My medicated MC experience

[Missing Healthy]

Hello
I've lost faith in finding answers on the internet months ago, but when in pain sometime it helps to talk to people that can relate. Skip to the Help section if you'd rather not read my life story.

History
I am a recovering oxycontin addict, clean 1 year 1 month and 5 days. I started experiencing symptoms from microscopic colitis 1 year 1 month and 5 days ago. I quit cold turkey so I assume the stress from opiate withdrawal (I quit cigarettes at the same time so nicotine withdrawal as well) made my colon angry. And yes, it was very difficult to kick a pain killer addiction whilst in constant pain. Worst part was knowing in the back of my head that oxycontin would most likely stop my D.
It started with vague pains in my gut area and eventually frequent loose BMs. This led to a colonoscopy, endoscopy, and a gauntlet of blood and stool tests. After 7 months of testing they finally found erosion in my stomach and microscopic inflammation in my colon. End testing chapter of this story, begin medicating.
Started with Asacol, 4 days in and horrible pains in 'kidney area' forced me to stop. Next was Apriso. Same horrible pain, but much more mild so I would take it for as long as I could, then stop, recover, and start again. Eventually my body learned to tolerate it and I took it for a while. Stools became more solid and a little less frequent. Then I reached a plateau and stopped improving. So back to my doc for more pills, now its Entocort and I am almost caught up to present day. Took just entocort alone for a week, worked great. Tried to reintroduce Apriso with it because logically they would work doubly good. Nope, they seemed to cancel each other out, I went back to worse, so I cut out Apriso again.

Present
So Im still on my first month of Entocort. The first few days after dropping Apriso were good, still had symptoms, but they werent as messy or frequent. Now for some reason Im going back downhill fast. My D is not getting worse, but a lot of other symptoms that I havent felt since before I started taking medicine are returning. Gurgling 'stuck' pain on my front left chest. Aches and pains in back. Areas of my skin hurt to gently brush with my finger, feels raw or tender. Hurts worse if you poke it hard. Then on top of these strange pains (that I already know my doc will not be able to treat) I have the side effects from Entocort: insomnia, nausea, headaches, weak and tired.

Help
If my doc gives the Okay to stop Entocort Im going to try new things. Already did the gluten diet and had gluten blood tests and biopsies, all were negative (thank you Jesus) so I wont be doing that again. I have great respect for you people that can manage a gluten free lifestyle, I can honestly say quitting heroin was easier.

So, Im going to take a multivitamin and try to increase fiber. This an safe decision? Anything else I can add to that?

One last question for you lucky people who have experienced remission. What does it feel like? Does remission mean your regular like you were before the disease? I went from having 1 (sometimes 0) normal BMs a day to 4-8 loose a day basically overnight when the disease kicked in. Can I expect remission to be my old normal?


Thanks for listening
~ Missing Healthy

[MBombardier]

MH. Glad you are here. I was addicted to drugs in my 20's and I can totally identify with thinking that sometimes drugs are easier to kick than other things. I am blessed to be able to control my MC symptoms with diet. If I stay away from gluten, soy, and corn, my gut is a happy camper. And for me, that means returning to pre-MC habits, although the color of the output still indicates that the giant is only sleeping.

You are going to hear that going gluten-free is the first line of defense (or attack), and there is a huge amount of research to back that up. We have all fought against giving up gluten to one extent or another. Sometimes it seems like a death, and there is a real grieving process involved. But I can tell you from eight months down the gluten-free road that it is so worth it to feel energetic, to sleep all night, to have minimal (sometimes no) pain anywhere, from gut to joints, to have my brain back, to not be nauseated, to not have to be stuck in the bathroom, at home or in public.

My blood tests for gluten sensitivity were negative, and even my stool tests were negative. But I have two genes for gluten sensitivity, including one for celiac. If I had never come down with MC, I would have never have know that, nor how good I would feel when I removed gluten from my diet.

I urge you to spend time reading the wisdom available on this board. These are some of the most caring people I have ever had acquaintance with in my life. They will cry with you, rage with you, laugh with you, love on you. Welcome.

[ant]

Welcome, Missing Healthy,

I am sure other will be along soon with help, ideas, advice. I just have two thoughts:

A negative blood test in no way proves you are not gluten intolerant.

If you have MC do not increase fiber. In fact do the opposite. Decrease fiber. It aggravates an already aggravated gut.

I encourage you to read everything on this board. Here there is more knowledge and real experience of MC than anywhere else on the planet.

Best wishes on your journey (which may be long and twisting) to remission. ant

[Foxnhound8]

Hi MH

I have not been here for the last couple of months. I do not have your problems with drugs, but can identify with the other stuff you have going on. I did the Entocort/Apriso therapy for a couple of months and was barely under control with D. My doc discontinued the Apriso and I had D intermittently for a few weeks. I am now on Entocort only and after 3 months find my insomnia is gone and the headaches are manageable. The D is well under control and I am down to 2 Entocort a day with missing a dose once or twice a week. I too have an issue with the whole gluten free thing but now that I have had a few months of feeling fairly normal, I am thinking about trying the gluten free thing again to see if I can get off the Entocort completely. As Ant has said, the journey is long and twisting. Keep trying the suggestions here. The one thing I can tell you about getting under control with diet for me was/is chicken and rice. Any time I get out of control, I just go back to eating chicken and rice for 4 or 5 days and that cools everything down. DON'T ADD FIBER to your diet. It is too hard on your gut right now. I know it feels sooooooo wrong but you need to give your gut a break and give it easy to digest mushy food for awhile.

Foxnhound

[sarkin]

Welcome, MH.

It sounds as though you've already done the hardest thing. Congratulations on being over one year clean - that is a huge accomplishment. If you can do that, I believe you can get your MC under control.

In addition to the advice about staying away from fiber (at least till you're more healed) - I wouldn't add a multi-vitamin right now. There are so many ingredients in most vitamins, other than the vitamins themselves. Freeda is a brand that is free of most known food/ingredient irritants. I am taking a B-vitamin complex from Bluebonnet, also good for ingredients, plus additional B-12... I would add things slowly - one at a time, over weeks as opposed to days. I felt much better when I dropped my previous B-vites - who knows whether it was the binder or the coloring or the filler.

You may *not* be sensitive to gluten, since your original MC episode was brought on by the 'crisis' of quitting oxycontin (and cigarettes - others have had MC show up after quitting smoking... how is that fair??). If that is the case, then when you are more healed, you may not need to figure out your diet. As you've gathered from earlier responses, that seems to be the exception here. It does seem possible that you are eating something that's preventing the Entocort from getting you where you hope to go (and gluten is the number one suspect, but may not be your culprit). Previous posters are correct that the tests that showed you have no problem with gluten are notoriously inaccurate (not 'sensitive' to a large percentage even of celiac patients).

And - I agree, gluten is ferociously addictive ;) I bet you'd get more support from the general public in quitting narcotics than pizza. People seem quite flipped out about the very idea. Pretty interesting. I know for sure that I never eat gluten again (nor dairy), and suspect that a lot of people who think they can, actually would be much better off without it. I have a couple of friends who are 'walking time bombs' of autoimmunity, and absolute connoisseurs of when to take Prevacid versus Pepto - liquid or chewable for different symptoms... before I was sick I never owned *any* of those. (What's wrong with this picture?)

Like others who've responded to you, I've had resolution of a number of symptoms that I was not attributing to diet, after I "fixed" my diet. I went pretty hard core from the beginning, because I was desperate to feel better, and couldn't wait to decide whether it was dairy or gluten or something else. (Lots of homemade chicken soup.)

I really hope you start to feel some returning health. The hard work of recovery deserves some reward of feeling better. It's possible that gluten isn't your personal poison (though you'd be in the minority here - that is still possible). You might still try a super-soothing diet for just a few weeks, to stop the misery and get your strength back.

Wishing you health and some relief,

Sara

[tex]

Took just entocort alone for a week, worked great. Tried to reintroduce Apriso with it because logically they would work doubly good. Nope, they seemed to cancel each other out, I went back to worse, so I cut out Apriso again.

You're not the only one who can't grasp the logic of that dilemma, (most doctors don't realize/understand it either), but it's a fact that taking two meds at once does not double your odds of seeing improvement of symptoms. In fact, taking two meds at the same time roughly triples your risk of failing to derive any benefits from the treatment. The reason for that is, (as you pointed out), if you have an adverse reaction to one of them, the other will not be able to overcome the adverse reaction to the other one, so that doubles your odds of having an adverse reaction, (since you could have an adverse reaction to either one). The "roughly tripling" of the odds of an adverse reaction comes from the fact that you could also be the victim of an adverse reaction to an interaction between the two drugs, (which is much more common than doctors will admit). Because of that, IMO, any doctor who prescribes two drugs in tandem, to do the same job, doesn't understand mathematics, and does his or her patients a disservice.

Since oxycontin is not a known trigger for MC, (but stopping a long-term smoking habit is), the odds strongly point to stopping smoking as the probable cause of your MC. Nicotine is protective of ulcerative colitis and MC, (but not so much for Crohn's disease). Of course, your doctors are not likely to tell you that, since smoking is a social, (and medical), faux pas, these days. Unfortunately, resuming smoking will not reverse the development of MC, because once the genes are triggered, the condition is permanent.

Also, when the genes that predispose to MC are triggered, for the vast majority of us, the genes that predispose to several food sensitivities are also triggered. That's why we suddenly become sensitive to gluten and casein, and about half of us become sensitive to soy, (and most/all legumes). Some of us develop other food sensitivities, as well. As Sara pointed out, there are no guarantees that you are sensitive to gluten, but the tests that you had to rule it out are pretty much worthless for detecting the type of gluten-sensitivity that we have. The stool tests offered by Enterolab are the only reliable way to determine non-celiac gluten sensitivity, (except for a long trial and error testing process).

Many members here use a combination of diet and Entocort, in order to facilitate achieving remission. The Entocort usually won't totally control our symptoms, but it will allow for minor dietary errors, without relapsing back into a full-blown flare.

In order to achieve and maintain remission by diet alone, all food sensitivities must be eliminated from the diet, 100 %. Partial diet eliminations may help symptoms, but for many/most of us, until every trace of those foods are eliminated from the diet, the symptoms, (of which diarrhea is only one of many), will continue. That might sound formidable, and intimidating, at first, but if you can kick a drug habit, and kick the nicotine habit, you are certainly capable of kicking the gluten habit, as well, (and any other food sensitivities that you might have). It ain't fun, but neither is being sick all the time.

And yes, you can indeed get your life back, and return to a normal pattern of bowel movements, and eliminate all the other symptoms, including some that you may not even realize that you have, at this point. Reaching stable and sustainable remission from this disease is almost like being born again - you will never experience a more exhilarating feeling. It's a hard-earned victory, for most of us, but it is soooooooooo satisfying to be able to conquer the disease, and get your life back.

Again, welcome aboard, and please feel free to ask anything.

Tex

[Missing Healthy]

That was the most informative and supportive forum response I have ever received. Thank you very much, all of you.

You have all convinced me to try the gluten free diet again. I tried it for one month before I was diagnosed with MC and the doc was still trying to figure me out. I tried it because Dr. Google and I came to the conclusion that my symptoms sounded like celiacs disease. I felt better and better, and actually felt about as good as I felt on Entocort. Then I peaked and a few days later I was just as bad as I ever was. Maybe I just ate something I shouldnt have on accident. Well after the diet failed, and I got a negative blood, stool, (and I believe biopsy) for celiacs I just forgot about gluten free.

Took just entocort alone for a week, worked great. Tried to reintroduce Apriso with it because logically they would work doubly good. Nope, they seemed to cancel each other out, I went back to worse, so I cut out Apriso again.

Tex, this sounds promising but is expensive. Should I give it a shot? Has anyone else gotten positive results on this test when all others were negative?

My blood tests for gluten sensitivity were negative, and even my stool tests were negative. But I have two genes for gluten sensitivity, including one for celiac..

MBombardier, How did you discover you had two genes for gluten sensitivity? I was adopted so dont know my family medical history and have always wondered if some kind of gene test would answer some questions.


Thank you all again for the warm welcome
MH

[sarkin]

MH,

About the genetic testing, many of us have used Enterolab both to test for specific food intolerances, and they also offer genetic testing (a cheek swab), which lets you know whether you have one of the genes that 'predisposes' to celiac (doesn't mean you have the specific small-intestine damage that is characteristic of that condition... yet - thankfully!).

If you go to the Forum Index, there are topics where various results are compiled - both food intolerances and genetics. Also in this Main forum, you will find where people have reported their Enterolab results. Just recently, Nancy, Kelly, and I have reported our results here, and Kelly also had her daughter tested. (And forgive me, anyone else I've missed who reported test results over these past weeks.)

Many have also figured out their food issues without testing - through methodical elimination, starting with the likeliest suspects (gluten is #1, usually followed by dairy; then soy/legumes for many).

Like Marliss, I have a celiac gene and another that predisposes to gluten sensitivity, though no one in my family was ever diagnosed. This seems to be much more common than previously believed. In a weird way, I might be "lucky" to know I have to pay attention to this - I wonder whether my mother's cascading late-life health problems might not have been exacerbated by 'invisible' gluten problems.

If you felt better without gluten, and then felt worse again, you're right that some gluten might have gotten past your vigilance. It's also possible you have another food issue popping up. I hope you find your way to feeling better and healing - this forum has been critical for me in getting myself on a successful path.

All my best,

Sara

[Gloria]

Welcome, MH!

I think it's extremely encouraging that you felt better once you eliminated gluten from your diet. That likely means it's a major trigger for you and you'll respond quickly by eliminating it. If your symptoms returned after being GF, it's likely that you either accidently ingested gluten, or your immune system began fighting another intolerance once gluten was no longer an issue. That's pretty common, and the most likely culprit is dairy, followed by soy.

I am a great proponent of Entocort, if one doesn't suffer any side effects from it. I have recently stopped taking it and am finally managing by diet alone, along with an Imodium pill about once per week. I have double DQ1 genes, which predisposes me to multiple food intolerances. It has taken me a long time to determine them all. I also had the Enterolab testing and later MRT testing to help determine additional triggers.

I would encourage you to maintain a food/elimination diary, which we have dubbed "Winning the Poo." It will help you see a pattern between what you eat and subsequent symptoms.

We are here to help you, and we know that you can get better. You will get your life back.

Gloria

[tex]

MH,

Here is a link to some of the test results of other members, (which Sara referred to:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10089

The usual reason why the GF diet helps for a while, and then seems to stop working, is explained by a theory of mine. The following is strictly my theory, and is not documented by scientific research, (so please keep that in mind), but experience has shown that it seems to apply to most people who have MC:

The reason why the diet worked for a while, and then stopped working, is because the immune system usually responds to the primary offender that it is faced with, and for most of us, that is gluten. After a month or so on the diet, (this varies by the individual, obviously), the production of anti-gliadin antibodies subsides to the point where they no longer dominate the immune system, and the immune system begins to notice other offenders. That secondary offender is usually casein, (the primary protein in all dairy products). So, almost all of us have to cut all dairy products out of our diets, also. Sometimes this will allow remission again, but casein antibody production subsides much more quickly than gluten antibody production, so the "next" allergen in line will usually promptly attract the attention of the immune system, and for about half of us, that allergen is soya, the primary protein in soybeans. Many of us can stop there, on food intolerance removal from our diet, (other than foods which act as irritations, but are not really intolerances), but a few of us are also intolerant of egg whites, yeast, and possibly a few other things. Some of us have listed those intolerances in our profiles, and they appear below our avatar.

As I said, this is just a theory, but I'm quite confident that it is valid, because if it were not, the "helminth treatment" would not be almost 100 % effective at controlling the symptoms of IBD patients. The helminth treatment involves IBD patients swallowing the eggs of pig whipworms, and after the worms hatch and begin to grow, the immune system begins to concentrate on them, and the symptoms of IBD, (or any other autoimmune disease, for that matter), will virtually always disappear, and the patient will remain in remission as long as a sufficient stocking rate of pig whipworms is maintained in the intestines. IOW, the immune system always tends to concentrate it's efforts on whatever it perceives as the greatest threat, at any given moment.

Sooooooooo, when the GF diet stops working, that simply means that the immune system has begun to respond to another trigger food, which must also be removed from the diet, in order to regain remission.

Regarding whether or not the tests done at Enterolab are worth what they cost, that depends on your personal viewpoint. The same results can be obtained by trial and error dietary testing, if you have the time, patience, and objective analysis skills. For my personal opinion of the work that the lab does, see the 4th post in this thread:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=12762

The DNA testing that Enterolab offers was developed by the American Red Cross, and their price for the test is roughly half of what most labs charge for a similar gene test, FYI.

Tex