I was diagnosed by my GI about 8 months ago by a biopsy. I had the symptoms for at least a year. Was on Pepto (2) 4 times a day and UCERIS. Never did get 'normal' but was considerably better. I went off UCERIS for 2 weeks and it came back like a storm. Now I'm trying to get under control again. Doc put me on a lactose diet. no real big change. He did a biopsy on to check for celiac and I don't have that. I'm going to try an elimination diet but I have my doubts about that working. Diahrea 8-12 times per day. nasty stuff. I'm already a type 2 diabetic and keep my carbs low anyway. I manage that by diet only. Guess I can eat chicken the rest of my life.
LC - have yet to control
- Thread starter lutz1107
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David
Co-Founder
I was diagnosed with Lymphocytic Colitis in 2010. My heart goes out to you as I know how terrible it can be.
While I haven't confirmed it with a biopsy, I consider myself cured at this point. That's the nice thing about LC, they do feel it can be cured unlike Crohn's and I do believe I am one of those lucky ones.
I personally believe that there are a variety of cause of Lymphocytic Colitis. It makes sense really. All LC really is, is a bunch of lymphocytes that have been hanging out in your intestinal tissue for a long time leading to some inflammation and all the fun associated with that.
The problem then arises of figuring out what is the underlying cause. I went through a multi-year experiment of changing everything from diet to pretty much every environmental variable I could and seeing if that helped.
What made the most difference?
One stretch.
I drove my wife and myself crazy changing every variable in our lives and in the end, all I needed was a stretch. A stretch that it took me only 3 years to figure out. CT scans, colonoscopies, countless blood tests, and all I needed to do was a specific stretch.
Seriously. One very specific yoga stretch made all the difference in the world for me. As crazy as it sounds, I believe my excess lymphocytes were a result of tension in specific areas of my body not allowing my body to function properly. Sorta like a kinked garden hose. To this day I will once in awhile start to feel that old twinge, do the stretch for a couple days in a row, and be fine.
It's not something I really mention because if someone would have told me, when I was at my worst, that a single stretch would make all the difference, I might have punched them in the face. And I feel bad saying it on this forum considering people with Crohn's could probably do all the stretches in the world and it wouldn't make much difference. But none of that changes the fact that it is the truth for me.
I believe, for me, what the doctors saw under their biopsy was a microscopic manifestation of a macroscopic issue. It would be like looking at car engine pistons under a microscope and seeing microscopic abrasions when the real issue is no oil in the engine.
Do I believe this is the cause of most people's LC? Definitely not. It could be dietary, it could be environmental, it could be genetic, it could be stress related, it could be a combination. I don't know. And that's one of the things that really sucks. There's just so little known about it.
As such, the best advice I can give is to be the world's most open-minded scientist. Form hypothesises and test them. You're your own guinea pig.
While I haven't confirmed it with a biopsy, I consider myself cured at this point. That's the nice thing about LC, they do feel it can be cured unlike Crohn's and I do believe I am one of those lucky ones.
I personally believe that there are a variety of cause of Lymphocytic Colitis. It makes sense really. All LC really is, is a bunch of lymphocytes that have been hanging out in your intestinal tissue for a long time leading to some inflammation and all the fun associated with that.
The problem then arises of figuring out what is the underlying cause. I went through a multi-year experiment of changing everything from diet to pretty much every environmental variable I could and seeing if that helped.
What made the most difference?
One stretch.
I drove my wife and myself crazy changing every variable in our lives and in the end, all I needed was a stretch. A stretch that it took me only 3 years to figure out. CT scans, colonoscopies, countless blood tests, and all I needed to do was a specific stretch.
Seriously. One very specific yoga stretch made all the difference in the world for me. As crazy as it sounds, I believe my excess lymphocytes were a result of tension in specific areas of my body not allowing my body to function properly. Sorta like a kinked garden hose. To this day I will once in awhile start to feel that old twinge, do the stretch for a couple days in a row, and be fine.
It's not something I really mention because if someone would have told me, when I was at my worst, that a single stretch would make all the difference, I might have punched them in the face. And I feel bad saying it on this forum considering people with Crohn's could probably do all the stretches in the world and it wouldn't make much difference. But none of that changes the fact that it is the truth for me.
I believe, for me, what the doctors saw under their biopsy was a microscopic manifestation of a macroscopic issue. It would be like looking at car engine pistons under a microscope and seeing microscopic abrasions when the real issue is no oil in the engine.
Do I believe this is the cause of most people's LC? Definitely not. It could be dietary, it could be environmental, it could be genetic, it could be stress related, it could be a combination. I don't know. And that's one of the things that really sucks. There's just so little known about it.
As such, the best advice I can give is to be the world's most open-minded scientist. Form hypothesises and test them. You're your own guinea pig.
What a super reply, i really admire your honesty David. It is not easy to tell what may be perceived as an odd remedy/fix. We are all so different and I really enjoy hearing how someone got better.It might not work for everyone, i wonder if you share for the same reason i do? It might help just one person.......and that makes it worth sharing.
Wow David, it was a great reply.
Some good news, I went back on Uceris (9mg) a couple days ago and its already getting better. I've been taking it with Bismuth max, although I don't think that makes much difference. Once I get back to semi-normal I guess I'
ll start some kind of controlled retreat from the Uceris. Don't exactly how I can go about that. But thanks for your comments, made me feel a bit hopeful.
I do believe it could also be related to stress and maybe caused by Ibupropen, although thats too late now. I had neck surgery last year and prior to that I was taking close to 20 Ibuprophen a day. I've been stressed for the later of 2 years and the LC just makes it worse.
Anyway, let me know the Yoga move, I'll give it a shot.
:thumright:
Some good news, I went back on Uceris (9mg) a couple days ago and its already getting better. I've been taking it with Bismuth max, although I don't think that makes much difference. Once I get back to semi-normal I guess I'
ll start some kind of controlled retreat from the Uceris. Don't exactly how I can go about that. But thanks for your comments, made me feel a bit hopeful.
I do believe it could also be related to stress and maybe caused by Ibupropen, although thats too late now. I had neck surgery last year and prior to that I was taking close to 20 Ibuprophen a day. I've been stressed for the later of 2 years and the LC just makes it worse.
Anyway, let me know the Yoga move, I'll give it a shot.
:thumright:
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- Sep 25, 2014
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Great and inspiring reply.... And congratulations on your cure!
I would also greatly appreciate to hear about the stretch also...and any other advice to a starting point of a stretching/yoga routine for CC.. TY so much to you and everybody that contributes to this forum.. It is a godsend as I was just diagnosed on monday I have Collagenous Colitis, although the GI office had their heart and suggestions to me in the right place it just seems after reading all my ADD could take in over the last couple days their help just seems to contradict what others with this poopy disease suggest and do to treat themselves..
Thanks much again to all and I look forward to joining in more on the forum..
Have a great and pain stress free day as possible all..
Steve
David
Co-Founder
I'll make it easy.
Step 1: try doing half moon pose: http://www.yogajournal.com/pose/half-moon-pose/ -- I suggest doing it supported where you do it against a wall with something near the ground to help you steady yourself. Really push away from yourself like you're trying to lengthen the length of your entire side from your shoulder to your heel. Hold it for at least 30 seconds and do it twice per side.
Step 2: report back here if you felt something... good... in your lower back/hip/upper leg area and/or your symptoms change at all.
This isn't the stretch but it was the yoga pose that relieved the pain a little and made me realize it may be muscular. If anyone feels relief from this pose like I did, then I'll take the time to detail the stretch (it's kinda intricate).
Step 1: try doing half moon pose: http://www.yogajournal.com/pose/half-moon-pose/ -- I suggest doing it supported where you do it against a wall with something near the ground to help you steady yourself. Really push away from yourself like you're trying to lengthen the length of your entire side from your shoulder to your heel. Hold it for at least 30 seconds and do it twice per side.
Step 2: report back here if you felt something... good... in your lower back/hip/upper leg area and/or your symptoms change at all.
This isn't the stretch but it was the yoga pose that relieved the pain a little and made me realize it may be muscular. If anyone feels relief from this pose like I did, then I'll take the time to detail the stretch (it's kinda intricate).
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