newcomer question.....

JLH · Post by **JLH** » Thu Jul 14, 2011 6:39 pm

I ate Van's Waffles at first and tolerated them just fine. A month or two later, I reacted to them and suspected soy because of the experience of the PP. My EnteroLab test confirmed it.

alclarkson · Post by **alclarkson** » Thu Jul 14, 2011 8:58 pm

Dx LC 04/11 My GI said my case wasn't severe enough for entocort, so I was put on pepto 3xs a day for 2 months. Well, I made it through about 2 wks and then started tappering myself off b/c it solved the D problem & the awful belly aches and bloating, but caused constipation. I was doing very well for about 3wks taking nothing & then a flare up came on about 2 weeks ago. I've been alternating pepto & loperamide for a bout a week and I'm slowly getting better. I think I may stick to taking a pepto a day once I get this under control.
P.S. I'm one of the stubborn ones that doesn't want to change their diet!

Post by **tex** » Thu Jul 14, 2011 9:55 pm

Andrea,

You're probably going to need to take Entocort regularly, or one of the 5-ASA medications, (Asacol, Pentasa, Colazal, Apriso, Lialda, etc.), if you don't want to change your diet. Your GI doc is mistaken. The severity of symptoms from LC have nothing to do with the actual lymphocyte count made during the diagnosis - there's no correlation. IOW, a relatively low lymphocyte infiltration count does not correlate with a light case.

Tex

alclarkson · Post by **alclarkson** » Fri Jul 15, 2011 5:20 pm

I would love to take the entocort and have actually asked for it. I'm pretty sure the GI doc said if the pepto didn't work then we could move onto the entocort. I suppose I could just fib and say it's not working. Maybe once all this lap chole nonsense is over I will put some pressure on getting the entocort. Are there any side effects though from being on a low dose steroid for long periods of time?

Joefnh · Post by **Joefnh** » Fri Jul 15, 2011 5:29 pm

Andrea entocort is probably the safest steroid as very little of it makes into your body as a whole and that which does is broken down and is eliminated by the liver quickly. The members here report very few side effects but there are some. From what I can tell there should be no real issue in using entocort for a modestly long period of time.

I would reeccomend that you use that time to address any dietary issues and periodically slow down on the entocort to see if you can manage your symptoms with diet alone. Obviously no meds is best but if things do not settle down the meds can be quite helpful in maintaing a good quality of life.

Best wishes as you find your path towards wellness

Take care Andrea

Joe

alclarkson · Post by **alclarkson** » Sat Jul 16, 2011 6:16 pm

Thanks for the info Joe. I feel like if I got a good run of steroids in me I could not this crap out

of my system!

coryhub · Post by **coryhub** » Mon Feb 11, 2013 5:46 pm

ELECTRONIC MEDICAL--YOU MUST WATCH THIS!

http://www.msnbc.msn.com/id/21134540/vp ... 2#50582822

Post by **tex** » Tue Feb 12, 2013 12:39 pm

Cory,

I'm amazed that no one responded to your last post. I had been giving some serious thought to writing a book about the future of medicine, based on exactly the technology presented in that video. I had the basic book already set up and formatted, but after I started researching it, I discovered that a lot of what I had planned to write about is already out there for anyone to see, so I dropped the plans.

Anyway, the point is, IMO the concept presented in that video is right on target — that technology is indeed a big part of the future of mainstream medicine, because mainstream medicine is going to be pretty much forced to make such changes in order to remain competitive in the future. And as was pointed out in the video, much of the technology is already available, so utilizing it is simply a matter of integrating it into the existing infrastructure, and fine-tuning it to meet the needs of both patients and their physicians.

Thank you for posting that link.

Tex

coryhub · Post by **coryhub** » Tue Feb 12, 2013 1:12 pm

Hi Tex,
Yes, the research into future health service applications is fascinating. It's nice to see technology used in a way that helps society. Right now prices to install these applications are reasonable so let's hope the copywriters don't sell out to large Chemical/Pharmaceutical companies. I wish more people would realize that money is not everything and greed can be evil.
I am glad to hear your are thinking about a second book. You are such a good writer! On my next trip to the GI, I am going to sound so knowledgeable thanks to you and this website.

Martha · Post by **Martha** » Tue Feb 12, 2013 1:36 pm

That's pretty impressive. Looks like I'm going to have to get a smartphone one of these years.

I can't imagine that the medical establishment will welcome something that will cut out expensive tests, though.

jgivens · Post by **jgivens** » Tue Feb 12, 2013 3:16 pm

I feel so awed when I see something like that. I really do hope that we can keep the prices down on this technology and out of the clutches of the greedy pharmaceuticals and insurance companies who only think about how they can work things to their advantage.

Cory,
I have been thinking about a reply to you for about 24 hours now and have not had the time to sit down and write it out. I too, am new to this disease (December) so I can tell you that I have had overwhelming cravings. It is true that we ARE addicted to gluten and dairy products (http://www.corepsych.com/2007/08/celiac ... nd-casein/) and as such the same receptors in our brains that are activated by opiates are activated by gluten or dairy (casein). So, you were not really far off when you suggested that you might have to do a 12-step program. Having been a mental health nurse for years and having worked with addicts and the 12 -step program, I can say that I have employed it in this case to help me when I think I can't stand another minute of this deprivation. If I can say to myself that all I have to do is not eat dairy or gluten for 24 hours and I don't have to think about the future beyond that, I can do it. And... it is true! I might not always have to deprive myself. I might be able to eat something that is dairy-related or gluten related some day. Things can change, but I don't need to think ahead and think about how deprived I feel.

The other thing that helps me and truly couldn't help an addict (because when you are addicted, you have no control over it) is knowing that no matter how many pills mask the problem and allow me to eat forbidden foods, I am still doing damage to my intestinal system. The pills do NOT protect me from causing serious irreversible damage to myself and probably in the long run either making my old age very difficult for me and my children or shortening my life significantly. Because I come from people who live a very long time, I want to make sure that I am not hanging around into my 90's in a miserable condition just because I decided that I couldn't or wouldn't take care of myself years before. It is a decision all of us have to make sooner or later and for me, I have to choose to take care of myself now.

coryhub · Post by **coryhub** » Tue Feb 12, 2013 4:32 pm

Hi Jane,
I love your suggestion of "just for a day, I can do this", and if I do that the future may take care of itself. I have longevity in my family too, both parents are 90 this year and still actively enjoy life.

I think the serenity prayer applies too:

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

Best,
Cory