 2)

cruiseaddict
Posts: 9
New Member

Want2bewell..

Did the Doctor ever give you Endocort...I truly believe it is a miracle...I know when I have to wean off of it for a time, things will go back to the way they were, but right now I am enjoying it...I no longer need to know where the bathrooms are...it has been once a day for the bathroom and twice if I insist on eating any of the trigger foods, such as oreos or tomatos...both of which I love...oh well.

This drug is expensive as well, it is close to $1000.00 for a thirty day supply. I have read reports from users saying it made them sick, lightheaded and alot of other side effects, but it seems they were taking 3 pills in the morning. I take one in the AM and one at dinner time. If you haven't tried it, it may be worth asking the doc.

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06/08/2011 11:28 AM
violett
violett  
Posts: 3376
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I don't take anything for IBS except Align Probiotic (OTC) and I avoid my trigger foods. The Probiotic is what cured me. I took it for 3 months before I noticed much improvement and 6 months before it was completely gone (other than if I ate the wrong foods). I'm still learning new foods that I can't tolerate. I suppose I will always come across things I didn't know would bother me.

07/07/2011 03:36 AM
Pixie1960
Pixie1960  
Posts: 2205
Group Leader
I'm an Advocate

Hello friends,

I was diagnoses with IBS in May 2010 and they haven't found a medication that helps me yet. I've cut out certain foods and drinks and that's a constant job...on going...learning about what causes a 'flare up' . One day you can eat such & such and the next week you can't.

Nothing has worked for me and the gastrointestinal doctor was going to do expiatory surgery to see if there was anything there but the lung doctor said absolutely not....not right now so.

So I have to continue with the liquid phegan and loratab until I can save my lungs and then MAYBE I'll get some relief from this CRAP...literally speaking.

Take care.

Hugs,

Kathleen


07/23/2011 05:32 PM
rtg33905

LOL-get rid of this crap?Cute, put smile on my face-

I was told to try lomotril -is OTC and also gotta ask dr for such

It's been over 3 weeks, I've been putting off Dr ordered needed lab tests till this is over but it appears will do such and find out what this is, runs, first time I have seen such word without seeing diarrhea-was getting worried such was cancer of some kind, instead


07/24/2011 01:43 PM
rtg33905

4:42pm, almost 24 hours later, no posts?? I was told my symptoms sound possibly like my gallbladder, which I sure hope such is not-

07/25/2011 04:19 PM
Pixie1960
Pixie1960  
Posts: 2205
Group Leader
I'm an Advocate

Hello MarlaRocks,

Unfortunately, like with other chronic diseases it affects everyone differently. It's also a trial and error thing. What works for 1 person may not work on someone else. That includes what you eat, the medication you take. Everything.

I have a severe case of IBS-M and the only things that work for me is liquid fenigan (an anti-nausea medication) which I take 20-30 minutes before eating a small meal or taking my oral medications. This helps me at least to keep some of my food/drink/medication down. And talk about pain...besides drawing up into knots at times my colon drifts from time to time to place to pain. I get liquid loratab for that or I'd be in the nut house by now.

My gastro doctor is so concerned that he was going to do exploratory surgery last month but as it is, I am currently fighting the early stages of lung cancer. NEVER smoked a day in my life.

I wish I knew what to say to help you out but, as you can see, we're kinda in the same boat.

Take care. I wish you all the best. If I learn something new or whatever I'll let you know. Hang in there!

Hugs,

Kathleen


08/04/2011 01:19 PM
cabarker1
 
Posts: 36
Member

Hi,

For 10 years, I have had constant watery stools and burning pain in my intestines. And all the doctors that I saw for it said I had IBS-D.. A few weeks ago I went into the Doctor I see now and told her that I did not think I had IBS. That the symptoms did not fit. One I never had constapation, or a normal bowel movment in ten years, and that I did not have cramping pain. I agreed to have a colonoscopy and found out that I have both Collagenous and lymphocytic colitis, hard to believe that a person can have both but when researching it I found out that its rare but can happen.

Think god that they are both treated the same way. I am on enough drugs already. After reading a post on here about this I now know why my perscription has to be approved through insurance first. My doctor has perscribed endocort, I hope they get the insurance approval fast so I can start taking it. The foods that the doctor has told me to stay away from are, fried foods and meats that are fatty, stay away from fiber and caffene that last one I am afraid to say I cant stay away from, have to have my coffee. The question I have about the endocort is how long can you take it. MY doctor perscribed large dose to start and then tapper down to losest dose and she said that lower dose will help keep it maintained. But she didnt say how long after tappering down I can stay on it. Does anyone know?


08/04/2011 02:06 PM
violett
violett  
Posts: 3376
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I'm an Advocate

I'm sorry I don't know anything about that drug. But I'm certainly happy for you that you finally found out what the trouble is. Now you can focus on getting well.

hugs, violett


08/04/2011 09:32 PM
Pixie1960
Pixie1960  
Posts: 2205
Group Leader
I'm an Advocate

Hello Ladies,

Collagenous colitis and lymphocytic colitis are the same collectively referred to as Microscopic Colitis. It's an inflammatory DISEASE and like other chronic illnesses such as IBS it affects everyone differently.

And when it comes to diet, drinks efforts etc It's a trial and error kinda thing ya know? In other words hurry up and wait for some relief!Sad

Hang in there!

Hugs,

Kathleen


08/31/2011 09:44 AM
cruiseaddict
Posts: 9
New Member

I just wanted to come back and report my continued success with Endocort for my collagenous colitis...I go back to the doctor on 9/7 so I will come back and report what the plan is after that...While this is an extremely expensive drug, I have a good prescription plan and am very grateful that it has helped me to the point where I am normal...I am wondering if every doctor who preforms a colonscopy does biopsies even thought the colon appears normal as mine did...it is an absolute must for anyone having a problem..
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