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Jean, I know what you mean and I almost don't care how we got there, as long as I am better.
I think because my LC was C prominent it didn't fit her experience of what people with LC go through, although she never questioned the diagnosis and the standard treatments for LC worked for me. I did well over the summer (this past summer) when I was off of work a few weeks but when work started back up, back came the pattern which I'm sure she felt was stress related. I suspect that's what she linked to IBS. I can see that it was stress influenced-- but I have been a psychologist for 32 years and have learned how to manage my stress-- so I felt there could be other factors at play. We agreed that inconsistent motility was the feature that needed to be attacked.
You know, I would go to my appts with my log, my Enterolab and MRT results and tell her what I was currently working on in an effort to manage my LC, what I learned and my next approach. We have had great discussions and always fill every minute of my 30 minute appt. Maybe other LC patients don't do that..... so again, maybe my case looked atypical. (?) She may be used to people getting on Entocort but not being successful off of it (If they aren't making diet changes they would regress) and going through cycles of off and on Entocort. My GI is a believer that diet IS a factor in LC/MC so she never doubted my approach. She encouraged me to keep going with the diet changes.
At any rate I think it's obviously a motility issue, I can't seem to influence it, I would think it's part of LC and an indication that I'm not completely healed or in remission, but I'm happy taking the 10mg amitriptyline for now. It' s helping my sleep and my gut both.
thanks again, everyone.
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Carol wrote:which I'm sure she felt was stress related
When the creators of the concept of "IBS" started looking around for quasi-legitimate ways to justify the "diagnosis" of IBS, they fixated on stress, because that seemed to be a prominent feature (and it didn't seem to be already assigned to some other GI disease), so they assigned it the status of an official "cause" of "IBS" — it never dawned on them that stress is also associated not only with all IBDs, but with all autoimmune issues as well. Once they set the rules of the game, though, in medicine, it almost takes an act of congress to change them, especially when all concerned desperately want such an attribute to be true, (in order to help create the illusion of a legitimate disease).
I'm pretty sure that if a survey were sent around to all GI specialists, and one of the questions was "What gastrointestinal disease is caused by stress?", probably 90% or better (of those who responded to the survey) would answer "IBS".
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Wonderful news! I'm glad you're on elavil....it saved me as I reported recently. I've been on it for a month now and I absolutely thankful that it exists. I have been doing wonderful since on it, also 10mg. I take it at 6-7 so that I don't stay sleepy the following morning.
I started eating, I gained weight, and I lost all of the debilitating nausea.
I'm still on one entecort a day, can't seem to shake that one off....and still taking mesalamine...but working on eventually getting rid of those one day soon hopefully.
I identified on how your life changed for the better. Elavil did that to me too within 24 hours of taking it.
take care,
Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
That's great news Cathy! I take Amitriptyline as well....been on it for 20 years. I took it initially to get rid of chronic headaches and it worked immediately but it also worked on my anxiety thus calming my bowels down. It's my wonder drug. But since I've been on it for that long, the current dosage no longer works that well for me (I take 25 mg/night). It's a great drug but it's very hard to get off of. Plus it increases your appetite. Oh but to have a calm colon, who cares about that! lol! I'm glad it's working so well for you. I believe Monique just started taking it as well and had positive results. I'm stuck with the drug (hoping it didn't trigger my MC) for life it looks to be.
And, you'll sleep well!
Take care,
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
Hubby had just lost his job when I was diagnosed with "IBS"... but I had it while he still had a job! I was told it was stress related to his losing his job.. and I needed to see a psychiatrist before the GI doc would see me again... Pox on that. He was the second GI doc of many...
From day one family doc told me IBS means I don't know...LOL
Congrats on finding something that works for YOU.. that is what we all strive for...
grannyh
I've been on 25 mg of amitriptyline for about 2 months now and it has done wonders for me! I am still having the bowel issues but I'm no longer in so much pain, which helps me think about it less. I used to spend so much of my day thinking about what was happening in my stomach but I don't have to do that now! It hasn't fixed everything for me, but it's worth it just for that in my opinion! I'm glad to see it is helping you and a few others as well!
I find this interesting because I have been an IBS sufferer for 20 years and just recently diagnosed with LC where entocort alone is not putting me into remission. I have had food intolerance all my life but nothing to this extent. I literally cannot eat anything. I am thinking maybe Elavil might be my answer if not the anti histamine route. But here in Canada we cannot get the clariton redi tabs. But heading to allergist tomorrow and maybe he can recommend another type for me or prescription form .
Babs
Canada
Feb 2013 diagnosed Lymphocytic colitis
SCD diet since March 2013
Mezavant April 30 to present still no success
entocort from feb 1 to 28 no success
Carol,
Thanks for sharing the info. I too am wondering about "stress management" and where it comes into play with my CC. I am not sure if some of my days would be called "aggressive bowel days" but perhaps that is a good name for it because I am pretty weak after my morning "routine".
I am trying to really change some things in my life. For a few years I have met a group of people on Friday night for dinner. I have not been going and people are asking when I can rejoin the group and socialize more again. So much of my socialization centers around dining out that it is really stressing me out. My friends are wonderful but I think they feel I am isolating. Right now all I can manage is work and my daily 2 mile walk.
I am really trying to cut down on the Endocort and I am alternating between one and two. I have cut gluten, soy, dairy out and it has been over a month. I do feel like my life right now is driven by MC and that alone is stressful. There are things I really want to do like drive to see my granddaughter at the beach for her birthday which I am doing, but hanging over my head is "how tired will I be Monday morning for work?" I know I just have to take it a day at a time. I once had a counselor friend tell me that we all have issues and the trick in life is to not let them in the driver's seat....they belong in the back seat. So, today I am visually instructing my CC to get in the back seat with my other issues so I can have a pleasant drive!!
Have a nice drive through today my friends....and remember to visualize your car with a BACK seat!
Jean
Everything will be ok in the end, if it's not ok, it's not the end.
Sorry to hear entocort is not working for some. I stayed on a full dose for YEARS and the advantage was that it did not make me tired.
Stress has worked the opposite for me... hubby had a blood pressure problem that landed him in the hospital and I went into remission for almost a year.. a year later same thing happened to me... then another remission. Last year hubby had a quad bipass... and here I am a year later in remission again and can eat just about anything in moderation.
To say that we have a disease that there is no one solution for... is an understatement for sure!
grannyh
Hi grannyh so being on entocort for a year straight didn't cause any issues long term? my gi specialist will not allow me to stay on for more than 3 months
Babs
Canada
Feb 2013 diagnosed Lymphocytic colitis
SCD diet since March 2013
Mezavant April 30 to present still no success
entocort from feb 1 to 28 no success
I am almost 70 and was on entocort for about 6 years before i made it through tapering off... tried many times... went back to three a day many times and started over. I figured since I am not of child bearing age.. what the heck.. it was safer than prednisone. My doctor was the only one I could find (and it took several years) who actually had patients with collagenous colitis who were repeat patients and actually having success with entocort and other much more serious drugs that I did not want to take. He KNEW there was NO CURE and every patient had to find their own way. He had no problem with the fact that I talked about how great this website is.. To find a doctor who really knows about this illness.. and has common sense and isn't threatened by patients who use google.. is a miracle:)
When I was first diagnosed entocort had been taken off the market because too many doctors were using it for "IBS".. both constipation and D... problem was it was not meant for patients with constipation and they clogged up and died. I had to be tested by prometheus labs in calif to be allowed to take it when it came back on the market.
grannyh
I am just like grannyh, even age-wise. LOL I've been on Entocort since about 2006 at varying doses. Every time I got off it I had to restart. I get a little itchy on it and get a few tiny white bumps on my hands. My blood work is fine and I don't have osteoporosis so I'm not at all afraid of it. However I know I have fast motility; I'm going to ask my doc if I could try amitriptyline to slow that down.
There were times when I was tapering off entocort that I took lomotil when I wanted to be able to leave the house.. and then would go back to 3 a day (or two.. wherever i was that worked). Lomotil made me sleep a few hours later though.
Carol, thanx for starting this conversation. I too, did not consider myself an anxious person, but after OH surgery to repair my Mitral Valve in 2011, I soon realized I was dealing with PTSD symptoms; could not sleep, nightmares when I did, crying jags, fearful, etc. I ordered a Heart Math program ( similar to Biofeedback ) which focuses on achieving " coherence" rather "incoherence" and I was stunned to see how difficult this was for me. So yes, we can have underlying issues we are not consciously aware of.
It seems it is not a stretch at all to think our gut, our other brain, would be powerfully impacted by the stress we are in. Then add MC, and in my case, the addition of Cdiff, my stress is indeed high.
I have been discouraged to see no relief after 4 months of eating only bone broth, eggs, chicken, & bits of beef.
But reading posts like yours help me " normalize " my experience and offers clues to help me adjust what I am doing....the histamine problem for example. This wasn't on my radar in 08 when I was posting & reading here.
Thanx so much for your transparency!
"It is very difficult to get a man to understand something, when his salary depends upon his not understanding it. "
Upton Sinclair
Once they set the rules of the game, though, in medicine, it almost takes an act of congress to change them, especially when all concerned desperately want such an attribute to be true, (in order to help create the illusion of a legitimate disease). 
