SURGERY AS A TREATMENT OPTION

[louislangley]

I'm a newbie and desperately need advice! My sister has had CC for 11 years. She has, as you would imagine, been through most all of the treatments, remedies, procedures etc. mentioned in this forum. She has tested negative (blood and fecal) for celiac disease more than twice. She has now been on a "PICC Line" (Peripherally Inserted Central Catheter) (IV feeding tube) for over a year. She cant eat - it makes her sick. She feels very sick all the time. Now weigh less than 90 lbs. As last resort her GI is now reluctantly recommending fecal bypass (ileostomy).

We would like to know if anyone has knowledge of any person who has resorted to an ileostomy for any form of MC and what success they may have had. Would anyone recommend this in my sisters case? Sorry for such a gloomy post - we have been encouraged by those in this group who have beaten this disease one way or the other. Thanks to all who created and sustain this invaluable support group and warehouse of info.

Louis

[starfire]

WOW!!!
No, I know of no one who has resorted to surgery to "cure" this disease. I also don't know of anyone who is in the predicament you described.

You said everything has been tried that has been discussed on this board.
I'm assuming, then, that she has been on prednisone, entocort, etc. at one time or another. Also that she has been on a greatly modified diet (at least gluten free) for an extended period of time.

Could you please give a more detailed history? It would be helpful for ones who are more knowledgeable than I to respond.

Shirley

[JLH]

NO, to the surgery. She needs testing by EnteroLab to see if she has food intolerances (gluten, dairy or soy) like most but not all of us. Most of us are not Celiacs but definitely have gluten sensitivity.

www.enterolab.com Our genetic and food intolerances tests:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10084
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10089


Read more here starting with the newbies section.

[JLH]

http://www.huffingtonpost.com/dr-mark-h ... 79089.html

[JLH]

http://www.perskyfarms.com/phpBB2/viewt ... light=daaa

[tex]

Hi Louis,

Welcome to our discussion board. I'm sorry to hear of your sister's predicament. She obviously is in a very serious situation. I'm not a doctor, but I do know a bit about this family of diseases, and IMO, she may have other issues causing the intensity of her symptoms. I'll get to the details of an ileostomy later in my post, but first I'd like to point out that the classic celiac blood tests are worthless for detecting the type of gluten-sensitivity that we have with CC. As Joan mentioned, the only way to determine gluten-sensitivity for someone who does not have fully-developed celiac disease, is by sending a stool sample to a lab in Dallas, Texas for analysis. They are the only lab in the world that can make that determination accurately. None of the other tests, at other labs are reliable, for detecting non-celiac gluten-sensitivity.

A diet that is free of gluten, dairy products, and all soy and legume products, would probably serve her well, as it does many members of this board. Trying the diet for a few weeks is meaningless - it usually takes several months to get results, because the gut has to heal from all the damage caused by those food sensitivities, over the years. Before dropping the elemental diet through the feeding tube, and trying the diet I've suggested, though, her biopsy samples from her last colonoscopy need to be tested for mast cell involvement. This requires a special stain, that most pathologists don't even keep in inventory, so they virtually never use it, unless it is specially requested. Mast cell activity, (in the gut), suggests the possibility of mastocytic enterocolitis, which is a more complex, and little-understood form of MC. It can cause a reaction to many additional foods that are high in histamines, and this may well be your sister's problem. There are specialized diets to handle this condition, also, however. Note that very, very few GI specialists in the world even realize that food sensitivities trigger CC, so very, very few of them are actually qualified to treat the disease.

Yes, an ileostomy will resolve the symptoms of MC, in virtually 100% of cases, according to reports, (see the link below, and note that this article is 15 years old), but it should be used only as an absolute last resort. I have an ileostomy, so I am well-acquainted with the details of living with one on a daily basis. It's not the worst thing in the world, but it's not exactly a treat, either. An ileostomy can be very demanding, and it takes special skills to optimize living with one, but it is certainly better than spending the rest of one's life relying on a feeding tube.

http://www.ncbi.nlm.nih.gov/pubmed/7615 ... t=Abstract

I'll add this caveat about ileostomies. The average user gets about 3 days of service from the appliance that must be glued to the abdominal skin, to collect the stomal output. If the user, (or their caregiver), does not select an optimal appliance to fit the purpose, or if the procedures used to clean and prepare the skin prior to the application are not optimal, the appliance will leak, and the output from an ileostomy is very caustic, (unlike the output from a colostomy, which is pretty much pH neutral). That means that a leak not only has a very offensive odor, but the skin will always be inflamed, and under those conditions, it can deteriorate so that proper application of the appliance becomes almost impossible. When that happens, some ileostomates end up living in the bathtub, because they are unable to effectively attach the appliance.

By proper selection of appliance components, and optimal prep practices, I almost always get 10 days of service from my appliances, and I lead a relatively active life. I have experimented, and I could extend the wear period of the body seal to 14 days, at least, but I don't consider that a good practice, so I limit it to 10 days. I am lucky enough to have a degree in engineering, which definitely helps in analyzing and selecting appliance features, and in experimenting to determine the best procedures for using them. It can be a daunting task, for someone who is inexperienced, so if your sister decides to try this procedure, she should join an online support group, (and maybe a local group, if any are available), to become familiar with what she will be getting into. Be aware that in my experience, (I had a colostomy for 4 years before I had an ileostomy), most surgeons who do those procedures, and the ostomy nurses who show patients how to use the appliances, are not very helpful at advising patients in how to get a good service life, or better yet, extended wear out of the appliances, especially in difficult cases. They only repeat what the appliance manufacturers tell them, and that is a far cry from what many users actually experience. There are a lot of horror stories, about experiences with ileostomies. Like snowflakes, every ileostomy is different, and each requires customized selections and procedures.

We are happy to help, in any way we can, but we definitely suggest that an ileostomy should be considered only if everything else has been tried, (correctly), and if she does decide to try an ileostomy, she should make sure that the surgeon plans to leave the colon in place, and merely divert the fecal stream, in case she doesn't like it, and she decides that she wants to have the procedure reversed. If the surgeon does a colectomy, (removes the colon), then obviously, the procedure could not be reversed. In my case, a colectomy was done, but that is because my ileostomy is not the result of MC symptoms. I was in remission from MC for 6 years when my colon was removed. It was removed because of a massive bleeding issue, (caused by a problem unrelated to MC).

Also, be aware that if your sister happens to be gluten sensitive, (which about 95% of the members of this board are), then an ileostomy may not stop all her symptoms, because the small intestine is usually sensitive to gluten, also, so it can continue to trigger a reaction which technically does not meet the definition of celiac disease, but causes the same symptoms, IOW, non-celiac gluten-sensitivity. Be aware, though, that most doctors do not recognize the existence of non-celiac gluten-sensitivity, (for an archaic reason, which defies logic). They claim that it does not exist, because it has never been scientifically proven. The problem with that logic is, no one has ever scientifically proven that it does not exist, either.

Please feel free to ask anything, and again, welcome to the board.

Tex

[louislangley]

Shirley, Joan, Tex,
Thank you so much for your replies. I am amazed at how fast you were able to respond to my questions and provide such thorough info and advice. None of you may be doctors but the knowledge you have acquired and your willingness to give your time (while dealing with eye surgery and serious health problems of your own) to help me and so many others is more than commendable. Let's just say it is a bit easier to get advice/info from you than the Drs.

My sister, Rene's spirit was truly lifted when she read your detailed and caring replies. When we first discovered your support group we couldn't wait to ask the question about ileostomy. Now with the info/suggestions and links you have provided we we can do further reading and become more familiar with the workings of this forum. I know we should have done this first but it will take me a while to learn to navigate the site and wanted a quick answer/advice. We are not very savvy about using forums or computers in general. I am a slow typer - you know - this index finger then the other.

Shirley, Rene has been through the gamut - sulfasal., entocort, pepto, cholestyr. probiot. etc. Extended use of prednisone has caused her to develop glaucoma and the loss of most of her sight in her left eye.

Tex, would any of you know if using the picc line solution for over a year would keep her from being exposed to gluten and therefore her sickness would most likely not be due to gluten? She hasn't eaten or drank anything in many months - with the exception of Half Litely for colonoscopy.

Rene has an appt. with a new GI at Ochsner Clinic this Wed. Still seriously considering ileostomy. Thanks to your personal exp. she has good idea of what to expect.

Again, Rene is is SO glad to be able to hear personally from those who know what she is dealing with. Thank you all!

Louis

[JLH]

http://www.practicalgastro.com/pdf/Nove ... rticle.pdf

It's too hard for me to read it all (bad eyes for computer) but it seemed encouraging that they mentioned gluten and dairy right off the bat!

[tex]

Louis,

To make sure I'm understanding the situation correctly, I'd like to verify that I have the facts straight. We're talking about parenteral nutrition, (intravenous feeding), not enteral feeding, (using a gastric tube, or a nasogastric tube, for example). Right?

The distinction is important, because with enteral feeding, there is a much wider range of diet options, than with parenteral feeding. With parenteral feeding, only amino acids, lipids, electrolytes, and trace elements can be infused. That eliminates any possibility of protein peptides that could possibly be allergenic. IOW, theoretically, at least, with parenteral feeding, it would be impossible for an immune system reaction to occur in the digestive system. Of course, any of these formulations can be custom prescribed for the individual patient, (and usually are), but With enteral feeding, it's theoretically possible to use partially-digested proteins, (peptides), to which a patient's immune system might respond adversely.

Do you see what I'm saying? With intravenous feeding, there is no way that MC could be triggered by any food sensitivity issue, because no food is contacting the mucosa of the digestive tract. If your sister is still reacting, while being fed intravenously, then something else is the issue, here. My first guess would be medications. Medications can trigger MC, (CC), and while food that doesn't contact the GI tract cannot cause an MC reaction, I don't believe that we can make that assumption about drugs. I suspect that some drugs might be capable of triggering an MC reaction, without even contacting the GI tract mucosa. There is a precedent for this possibility. Stopping a long-term smoking habit, for example, can cause MC, and yet smoking has no direct effect on the GI tract, (the smoke doesn't contact the GI tract, at least not in any significant amount). Since nicotine has been shown to be protective of MC, (and also Alzheimer's, Parkinson's disease, etc.), the effect obviously originates in the brain, and is relayed to the gut by way of the enteric nervous system. It is well documented that many drugs that affect the brain and the central nervous system can cause MC, and therefore, it's probably safe to assume that any drug that affects the enteric nervous system, might also possibly be implicated in causing an MC reaction. PPIs, SSRIs, and numerous other drugs with neurological effects have been shown to cause MC.

If enteral feeding is being used, though, then it's an entirely different situation, because that opens the door to direct GI tract contact. In that case, probably, the problem would be in the formula being used. In that case, your sister might be sensitive to one or more of the ingredients being used in the formula.

So the big question here is. Has she been fed by a stomach tube, or by any other enteric method, or has all of her nutrition been supplied by way of an intravenous tube? Also, has she been taking any medications orally, or have they all been administered intravenously? Have her symptoms continued unchanged all this time? Does she have diarrhea? Or Nausea? Joint/muscle aches and/or pains? Headaches? Migraines? Arthritis symptoms? Brain fog, (the inability to think clearly)?

The reason for all the questions is because if she is still reacting while being fed intravenously, then I can see no logical reason why an ileostomy would provide any benefits. An ileostomy would provide relief only if there were some "toxic agent" in the fecal stream passing through the colon. There should be nothing going through her GI tract but water, (assuming that she drinks water), and there is no way that water would trigger MC. Since there should be nothing going through her colon, (except maybe water, which is an inert item), then, as far as treatment for MC is concerned, she already "effectively" has an ileostomy, and if she is still reacting, then obviously her "de facto" ileostomy is not providing any benefit.

Tex

[ant]

Dear Louis,

Welcome to you and your sister. I am not qualified to enter the discussion here, but just wanted to say I am praying for the both of you.

Best wishes, ant

[adelie]

Hi Louis,

You mention Rene has an appointment with a GI at Ochsner. That's in the New Orleans area, isn't it? I used to live down in that general area and was bounced around between many doctors. I'd highly recommend the GI department at Tulane. It can take a little while to get an appointment unless you have a doctor call down and request an expedited appointment. A few people I know with difficult GI cases who still live in the area have all ended up referred to Tulane. Ochsner is good for routine stuff, but once you get complicated, the university systems are much better in that area. I live up in the Washington DC area now where there are many more options and I still miss my GI doctor down at Tulane.

Karen

[louislangley]

Joan, thanks for the link about gluten/dairy/diet; it is encouraging if that might be Rene's problem.


Ant, thank you for your prayers! We know the power!


Karen, we definitely need to contact Tulane Medical; my son is a TU grad (not in medicine).


Tex, thank you for sticking with us. Here is the answer to some of your questions:


TEX:
With parenteral feeding, only amino acids, lipids, electrolytes, and trace elements can be infused.
LOUIS:
Rene receives her "food" via IV/catheter in her arm traveling to large vein by her heart; I believe it is the superior vena cava (solution is amino acids, electrolytes, sugar etc., as you said).

TEX:
Also, has she been taking any medications orally, or have they all been administered intravenously?
Louis:
She has taken oral doses of of prednisone (I believe somewhat intermittenly) since she has had PICC inserted (over a year ago). She tapered off the prednisone before switching to entocort on Sep 11 of this year (not the first time she has been on these csteriods in her 11 yrs with CC). Additionally she takes opium drops which helps control D, sleeping pills (ambien), combigan eye drops for glauoma, and verapamil for mild hypertension (will explain more about verapamil later). All drugs mentioned in this para are taken orally with the exception of the eye drops, of course.
Rene does take liquid vitamins which are injected into the IV. I believe they are gluten free. The only other thing going through IV is from the bag of amino acids, electrolytes, sugar, etc.

TEX:
Have her symptoms continued unchanged all this time? Does she have diarrhea? Or Nausea? Joint/muscle aches and/or pains? Headaches? Migraines? Arthritis
symptoms? Brain fog, (the inability to think clearly)?
LOUIS:
The only symptoms she has that are mentioned above are moderate to extreme diarrhea. She still thinks clearly. Her main problem is she just feels very bad all the time but more so in the a.m. The smell of food makes her feel sick. When she used to eat (without an appetite) it would make her "feel very bad" afterward. It is difficult for her to describe how she feels every day , "just feel very bad" like one would feel when they have the flu except NOT in pain, cramping or aching (my take). She says if it was only the D she was dealing with she would be OK, and she has seen the green often and had D as many as 15-20+ times /day.

Note: when she was first diagnosed her main problem was D. It is just that over the course of the last 11 years she has become progressively worse as to the way she feels. She has never been in remission, but years ago she had her good and bad days. She also has problems with yeast/thrush and has tried flucanazole, but she hasn't taken flucanazole since she started PICC line, although she still has problems with it, and is, at present, dealing with it. Sometimes she believes much of her problem is due to yeast. I don't know if it is systemic. It usually subsides with the discontinuation of c-steroids but she usually feels even worse when it is active.


TEX:
The reason for all the questions is because if she is still reacting while being fed intravenously, then I can see no logical reason why an ileostomy would provide any benefits. An ileostomy would provide relief only if there were some "toxic agent" in the fecal stream passing through the colon.
LOUIS:
So the cc she has is caused by something else irritating her colon? I guess you've mentioned the factors that could be causing it as well as the route(s )/mechanism(s) of action. It still seems a very complicated task to pinpoint exactly what action should be taken. Of course, if we could, I guess we could cure or put into remission many of those suffering.

ADDITIONAL HISTORY:
The last colonoscopy/egd she had was Aug 24, 2010. Her entire digestive tract, (mouth esophagus etc.) was inflamed. She also has Barrets esophagus - has had gerd for years.

Aug 24, 2010 biopsies of cecun, transverse colon, sigmoid colon ,colon at 10cm, and ascending colon: each showed: chronic colitis, with basal plasmocytosis, intra epithelial lymphocytosis, and subetithelial collagen deposition consistent with microscopic/collagenous colitis. There was no acute inflamation, crypt absesses, or granulomata identified. (taken from biopsy report)

The reason Rene started taking vaporamil:
http://journals.lww.com/jcge/Abstract/2 ... of.16.aspx

I only have access to the abstract, it was a study of only four patients, and apparently offered symptomatic relief (which would certainly be good enough even if there was no histological significance).

Rene started taking verapamil a few years ago in hope of some relief - which didn't materialize - but she continued because V is indicated for hypertension and controls her mild case and she is still somewhat hopeful.

Tex, I guess the bottom line to all of this is after reviewing the above, what do you think about proceeding or not proceeding with ileostomy. I know you have already given your best recommendations/advice from the info provided and I guess the extra history provided just reinforces your opinion but just thought I would double check with a bit more history. Of course, any other adcice/treatments you can suggest will be greatly appreciated. Thank you for devoting so much of your time and knowledge to Rene and me and the many years you spent in acquiring it.

All of you on this board who have replied and posted valuable info, Rene and I cannot thank you enough and will be praying for ALL. THANK YOU!

Louis

[louislangley]

Joan, thanks for the link about gluten/dairy/diet; it is encouraging if that might be Rene's problem.


Ant, thank you for your prayers! We know the power!


Karen, we definitely need to contact Tulane Medical; my son is a TU grad (not in medicine).


Tex, thank you for sticking with us. Here is the answer to some of your questions:


TEX:
With parenteral feeding, only amino acids, lipids, electrolytes, and trace elements can be infused.
LOUIS:
Rene receives her "food" via IV/catheter in her arm traveling to large vein by her heart; I believe it is the superior vena cava (solution is amino acids, electrolytes, sugar etc., as you said).

TEX:
Also, has she been taking any medications orally, or have they all been administered intravenously?
Louis:
She has taken oral doses of of prednisone (I believe somewhat intermittenly) since she has had PICC inserted over a year ago. She tapered off the prednisone before switching to entocort on Sep 11 of this year (not the first time she has been on these c-steriods in her 11 yrs with CC). Additionally she takes opium drops which helps control D, sleeping pills (ambien), combigan eye drops for glauoma, and verapamil for mild hypertension (will explain more about verapamil later). All drugs mentioned in this para are taken orally with the exception of the eye drops, of course.

Rene does take liquid vitamins which are injected into the IV. I believe they are gluten free - will find out for sure. The only other thing going through IV is from the bag of amino acids, electrolytes, sugar, etc.

TEX:
Have her symptoms continued unchanged all this time? Does she have diarrhea? Or Nausea? Joint/muscle aches and/or pains? Headaches? Migraines? Arthritis
symptoms? Brain fog, (the inability to think clearly)?
LOUIS:
The only symptoms she has that are mentioned above are moderate to extreme diarrhea. She still thinks clearly. Her main problem is she just feels very bad all the time but more so in the a.m. The smell of food makes her feel sick. When she used to eat (without an appetite) it would make her "feel very bad" afterward. It is difficult for her to describe how she feels every day , "just feel very bad" like one would feel when they have the flu except NOT in pain, cramping or aching (my take). She says if it was only the D she was dealing with she would be OK, and she has seen the green often and had D as many as 15-20+ times/day. Incidentally she still has b. m. even though she eats nothing. It is still somewhat D. I understand this is "normal".

Note: when she was first diagnosed her main problem was D. It is just that over the course of the last 11 years she has become progressively worse as to the way she feels. She has never been in remission, but years ago she had her good and bad days. She also has problems with yeast/thrush and has tried flucanazole, but she hasn't taken flucanazole since she started PICC line, although she still has problems with yeast/thrush, and is, at present, dealing with it. Sometimes she believes much of her problem is due to yeast. I don't know if it is systemic. It usually subsides with the discontinuation of c-steroids but she usually feels even worse when it is active.

TEX:
The reason for all the questions is because if she is still reacting while being fed intravenously, then I can see no logical reason why an ileostomy would provide any benefits. An ileostomy would provide relief only if there were some "toxic agent" in the fecal stream passing through the colon.
LOUIS:
So the cc she has is caused by something else (not something flowing through her colon) irritating her colon? I guess you've mentioned the factors that could be causing it as well as the route(s )/mechanism(s) of action. It still seems a very complicated task to pinpoint exactly what action should be taken. Of course, if we could, I guess we could cure or put into remission many of those suffering.

ADDITIONAL HISTORY:
The last colonoscopy/egd she had was Aug 24, 2010. According to the med report, her entire digestive tract, (including mouth, esophagus, etc.) was inflamed. She also has Barrets esophagus - has had gerd for years.

Aug 24, 2010 biopsies of cecun, transverse colon, sigmoid colon ,colon at 10cm, and ascending colon: each showed: chronic colitis, with basal plasmocytosis, intra epithelial lymphocytosis, and subetithelial collagen deposition consistent with microscopic/collagenous colitis. There was no acute inflamation, crypt absesses, or granulomata identified. (taken from biopsy report)

Rene has been to more than three GIs, had numerous colonoscopies/EGDs and made a trip to Mayo Clinic. While all biopsies confirm CC, Drs. can't determine why she feels so sick. They did conclude her entire GI tract is inflamed (even her mouth) as of her Aug 24 results.

The reason Rene started taking vaporamil:

http://journals.lww.com/jcge/Abstract/2 ... of.16.aspx

I only have access to the abstract, it was a study of only four patients, and apparently offered symptomatic relief (which would certainly be good enough even if there was no histological significance).

Rene started taking verapamil a few years ago in hope of some relief - which didn't materialize - but she continued because V is indicated for hypertension and controls her mild case and she is still somewhat hopeful of symptomatic relief of CC.

Tex, I guess the bottom line to all of this is: After reviewing the above, what do you think about proceeding or not proceeding with ileostomy? I know you have already given your best recommendations/advice from the info provided and I guess the extra history provided just reinforces your opinion but just thought I would double check with a bit more history. Of course, any other adcice/treatments/alternatives you can suggest will be greatly appreciated. Thank you for devoting so much of your time and knowledge to Rene, me, thousands/millions (directly or inderectly) of others, and the many years you spent in acquiring it.

Rene and I thank All of you on this board who have replied and posted valuable info through the years, Rene and I cannot thank you enough and will be praying for ALL. THANK YOU!

Louis

[Gloria]

Hi Louis,

You don't mention whether she's taken antibiotics. Does she have a history of taking them?

My mother had a feeding tube going to her stomach and a PICC line in her arm going to her heart. The doctor said that the PICC line was not a permanent solution and shouldn't be used long-term. I believe the reason was that it wasn't good for the heart. I do know that she contracted MRSA from having the feeding tube. She was in a nursing home and the law requires that once someone living in a residential community tests positive for MRSA, they must be put on antibiotics. The antibiotics caused D and didn't get rid of the MRSA. She was on a constant round of antibiotics and MRSA, never getting any relief from either.

I mention this because of the possibility of contracting MRSA when having an appliance inserted into the skin. Tex would know more about this, but I thought I would mention it because you are considering an ileostomy.

It's a crime that your sister went to three doctors and Mayo, and none of them suggested she change her diet.

I truly hope that she can get better and resume eating normally.

Gloria

[tex]

Incidentally she still has b. m. even though she eats nothing. It is still somewhat D. I understand this is "normal".

Unfortunately, that's characteristic of secretory diarrhea, and secretory diarrhea is unique to the IBDs, so that in itself is proof that she has active MC, (without the need for a colonoscopy and biopsies).

Sometimes she believes much of her problem is due to yeast. I don't know if it is systemic.

I agree with her. The roots of Candida albicans penetrate between the cells of the intestinal mucosa, causing the tight junctions to open, and this allows peptides and various "toxic" amino acid chains to pass through the tight junctions, into the bloodstream, so that they can be subsequently deposited in various organs, skeletal joints, etc., thereby causing the aches, pains, and other flu-like symptoms that are markers of the leaky gut syndrome. The leaky gut syndrome is what causes the flu-like symptoms that accompanies MC for many MC patients. Not all of us experience those symptoms, though. Those patients who do not have the leaky gut syndrome, do not have the flu-like symptoms.

So the cc she has is caused by something else (not something flowing through her colon) irritating her colon? I guess you've mentioned the factors that could be causing it as well as the route(s )/mechanism(s) of action. It still seems a very complicated task to pinpoint exactly what action should be taken. Of course, if we could, I guess we could cure or put into remission many of those suffering.

The items that she takes orally, need to be very, very, carefully analyzed, because something among them has to be causing her inflammation. Ambien, for example, contains the following inactive ingredients: hydroxypropyl methylcellulose, lactose, magnesium stearate, micro-crystalline cellulose, polyethylene glycol, sodium starch glycolate, and titanium dioxide. The 5 mg tablet also contains FD&C Red No. 40, iron oxide colorant, and polysorbate 80.

Since lactose is the second inactive ingredient listed, there is a lot of it in each capsule. She could be reacting to the lactose, of course. Micro-crystalline cellulose is not normally an allergen, but cellulose is indigestible, which means that it passes intact, into the colon, where bacteria digest it by fermentation. This may possibly be serving as a "prebiotic", to help propagate undesirable bacteria in the colon, which may be the target of an autoimmune reaction, thus causing the inflammation associated with MC. Sodium starch glycolate can be derived from any starch source. For example, corn, rice, potatoes and wheat are all potential sources. Obviously, if the source happens to be wheat, that could be the cause of her problems. Therefore, it is important to determine the exact botanical source of the sodium starch glycolate in the medication before that mediation can be considered safe. Only the manufacturer knows the source, because pharmaceutical products are exempt from the 2006 Food Labeling Law. The Legislature, in their infinite wisdom, chose to yield to the pharmaceutical lobby, and they exempted all pharmacutical products when they passed that bill.

The last colonoscopy/egd she had was Aug 24, 2010. According to the med report, her entire digestive tract, (including mouth, esophagus, etc.) was inflamed. She also has Barrets esophagus - has had gerd for years.

She has, undoubtedly, the worst case of CC that I have ever heard of.

Aug 24, 2010 biopsies of cecun, transverse colon, sigmoid colon ,colon at 10cm, and ascending colon: each showed: chronic colitis, with basal plasmocytosis, intra epithelial lymphocytosis, and subetithelial collagen deposition consistent with microscopic/collagenous colitis. There was no acute inflamation, crypt absesses, or granulomata identified. (taken from biopsy report)

That pathology report shows the classic markers of microscopic colitis, (markers of both LC and CC), and no indications of any other IBD.

I don't know what to think of verapamil. Until you mentioned it, I don't believe I've ever encountered any mention of it previously, in reference to treating MC, (or any other IBD). That abstract is now 9 years old. One would think that if the treatment worked, someone else would have explored the use of it long before now. The thing that bothers me the most about the report, is the fact that they had 100% success with all 4 subjects. The odds of any random 4 patients with any form of MC, (let alone "unresponsive" MC), achieving remission on any one specific treatment, is difficult to visualize, because we are all different, and we all respond differently to various treatment regimens. I'm not saying that the researchers who wrote that report are dishonest, but the odds are almost overwhelming that "creative" methods were used in analyzing the data.

Here's another abstract listing for that verapamil research project, but the details are so limited, that it is of little value.

http://www.ncbi.nlm.nih.gov/pubmed/11276283

I really believe, that if you carefully analyze everything that Rene is ingesting, you will find something, (or probably a collection of items, as I listed above, for the Ambien), that is causing her inflammation. She is so sensitive, that the slightest trace of any sensitivity is enough to perpetuate the inflammation. If eliminating all possible triggers from her diet does not resolve the problem, then she needs to be checked for mast cell involvement. Please see the following link for information on mastocytic enterocolitis:

http://www.thefooddoc.com/mastoctosislinkpage.html

I wonder if anyone has ever checked any of the left-side biopsy samples for eosinophils? That could provide a clue as to whether her inflammation is drug-related. That would certainly help to narrow the search.

http://www.medscape.com/viewarticle/707040

And yes, as long as her MC is active, with parenteral feeding, I don't see how an ileostomy would change anything, (other than to change the location of the output of the diarrhea). An ileostomy would only bring remission, if parenteral feeding successfully brings remission.

Tex

P. S. I have to agree with Gloria, and I can't add much to what she said.