Am I imagining it? Or am I being ignored?

[Lesley]

I asked a couple of questions here, but apart from my post about my posts not showing up I have received NO acknowledgement let alone replies.
Am I not asking politely enough? How do I get one of you to relate to my questions?

I really want to know how people who go through the constipation stage of MC handle it without causing the diarrhea to start up again big time. That's what happened to me last week, and it has laid me low for days. But now I am not having any BMs, and am really uncomfortable.

I also asked if anyone had used juicing as a treatment in order to get nutrients I haven't absorbed for MONTHS. Maybe even years.
I am not doing the full juicing diet, just (under the guidance of a nutritionist and my doctor) am drinking a glass of fresh juice 2x a day. So far my BP has dropped and I am able to dispense with one of my BP meds, and hopefully will get rid of the other.

Oh, and I am gluten and lactose free. Really sticking to it.

[sarkin]

I'm not sure why you aren't seeing the replies, but I think Tex will likely help you sort that out. I didn't answer your post about constipation, because I didn't have anything useful to add - but Tex did. (I've never had C, just relentless D...)

A couple of folks also replied about your "very bad day" post a few days ago - maybe there is something about your settings that doesn't let you see this?

You are not alone, hopefully you can get past this glitch and feel in touch,

Sara

[garina]

Hi Lesley,

I have not had the D and C problem alternately, however, having been C most of my life until all the D started, I can tell you that "Smooth Move" tea by Traditional Medicinals will work. It has Senna in it and is potent. I don't know if it would start the D again or not. Being so potent, I would try just a weak cup of tea first. I don't know how it would work with our MC problem.

You can buy it at Health Food Stores, and I know Vitacost.com has it also.

I wish I could be of more help, because I know how uncomfortable you must feel.

All the best,

garina

[tex]

Hi Leslie,

Are these the threads that you claim received no responses?

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=14561

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=14572

When you don't follow up on your own posts, it leaves the impression that you didn't appreciate the responses, and that, in turn, can cause the number of responses to be limited. I have no way of knowing why you couldn't see any responses. Maybe you're not refreshing your browser page, or you're having other browser problems, but your claim of no responses seems to be a slight exaggeration.

I'm sorry if you feel that you're being ignored, but remember that this is not a doctors office, and none of us are being paid big bucks to supply answers to any questions. We tend to respond to questions to which we feel that we might be able to supply a helpful answer, but when we run short of time, we can't always do everything that we'd like to do. We all lead very busy lives, and unlike most boards, you won't receive umpteen worthless answers to your questions. You'll receive answers based on experiences that we know work, (at least they work for many of us). Trust me, if we were being paid what your doctors are earning for their so-so advice on treating this disease, you would be receiving a lot more replies.

One reason why you didn't receive a lot of responses to your question about constipation-predominant MC, is because not many members have that problem. A lot of GI docs don't even associate constipation with MC. Most people who have the disease, have relentless diarrhea, and they don't have any experience with any other phase of the disease.

To add to my previous response about laxatives, remember that laxatives are irritants to the gut, and an inflamed gut doesn't need any additional inflammation. Stool softeners or certain oils, are generally safer choices, if you feel that you need a non-dietary form of intervention.

Very few of us have tried juicing. A lot of us have used smoothies, though.

Regarding dairy products, if you are avoiding only lactose, (and not casein), that may be part of your constipation problem. Casein is a major cause of constipation, in some individuals. It tends to have that effect on me, as well.

Tex

[hoosier1]

Lesley,

Ahhh... The C/D cycle. I have that occasionally. And after years of just having D, I think the C is worse.

For me, I just eat some citrus (just a little) and things move along again. I have also noticed that when I get C, my bladder pains flare too.

Mostly now, whem I am in the C stag, it is because I took an imodium before a long flight. It tends to bind m up for a couple days.

So if you can handle a little citrus, that seems to work for me. But remember that we are all unique.

Regards,

Rich

[Gabes-Apg]

Lesley

I am one that did reply to your posts, and i am sorry if my response was not helpful or that you felt ignored.

the set up of this forum is very good and you can hunt and gather information yourself via the search function and then browse previous threads and discussions
inputing key words such as Blood pressure, or Constipation or Juicer will bring up previous discussions on these topics.

If you are feeling poorly and you are concerned about the ongoing constipation then you may need to discuss the issue with your doctor

[Polly]

Hi Lesley and

I really have no experience with C (luckily) or juicing, but I wanted to say "hi and hang in there". Excellent choice to go gluten-free. I do agree with Tex that it might be wise to try casein-free (no dairy at all) to see if it helps. I originally thought I was only lactose-sensitive, but later learned I had to eliminate casein.

I have always been a little afraid of full-strength juices, so I dilute them half with water. I guess this is because I have SO many sensitivities (most likely you won't have as many as I do) and I think that I am less likely to react to a smaller amount of a particular food. And juice is so much more concentrated than eating whole fruit. But I also haven't had C, so maybe Rich's idea about citrus will help.

Looking forward to further chats.

Hugs,

Polly

[Sharaine]

Good morning, Lesley,

I have had intermittent C, but mostly D. When I do experience C, I find that a piece of fruit and a cup of coffee help some. I think Garina's suggestion of the special tea might help you, too. If these remedies don't work, I'd encourage you to talk with your doctor.

Welcome to the group.

Sharaine

[Lesley]

Phew! I feel much better now. I have NO idea why I couldn't get to these responses. I got one message to my email, but when I followed it to the board I got nowhere.

Thank you for all your advice. I was (I now believe, mistakenly) diagnosed with Lupus in 2003. I now think, having read a lot on this board, that I have had MC for years. This including the gluten problem, though my GE won't admit the last bit. I am on many, many meds, and want badly to get off them.

I have always had the C problem, and have struggled with it for many years. I have had what I now recognize as flare ups, over and over again, but no one knew what was wrong with me, though I have had to be hospitalized in critical condition), had every possible illness, even weird ones, jump on me because my immune system doesn't work at all.

My electrolytes tend to go crazy and I reach dangerously low sodium levels. I have had high BP so I need to drink so called "free" water, but cannot do that because of the electrolyte problem. So I have been really "bound up" for years.

I am diluting the juice with water. I will try any and all suggestions to solve the C side (though citrus doesn't work for me, nor a piece of fruit, and I can't do coffee because of the GERD) hopefully without having a D attack. I will shop the the things I need and will totally get of any bovine milk products. Luckily I like goat cheese and rice milk very much.


One thing I am thankful about is FINALLY having had the problem diagnosed so I can address it head on. The other thing is having found this board. Once again, thank you all!

[tex]

Hi Leslie,

The article at the following link explains why gluten-sensitivity can masquerade as lupus:

http://www.ncbi.nlm.nih.gov/pmc/article ... p01501.pdf

And the article at this link explains how a vitamin D deficiency can make lupus and other autoimmune issues worse:

http://ard.bmj.com/content/70/9/1569.ab ... e=HWCIT&ct

The odds are very high, that your vitamin D level is way too low.

I'm glad that you're finally able to see these posts.

Tex

[KYKatie]

I've found MiraLax to be very effective in dealing with the C. I've dealt with C for years and have a history of taking stool softeners (Dulcolax) every night, but after prior to my first major MC D flare I had about a 6 week bout of major C. I tried stool softeners and several things to loosen things up, but found the MiraLax to be most effective. From what I understand it only works on the stool, not the bowel itself. I mix it in about 2 ounces of water and then add a little juice; I've also added it to hot tea. It does take awhile to work and is most effective if taken daily.

Hoping you soon find something that works for you!

Katie

[sarkin]

Katie,

That is super-interesting to me - I've gone off on a tangent of wondering about biofilms, and how they bacteria that live in them affect those of us with MC (and other conditions). One of the things I just learned recently is that polyethylene glycol can disrupt those biofilms, making the bacteria in them more accesible/vulnerable to antibiotics, the normal immune system, competition with 'good' bacteria - etc. And polyethylene glycol is the active ingredient in Miralax!

I don't typically have C, but will keep this in mind if my symptoms ever head that way. I'm not sure it has any deeper significance - but maybe it is keeping some evil bacterial population from establishing a firm foothold in your system, while diet also helps you establish an environment that's friendly to the "good guy" bacteria. That's just wild speculation... mostly, I'm glad you've found something that works!

Sara

[tex]

Sara,

I get the impression from reading your post that you assume that all biofilms are populated with harmful bacteria. I was under the impression that all bacteria utilize biofilms, whether they are symbiotic or pathogenic. In fact, I would assume that a biofilm environment is an essential element in the mechanism by which beneficial bacteria are able to successfully attach to our gut walls, and establish a "working" population that is capable of resisting attempts at intrusion by pathogenic species. It's certainly possible that I've made the wrong assumptions, though.

Love,
Tex

[sarkin]

Tex,

No, I don't assume all biofilms are bad, by any means. I do think it's possible that once a pathogenic species establishes itself w/in biofilm, it's hard to detect and treat, and even if beneficial bacteria are present, they may be prevented from doing their good work. I don't know whether all bacteria utilize biofilms in the same way - certainly multiple species and classes do use them.

I can't remember exactly how I started down this side-road - but I do think it's interesting, and may have relevance to some MC instances. The connection to histidine/histamine was especially interesting; I seem to be much less reactive, as far as mast-cell symptoms are concerned, and am wondering about those variables.

I'll let you know if I get any further with whatever it is I'm trying to think about...

Love,
Sara

[tex]

I do think it's possible that once a pathogenic species establishes itself w/in biofilm, it's hard to detect and treat, and even if beneficial bacteria are present, they may be prevented from doing their good work.

Love,
Tex