bile acids and mucous. Pain and MC

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frank
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bile acids and mucous. Pain and MC

Post by frank »

G morning all. Hope this week is starting off wonderfully!!!

I am at a junction with my early journey with MC. Frustration is starting to set in as the progress has been REAL slow, and i am now feeling as though I've exhausted all options, and improvements/remission/health seems to be out of reach. I've been on a very basic diet for 3 months now, with only tiny signs of improvement. I've been using Cholestramine for 4 days now, and have eliminated dairy and eggs completely form my diet and am on the paleo reset diet. I don't feel healthy with the amounts of meats that I'm eating, and prefer to eat more veggies, fruits and nuts. I am also for the first time in 4 months, yearning for grains. I am constantly hungry, too thin, and loosing motivation since the MC hasn't improved much. As you may have read in my previous post, there is an abnormality in my jejunal loops that has me concerned. Since using the cholestamine, BM have thicker and whiter mucous enveloping the stool - despite removing dairy and eggs!! I am wondering if this is the body flushing out the mucous from the dairy/egg intolerance, or if the cholestramine is capturing the bile acids and expelling them as mucous?

Thanks to each of your responses and advice to find my own healing diet. But, this is much harder than I thought given that I cannot complete a entro lab test at present. I've decided to try paleo, and have to broaden my food choices to satisfy my appetite die to lack of dairy and eggs. My diet is very bland, yet I'm frustrated because I'm unsure how to proceed in correcting/modifying my diet with proper healing foods. I assumed Paleo would work best, but am hearing from some on this site that i need to create my OWN personal diet - this is the confusing part for me.....

Secondly, I recently re-aggravated an injury on my tailbone area, which never did heal completely. This injury has been plaguing me for 2.5 years, and at its worst, I cannot bend, walk, etc. Lifting any weight seems to trigger this symptom, adn causes things to freeze up. Given what I'm experiencing, and have experienced, I wonder if this is causing the MC? No doctors have found any problems with this area, and constantly dismiss my grave concern when I explain how this feels VERY atypical and is not a common/bearable pain.

thx for listening, and apologies if the mood is negative. I am constantly optimistic, and believing my ability to conquer this disease. I'm just tired form all my unsuccessful attempts to date.

Have a great week,
frank
Stay calm.....and enjoy life!!!
frank
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Post by frank »

FYI, I noticed that most topics in the main board rec no replies. Perhaps this post should be placed elsewhere?

I very much welcome any and all replies. Your advice and experience matters.
Stay calm.....and enjoy life!!!
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Post by Polly »

Bummer, Frank!

It is perfectly OK to have an occasional pity party! We have all walked in your moccasins and fully understand.

Patience will eventually pay off. It took me almost 9 months to see a formed BM after initial diagnosis, using diet alone to treat the MC. It can take the gut mucosa a LONG TIME to recover. Initially, a boring and bland diet works best. Like starting with maybe 3-4 foods that you are pretty sure you are OK with - chicken, cooked squash, sweet potato, maybe some rice. If you don't see an improvement in a week or so, you may want to switch out one of your few foods and try another like lamb instead of chicken or cooked carrots instead of squash. New foods should be added in one at a time for a few days to make sure you don't react. This is a tedious process but the only way to find out your own personal custom diet. It also helps immensely to keep a food journal - note the time you eat each food and the time you have any symptoms - bloating, diarrhea, nausea, aches/pains, etc. You will better see relationships this way.

What exactly are you eating now? Most of us do tolerate meat but we cannot tolerate a lot of fiber. IOW, it's best to avoid nuts/seeds/ and raw or barely cooked veggies/fruits for now. The paleo diet is heavy on veggies/fruits/nuts - that's why you might want to try some rice for now. It will help with your grain-craving and may help you to maintain your weight. Once you have some healing under your belt, you can usually add the fiber back in.

The mucous is the body's (gut mucosa's) response to inflammation. I would doubt that the cholestyramine is having much effect on it. If the cholestyramine is going to work, you should see a decrease in the amount and frequency of diarrhea fairly quickly. Not sure whether there is any relationship between your tail bone issue and the MC. We do know from our experience here that inflammation near the colon (like from a bladder infection or kidney stones) can aggravate MC. Just a thought - are you taking NSAIDs for the tail bone pain? They are a no-no for those of us with MC. Have you tried physical therapy or regular exercises or acupuncture for the pain?

Also, are you taking any vitamins/herbs/other supplements or medications? These are notorious for containing ingredients unsafe for MCers - not just gluten, dairy, soy but colorings/preservatives, etc. They can interfere with the ability to reach remission.

Do you know for a fact that you have a problem with bile acids? We don't have a good test for them in the U.S. but maybe Canada does? So a trial of sequestrant medication is often the best way to see if there is a problem with bile acids.

Hang in there - it WILL get better, no matter how dismal things seem at times. Keep us posted on your progress. Your usual optimistic outlook will help immensely in the long run.

Polly
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Post by Lilja »

Wow, Frank, what you say about your tailbone reminds me of my own tailbone. I have fallen on ice and snow (2001), I have fallen in a staircase with a slippery carpet (in 2007), and I have fallen when I missed the chair, and banged my butt to the floor (in 2009).

Three times, and with terrible pains. According to my GPs, nothing could be done. These histories date back before my diagnosis in 2010.

Could there be a link here? Your history and mine, make me wonder.

I have never thought that there could be a link between my CC and the tailbone injuries.

I'll see if I can find any litterature about it, but then again - would it help to know?

PS: I do remember that I went to my chiropractic in 2008, and that he pressed his hand really hard towards the tailbone, and I remember that the pains disappeared.


Lilia
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
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tex
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Post by tex »

Hi Frank,

Concerning the slow progress/absence of healing of your tailbone injury: I had the same problem with my tailbone for a couple of years following a fall on a wet floor. It never healed until I had major abdominal surgery which caused me to be confined to bed for almost a week, followed by a week or so of only minimal activity. And of course the surgery involved all sorts of antibiotics and various other medications. I'm pretty sure that the minimal amount of movement for so long allowed/helped it to heal.

But here is why I believe this problem is closely tied to IBDs (including MC):

As background information, so that you can understand what the other quotes mean, here's a refresher on the definition of the medical term "apoptosis". From page 22 of my book, Vitamin D and Autoimmune Disease:
Before damaged cells can be replaced however, they must be removed, so they are marked by the immune system for destruction as part of the process of programmed cell death. This is the same mechanism used by the body for normal replacement of cells that are old and are scheduled for routine replacement on a regular schedule. The medical term for programmed cell death is "apoptosis".
Note that there is absolutely no medical research available that specifically claims to prove the cross-connection between diseases that I am suggesting here, but I have assimilated medical research articles from many sources and used them as references to support a theory, based on compelling evidence, IMO. The following quotes probably will not make complete sense if you have not read chapter 5 in the book, but consider the points they make.

From pages 65 and 66:
An important link between cancer and autoimmune disease has been found in a protein known as survivin.
While survivin is highly expressed in fetal tissue during development, it's normally absent from adult tissue.18 Very recently, researchers have discovered that the T-cell lymphocytes that are responsible for the inflammation that causes MG, contain survivin.19 Survivin is well known to cancer researchers, because it is one of the proteins known as "inhibitors of apoptosis proteins" (IAPs). In medical circles, survivin is also known as baculoviral inhibitor of apoptosis repeat-containing 5 (BIRC5). In humans, it's encoded by the BIRC5 gene.

As the descriptive name suggests, these proteins share the distinction of being able to inhibit programmed cell death. Obviously this implies that IAPs are capable of preventing the immune system from destroying cells that are protected by IAPs, and this technique is a primary survival tool used by cancer cells.

So now we can see that the inability of the immune system to clear the debris at inflammation sites may not be simply due to an overwhelming accumulation of debris because of chronic inflammation. The primary cause of the interrupted healing process may be due to the inability of the immune system to proceed with the process of apoptosis (due to the presence of inflammatory T-cells protected by survivin, or possibly another inhibitor of apoptosis protein). If these T-cells cannot be stopped by the immune system (by apoptosis) from continuing to inflame surrounding cells, then existing debris cannot be properly disposed of so that the damaged cells in the area can be replaced with new, healthy cells.
A lot of information about other AI diseases is skipped here, but from page 71:
Survivin has also been associated with rheumatoid arthritis and multiple sclerosis.
Researchers (Bokarewa, Lindblad, Bokarew, and Tarkowski, 2005) have previously verified that survivin is present in the synovial tissue of severely-affected joints of rheumatoid arthritis patients.24 And other research done by Hebb et al. (2008) found elevated levels of survivin in T-cells and brain tissue of multiple sclerosis patients.25

So it appears that survivin is a common thread among AI diseases. But interestingly, Bokarewa, Lindblad, Bokarew, and Tarkowski, (2005) found that high levels of anti-survivin antibodies appear to be a marker of less severe disease. What does that suggest? It implies that when the immune system is properly activated, in other words when adequate levels of vitamin D receptors are expressed (as described by the research previously discussed in this chapter), then the capacity of the disease to damage tissue (and to cause clinical symptoms) is significantly down-regulated.
Here are the references from those quotes:

18. Adida, C., Crotty, P. L., McGrath, J., Berrebi, D., Diebold, J., & Altieri, D. C. (1998). Developmentally regulated expression of the novel cancer anti-apoptosis gene survivin in human and mouse differentiation. American Journal of Pathology, 152(1), 43–49. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/9422522

19. Staff. (2014, July 22). Pathogenic connection between autoimmune disorders, cancer found. ScienceDaily. [Web log message]. Retrieved from http://www.sciencedaily.com/releases/20 ... 142411.htm

24. Bokarewa, M., Lindblad, S., Bokarew, D & Tarkowski, A. (2005). Balance between survivin, a key member of the apoptosis inhibitor family, and its specific antibodies determines erosivity in rheumatoid arthritis. Arthritis Research & Therapy, 7, R349–R358. Retrieved from http://arthritis-research.com/content/7/2/R349

25. Hebb, A. L., Moore, C. S., Bhan, V., Campbell, T., Fisk, J. D., Robertson, H. A., . . . Robertson, G. S. (2008). Expression of the inhibitor of apoptosis protein family in multiple sclerosis reveals a potential immunomodulatory role during autoimmune mediated demyelination. Multiple Sclerosis Journal, 14, 577–594. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/18566024

So here is what I am suggesting:

Your tailbone injury that refuses to heal probably involves arthritic (or arthritic-like) inflammation (by now). That means that if there are T-cells in your intestines that are causing chronic inflammation because they are shielded from destruction by the immune system due to the fact that they are producing the inhibitor of aptosis protein known as survivin (or some other IAP), then your tailbone injury is probably also inflamed by T-cells that are protected from destruction by the immune system by survivin. And that's why it can't heal.

So we don't have medically-valid proof (verified by random, double-blind trials), but IMO the association is extremely compelling, if we consider the appropriate existing published medical research articles as stepping stones to reach a logical conclusion. But I'm afraid that if you tried to convince your doctor of this theory he would probably look at you as if you had suddenly sprouted 2 more heads. :lol:

Do you know your vitamin D level? As a minimum, it should be above 75 nmol/L, and ideally (IMO) it should be up in the 150 nmol/L range when we are trying to suppress the inflammation that causes MC.

Tex
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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.
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Post by Gabes-Apg »

And I would encourage Magnesium supplementation - using magnesium spray/lotion is a great way to get good intake without risking D.

one of the reasons for the pain could be that the blood is taking the magnesium from the bones - this is also common if there is low Vit D levels...
Gabes Ryan

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Post by nerdhume »

Frank,
Sorry to hear you are having such a tough time right now.
The others have given excellent advice, just wanted to add that I have been in remission (meaning to me 1-3 BMs per day) since June 2014, on a restricted diet for about a year, and just now getting enough healing to see 'normans' without medications. It seems to take forever, but will be well worth it to control the symptoms without all the side effects of the meds.
Also, I suffered from lower back pain for many (10 or so)years, doctors only gave stronger pain meds. Within the first month of the restricted diet the lower back problems stopped and have not returned. Also stopped arthritis and fibromyalgia.
Hang in there and keep reading!
Theresa

MC and UC 2014
in remission since June 1, 2014

We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
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Post by Erica P-G »

I have appreciated reading everyone's comments....it seems I needed to hear a lot of what Frank had questions about too....I've been feeling down lately, and I agree the Dr. information thing is REAL SLOW, and in the mean time I keep introducing something that produces a flare up....so I am with you Frank ;-) I am sooo tired of this MC stuff and can't wait until the day when I have it under a better control.

It's taken me so long to find this forum, and now that I am here I have taken more action because I understand the steps better....Stool tests galore for Food sensitivities, enzymes, bacteria, vitamin levels....you name it then a Budesonide regimen so that the inflammation can heal properly, and elimination diet on top of it all so that the medication works like it's supposed to which should lead to remission...YAY....

Gads what a LONG ROAD......

Here's to all the healing we can muster along this journey :toast:
Erica
frank
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Post by frank »

Hi everyone!!

Hope the week has been bright and positive for each of you :grin: !!!

Thanks for all your responses. I truly learn from each and every response, and the positivity is encouraging and motivating. In particular, I'd like to respond to Tex and Polly. Firstly, thanks :grin: . Wrt my current diet, I've been eating bland for 3 months now. However, adhering to the SCD preliminary diet which includes homemade yoghurt, cottage cheese and homemade cheesecake. I experienced improvements, but cramping, and mucous continued, and there was little bulk in stool. Thanks to the knowledge from members of this site, I've switched to a Paleo beginner diet (no dairy or eggs). Basically, I eat bone broths with cooked carrots, summer squash, celery. The broth has chicken, or turkey. I also incorp fish, beef or lamb (oven roasted or BBQ) at times. I've been intro non starchy veggies (cooked green beans, broccoli rabe, kale), and sweet potatoes. For fruits (only recently), I've eaten peeled and cooked pear and plantain (in coconut oil). For all these veggies and fruits, approx half a cup a day (and not all on the same days). No more grape juice (except for a sip every few days), and 1/8 cup black coffee every other morning. I supplement with cod liver oil, and have recently aborted capsules of Vit C adn D3. The only other component is Cholestramine (unfortunately, made with sucrose...I find sugars-incl stevia-are not tolerated). Since starting Paleo 4 days ago, cramping and internal gas has subsided or disappeared, although BM always begin gassy. BM today have noticeably less mucous and are much better in form.

I continue to yoga, and am trying to resume exercise. However, the same plaguing injuries continue (hip, glutes, and back). I am finding ways to reduce stress, which is also a big help. Notably, spring weather with sunshine is also having a positive effect.

In terms of my vit D levels, I'm not certain what they are because eliciting this info from MD's is truly like mission impossible. I always request blood work to analyze vit levels, but encounter resistance each time. I have a copy from my latest analysis, which I requested for all vitamins (especially B12), but vit D is not on the report :sad: .

On this analysis, all noted vit and minerals appear normal. The only concern is that the ANA is positive, identifying inflammation. Suddenly, my MD is taking notice, and states this is connective tissue disease.

Anyhow, This, for me, confirms that all my issues are related, and they all need to be treated for improvements to follow. My question for Tex, how can the T-cell problem be corrected or managed?

Cheers,
Frank
Stay calm.....and enjoy life!!!
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Post by brandy »

Hi Frank,

Welcome!

I got the same runaround from my Doctor regarding testing for vitamin D3. I ended up paying for the test myself and using the lab from the Vitamin D council website. https://www.vitamindcouncil.org/about-v ... vitamin-d/

Results were quick and price was reasonable.

You may have to email them as you are in Canada and ask about procedures.

PS. Yoga is really good for us!

Brandy
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Post by tex »

Frank wrote:My question for Tex, how can the T-cell problem be corrected or managed?
By cutting all inflammatory foods out of the diet, antibody levels will slowly decline and the production of new T-cells will be reduced so that their total numbers will slowly decline. As that happens, the inflammation will slowly fade away. You're on the right track.

Tex
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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.
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Post by tex »

Brandy wrote:Results were quick and price was reasonable.
And I recently checked the results of that lab (ZRT Laboratories) against the results from the lab used by my doctor, and I was very pleased to see that the results were identical. :thumbsup:

I recall that a few years ago, before the Vitamin D Council decided to endorse that lab, there was 1 or more laboratories in this country providing wild and completely unreliable test results. It's mighty nice to have a lab with direct access where we can get a vitamin D test whenever we want, and without begging our doctor. :lol:

Tex
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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.
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