Remicade to treat collagenous colitis

Discussions on the details of treatment programs using either diet, medications, or a combination of the two, can take place here.

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greengirl78
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Post by greengirl78 »

Cheryl,
Did you find the Asacol helped at all? I had read about the tablets passing through like that.

It is difficult adjusting to this new med, but I am very thankful for the speed at which it has corrected the D. I find myself second guessing a lot of my thoughts, worrying that I am getting far too tempermental... though those in my family say that's not a bad thing - as I often don't stick up for myself as I should. :lol:

I haven't taken more than one day off from work throughout all of this. The one day I did, was to recover from my colonoscopy. I have no idea how I worked through all of this. I know I took copious amounts of Immodium and Lomotil, and messed around with my diet obssesively. Now that I'm feeling a little better, I feel like putting in for a week long vacation. :grin:
If we are peaceful, if we are happy, we can blossom like a flower, and everyone in our family, our entire society, will benefit from our peace. - Thich Nhat Hahn
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Post by starfire »

greengirl78 - "I had read about the tablets passing through like that."

It's a very common occurence to have even the entire shell eliminated in your stool. I don't really understand it becuase once I broke one open (disgusting, I know) and there was white stuff inside. Anyway it's normal to see pieces or whole shells in your stool. My doctor told me I would so I wasn't suprised. It does work for me so "whatever".

Love, Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
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tex
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Post by tex »

This topic, (about the Asacol capsules passing through the GI tract and remaining intact, sometimes), comes up on this board every once in a while, so here's the "poop" on that phenomenon:

In order to insure delivery of the active 5-ASA compounds to the ileum and the colon, (without becoming activated in the stomach, or upper small intestine), the ingredients are encapsulated in a "shell" made of acid-resistant acrylic resin, used in combination with sodium bicarbonate/glycine buffering. Two different types of commercial resins are used for the various 5-ASA products, (which include Asacol, Pentasa, Rowasa, Colazal, etc.). The resin used for Asacol is known in the trade as Eudragit S, and the one used for the others is Eudragit L. Eudragit S disintegrates at pH>7, (IOW, a pH value greater than 7, which would be a slightly alkaline level), whereas Eudragit L disintegrates at approximately a pH value of 6, (which would be a slightly acid level). Obviously, a pH value of 6 would be reached sooner than a pH value of 7, as the capsules travel down the GI tract. The pH of the stomach should be somewhere in the 2 to 3 range, (assuming the stomach is producing sufficient acid for proper digestion), and as the chime leaves the stomach, the pancreas dumps bicarbonate into the small intestine, (at the upper duodenum), in order to raise the pH level of the chime as it passes through the intestines.

Therefore, I would surmise that if the pH of your ileum and colon are acidic, (that is, pH below 7), the Asacol capsules will not disintegrate, and should pass through the entire system, in their original form.

If the capsules disintegrate, (IOW, if the pH is greater than 7), then the sulfasalazine parent ingredient will be reduced by the bacterial enzyme azoreductase, to the active ingredients, sulfapyridine, (which is effective to treat rheumatoid arthritis), and 5-ASA, (which is effective to treat colitis). IOW, coliform bacteria are necessary to reduce the relatively inactive parent drug to its active derivatives.

I would further surmise that in the absence of adequate coliform bacteria, (IOW, an inadequate supply of the bacterial enzyme azoreductase), then the conversion will not take place, (the components will not be split and activated), and no benefit will be derived from the drug, even though the capsule might have disintegrated correctly.

Pentasa uses a different technology - it is microencapsulated in a semipermeable ethylcellulose membrane, which is acid stable, and active 5-ASA diffuses through the membrane at a rate that is dependent on the ambient pH. With this system, the time to 50% release at a pH of 2 is 15 hours, whereas at a pH of 7, the time is 4 to 5 hours. IOW, not much will be released in the stomach, and the rate of release will increase as the med travels farther down the GI tract.

Colazal uses a completely different mechanism - it uses one 5-ASA molecule linked to an inert unabsorbed carrier molecule. Colazal is sometimes effective for patients who get no benefit from the other 5-ASA drugs. It still requires the presence of colonic bacteria, however, in order to activate the 5-ASA. Therefore, I would assume that if a patients gut bacteria are in disarray, then the 5-ASA meds may be ineffective.

It's no wonder then, that Asacol does not work for everyone, since the pH of the intestines needs to be in the proper range for the encapsulation to disintegrate, and the colonic bacteria need to be producing the enzyme azoreductase, in order for the 5-ASA to become activated. It would appear that this family of meds would work properly on someone with a normal digestive system, (which none of us have), but it may be ineffective for those of us with the noted digestive system problems. At least that's the way I see it.

Tex
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Post by ccruicks@shaw.ca »

Hi GreenGirl, Shirley and Tex,
Thanks for the helpful feedback and support.
The Entocort continues to work, but I'm feeling a bit sleep deprived. Also am very constipated for a change. I'm eating healthfully and drinking lots of water. Hopefully my lazy gut will kick in.
Tex will the Entcort rebuild the colonic bacteria and enzymes that are required for proper digestion to occur?
What about when I'm weaned off the Entocort?
Will the 5 ASA drugs work? What's the success rate of Encort followed by Asacol therapy?
I hate to think this is just temporary relief.
Tex how are you so knowledgeable?

Cheers!
Cheryl
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Post by starfire »

WOW, Tex!! Thank You. I never even thought about trying to find out exactly how it all works. DUH

Love, Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
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tex
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Post by tex »

Cheryl wrote:Tex will the Entcort rebuild the colonic bacteria and enzymes that are required for proper digestion to occur?
What about when I'm weaned off the Entocort?
Will the 5 ASA drugs work? What's the success rate of Encort followed by Asacol therapy?
I hate to think this is just temporary relief.
Tex how are you so knowledgeable?

Cheers!
Cheryl
Hi Cheryl,

I don't believe that the Entocort is capable of directly rebuilding the colonic bacteria balance and/or enzymes, but it may do so indirectly. Entocort suppresses inflammation, and as the inflammation subsides, your digestion will improve, and things will begin to work more normally again. It is the job of the pancreas to buffer the acid coming out of the stomach along with the chime, (partially digested food). For many of us, (especially those of us who are gluten sensitive), many organs are adversely affected, including the pancreas. In fact, we have one member whose doctor insisted that she had a serious pancreas problem, that would be life-threatening, if not properly addressed. She was pretty sure that the problem was due to her gluten reactions, so she ignored his request for her to undergo an invasive, and rather risky test procedure, (if something goes wrong during the test, the pancreas can be permanently damaged), and sure enough, when she found the final piece of the puzzle that allowed her to fine-tune her diet, not only did her symptoms go away, but the pancreas problem also went away. (The final piece of the puzzle was discovering that the chocolate that she ate regularly, contained a tiny amount of soy, that was not listed on the label).

Anyway, the point I'm trying to make is that as your pH comes back into balance in your intestine, your digestion will also improve, and the environment will be more favorable to the "good" bacteria, and less favorable to the "bad" bacteria, and hopefully, a proper balance will be restored. If that doesn't happen, you might need to help them along by taking a good probiotic, (or a prebiotic). Technically, prebiotic refers to the origin of life, specifically to the state of matter before life existed, but was conducive to the formation of life. The most common use for the term, however, seems to be to describe certain non-digestible food ingredients that selectively stimulate the growth and/or activity of one or more types of bacteria in the colon, and thereby benefit the host, (us), by improving digestive system efficency and/or health.

Usually, prebiotics are carbohydrates (such as oligosaccharides), but the definition does not preclude non-carbohydrates. The most common forms of prebiotics are nutritionally classified as soluble fiber, and to some extent, many forms of dietary fiber have some degree of prebiotic effect, though, obviously, some are better than others.

If I were in your shoes, I would just wait a while, to see if things will get back to normal on their own. It takes time for the gut to heal.

The success rate of Entocort, at standard label rates, (9 mg per day), is in the 60 to 70% range, but I have no idea what the success rate might be for Asacol. I have no research documentation to verify this opinion, but I suspect that there is a good chance that even if Asacol did not work for a patient early on, (before remission was achieved), it might work as a maintenance medication, after remission is established by another med, such as Entocort, because after remission, your intestinal pH should be in the proper range, and hopefully your bacterial balance will be closer to normal, also, so that the 5-ASA in the Asacol can be properly activated. Obviously, that probably wouldn't apply to someone who is intolerant of any of the ingredients in Asacol. Remember, though, I'm not a doctor, so that's just my unprofessional opinion.

Once their gut heals, many MCers maintain remission by taking a "maintenance" dose of Entocort, such as one capsule each day, or one capsule every other day. At those rates, it appears that it can be safely taken indefinitely, by most patients, without a serious risk of complications, or adverse side effects. Of course, others choose to switch to a maintenance dose of Asacol, or some other med. There are various ways to handle the situation, and everyone has to decide what is best for them, in their own particular situation. Some of us start with meds, and then maintain remission by diet.

LOL. It's not that I'm particularly knowledgeable, I've just learned to be a pretty good researcher, and I'm able to remember enough about what I read to be able to tie a lot of it together, so that it makes sense. Of course, on the other hand, sometimes I just confuse myself, and everybody else, in the process. LOL.

Don't worry, after getting a taste of relief, you'll find a way to make sure it continues, so that you can have your life back. That's what this board is for - we learn together, how to fine tune our treatment programs.

Tex
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Post by tex »

Hi Shirley,

LOL. Well, after it kept coming up so often, I began to wonder why it happened, so after wading through several long-winded descriptions of the chemical and pharmaceutical characteristics of how those meds worked, it dawned on me that the pH level minimum threshold requirement in the gut, of 6 or 7, (depending on which med is used), and the bacterial enzyme azoreductase, were both critical hurtles that had to be surpassed, before any of the 5-ASA meds would work properly.

Of course, I could be all wet, but it sure appears to me that this is probably what is happening in the cases where those capsules make the entire trip, and still remain intact.

Love,
Tex
:cowboy:

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 starfire »

HaHa I doubt I'd have made it through the first couple of "sites". I get bored with technical stuff pretty easy. Sure glad you enjoy it!!

Love, Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
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greengirl78
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Post by greengirl78 »

Tex,
Thank you for all of that info - it sure helps me, as I am one who loves to research, but find myself getting lost in all the technical medical speak.

Cheryl,
Are you sleeping at all? I'm still having problems with sleep. I took tylenol PM the other night at 9 PM and sat wide awake in bed until about 2:30. I had to drag myself out of bed at 6 AM when the alarm went off. Last night I took two tylenol PM, and that seemed to do the trick. However, I fear relying on a drug to regulate my sleep. The active ingredient in Tylenol PM is benadryl, but I decided to go the tylenol route due to abdominal cramps.

Sorry for whining, I am very grateful to be almost rid of the D. I have been taking Lomotil to help, on days I work, because it doesn't seem to have fully stopped yet. On my days off I don't care so much.
If we are peaceful, if we are happy, we can blossom like a flower, and everyone in our family, our entire society, will benefit from our peace. - Thich Nhat Hahn
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Post by ccruicks@shaw.ca »

Hi GreenGirl,
After about a week on Entocort the D has stopped and now I'm experiencing the opposite and am having a tough time with that. I increased my fibre. I'm on 9 mg. of Entocort per day and i'm wondering if I cut down to 2 tabs a day, if it will give me some relief, not that I want the D. to return. I am feeling really draggy and have an ache on my left side. I think it's the straining.
Falling asleep and sustaining sleep continues to be a problem, as my mind is wide awake. I do however eventually fall asleep, but wake up several times due to night sweats and sometimes abdominal pain. I get up and let my dog out so I can cool down. Do you experience night sweats? I sleep in spurts. My energy level comes and goes.
I've tried Immovane, prescribed by my doc, but I became reliant on it and then it lost its effectiveness, which is always the problem with sleeping pills.
As for Lomotil, I felt plain weird on this drug. It is a narcotic. I just couldn't handle it for some reason.
Since the Entocort has kicked in I've noticed that my vision is a little less sharp. I also feel the urge to pee, but when I go I don't really put out much. My joints/muscles are a little sore too. I don't know if all this is typical. From what I've read, I'm guessing it is.
I've also noticed that I'm feeling at a low ebb. Maybe the Spring air will help.
I'm on medical leave, so I don't have to worry about getting up and facing the day without sufficient sleep.
How about you?
Sweet Dreams my friend.
Cheryl
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greengirl78
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Post by greengirl78 »

Hi Cheryl,
I'm sorry to hear the Entocort has caused the opposite for you. I have been experiencing the night sweats, and sleeping is still a major issue. I have a hard time falling asleep (it took four hours the other night, even after taking 2 tylenol pm's), and sleep very lightly. I used to be a heavy sleeper. I haven't tried a sleeping pill, and am holding off until Monday to call the doc, as the Entocort seems to have stopped working over the past couple of days. I'm hoping it's just a passing thing...
Yeah, I felt weird the first few days I used the Lomotil, but it worked. After day 3 I didn't feel nearly as spacy, or out of it, and it worked; unlike the Immodium.
Sorry it took so long to get back to you. I hope things are improving, are they?
Sleep well. :smile:
greengirl
If we are peaceful, if we are happy, we can blossom like a flower, and everyone in our family, our entire society, will benefit from our peace. - Thich Nhat Hahn
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Post by ccruicks@shaw.ca »

Hi GreenGirl,
I think I managed a total of 3, maybe four hours of broken sleep each night for the last three days and boy am I bushed!
The pattern for me so far has been to go to the bathroom after 3 days with an intense urgency. This isn't a good feeling either followed by fatigue, but better than having constant abdominal cramps and D! Long may it last, but in saying this I understand that it provides only temporary relief. Tex says that following a strict diet is he key and I'm afraid I can't do this.
Like you, the night sweats followed by feeling cold continue.
I'm glad you decided to take some time for yourself. It's difficult to function well with so little sleep.
For the last three days I have been trying 2 Entocort-6 ml. but I have not checked this out with the specialist yet.
I started Entocort on Feb.14. When did you begin?
Have you noticed a rotty taste in your mouth?
Weird and horrible affliction isn't it and it seems to stem from bad bacteria taking over.
Was it the water I drank, the food I ate, what were the triggers? Where's the research?
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Post by tex »

Hi Cheryl,

I'm sorry if something I said sounded confusing or misleading. Many members here have been able to control their symptoms using Entocort, and after a while they are usually able to taper the dose down to only one capsule per day, or even every other day, and maintain remission that way for years. Some are able to maintain control with Asacol, or one of the other 5-ASA meds, such as Pentasa, Rowasa, Colosal, etc.

It's true though, that some of the more severe cases also have to restrict their diets, in order to get control, but not everyone has to do that.

MC is known to be caused by many things, and there are probably many other causes that have not been discovered, yet. Known triggers for MC include: stopping a smoking habit, using certain meds, (including NSAIDs, proton pump inhibitors, SSRIs, etc.), various enteritis events, (including flu, bacterial infections, such as C. diff, etc.), certain food intolerances, (such as gluten). There are probably quite a few more, that don't come to mind, at the moment, but the point is, MC can be caused by many things.

Tex
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Post by greengirl78 »

Hi Cheryl,
I started Entocort on February 15, one day after you it appears. No, I haven't noticed a funny taste in my mouth, fortunately.

Have you been able to gain some relief from the C? Have you talked with your specialist about cutting your dose down?

I am still toying with the idea of calling the doc regarding the insomnia. I know they could give me something to help with it... but I am not really into taking pharmaceuticals. (other than the Entocort at this point). I am hoping that I will adjust naturally and find some sleep soon.

I too have not changed my diet much. Prior to being diagnosed I had cut all dairy out of my diet, as lactose intolerance has been an issue for me, on and off my whole life. I substituted with soy milk, which after the first week wasn't so bad. I don't eat much red meat - the constant stories in the news regarding recalls and mad cow (here in the US) have scared me away. I have thought about trying to cut gluten out, but I think that's a huge step. First I want to adjust to the Entocort, and see where that leaves me. I am amazed at the research everyone here has done regarding gluten intolerance and MC, but right now I think it would be too much for me.

I have to try too hard to keep weight on. I lost about 10lbs throughout my flare, and have noticed that a few more pounds have disappeared over the past week. I only weigh 105 lbs at 5'2", so I don't have much to spare.

I hope things are looking better for you. I know this can be frustrating... and switching from D to C must be a real pain in the...(no pun intended)

greengirl :smile:
If we are peaceful, if we are happy, we can blossom like a flower, and everyone in our family, our entire society, will benefit from our peace. - Thich Nhat Hahn
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