New here - what a great forum!

[Dewey]

Recently diagnosed with CC and found this site by searching Google. Thus far, I have read most of the newbie info there sure is alot to digest (pun intended!) here!

A little about me, I'm a 51 year old male. I was diagnosed with Celiac Disease about 7 yrs ago and have been GF and healthy ever since.... until last October. Out of the blue (well ok, a little stress thrown in for good measure), I started getting the big D again. Finally got in to see my original Gastro doc a few weeks ago, and this past week, he did a colonoscopy and gastroscopy. The biopsies gave him the info he needed - I have CC.

As someone new to this condition, I'm sure I will have lots of stupid questions (I hear those are allowed here ), but for now, I just have one... My doctor immediately prescribed Entocort. I was a little reluctant when I heard it was a steroid, but then I got over the top reluctant when I found out the price! YIKES!!! So my question is this: Does it seem a little odd to you all that he would go for this treatment right out of the gate? I would think you would try less drastic measures first - especially after reading some of the posts on this site and finding out it might be possible to treat with diet, lifestyle changes, over the counter meds, etc.

I plan to call my doctor later this week and inform him I am not going the Entocort route (at least not for now) and he should come up with plan B. I look forward to hearing your thoughts and advice. In the meantime, I will keep pouring thru the info on this great site.

Thanks!

[grannyh]

Doctor's don't necessarily think of the cost of drugs.. the cheapest drug is prednisone... but it is also the most dangerous. I have a friend whose doctor won't prescribe entocort... even though entocort is the treatment of choice for most gastro docs now (according to my gastro doc).

There are some other threads here about generic entocort.. I haven't tried it..but the price sure is reasonable on that site.
grannyh

[tex]

Hi Dewey,

Welcome to our internet family. As GrannyH mentioned, Entocort is arguably the safest "effective" medication available for treating MC. Entocort EC is enteric-coated, so that it does not become activated until it reaches the ileum and the colon. Because of that, only about 10 to 15 % of the active ingredient is absorbed into the bloodsteam, thus greatly reducing the risk of the side effects that are normally attributed to the other corticosteroids.

However, if you don't want to use a drug, many of us here control our MC by diet alone. Most of us are intolerant of gluten, (which you've already eliminated from your diet, I would presume), and dairy, and about half of us are sensitive to soy and all it's derivatives. Some members have other intolerances, of course, that they have to avoid. Of course, the GI docs insist that diet has nothing to do with MC, (but then they also insist that there is no such thing as non-celiac gluten sensitivity, and they are wrong about that, also).

Be aware that certain medications can cause MC, and in some cases, just eliminating those drugs can bring remission, without additional intervention. Drugs that can cause MC include, (but are not limited to), NSAIDs, PPIs, SSRIs. Stopping a long-term smoking habit can also cause MC, but in that case, unfortunately, resuming smoking will usually not bring remission.

The biggest problem with GI docs prescribing Entocort, is that they almost always prescribe it for 6 to 8 weeks, and when it is discontinued, the symptoms return. GI docs seem to be slow learners, when it comes to treating MC. It normally takes about 6 months to a year of treatment with Entocort EC, (along with the diet), in order to bring stable remission. Of course, without the diet, the drug must be taken indefinitely, but the dose can be reduced to 6 mg, and in many cases, 3 mg per day, or every other day. Strangely, the GI docs seem surprised, when the patient relapses, after a 6 or 8-week treatment regimen is ended. I can't help but wonder how many times they will have to go through that cycle before they stop pretending to be surprised.

Again, welcome aboard, and please feel free to ask anything that comes to mind. There are no stupid questions about MC, by the way. It's a tough disease - there's no cure, and it can be very debilitating, but the symptoms can be controlled, so you can definitely get your life back.

Tex (Wayne)

[Gabes-Apg]

G'day Dewey
warm welcome from down under in Australia

I too was recently diagnosed (Dec 09) so i am still wandering through the MC treatment maze. The wonderful people on this site have been amazing. Had I not found this site and had the ablity to discuss bubbly bum gas, poop, and all the other stuff relative to transitioning to a life managing the Diarrhea Demon, then I think i would have just given up and curled up in the fetal position months ago....

as you will see from reading the various posts, there is no one right way. All of us are different, what triggers a flare for one person doesnt affect another and what treatments (meds / diet / natural) work and dont work varies greatly.....

being well researched and informed and taking a self management approach is also a worthwhile investment of your time.

good luck with the adjustment....

take care

[JLH]

Dewey: I'm glad you found us.

I am one of the PP who is treating my MC by diet alone. I only took Welchol after diagnosis. I eat a very limited diet.

I know there is a lot to read on this site. You can also use the PP search feature not the one that says GOOGLE.

[Stanz]

Welcome, Dewey,

I was also prescribed Entocort after my dx w/MC (both types) last Oct. My reaction was exactly what yours is and I am also one who has treated my MC w/o steroids. I know they have worked for many people, but my impression is that they are also problematic for many people here, hard to wean off of and very expensive, although my insurance would have paid for it - won't pay for the glutamine or the ProBoulardi - go figure.

So, what I did, working with my ND, we came up with a plan where my principal med was L-Glutamine powder. I have posted my protocol on here several times. It has worked beautifully. My D stopped w/in 2 wks and I had had chronic D for over 2 years and had lost 40 lbs. I started out with 6 rounded tsp. of the Glutamine (2 tsp/3xday), 2 lotramine 2x/day, 3 Vit D3, 1 ProBoulardi and 2 probiotics, 1 sublingual B-12. I now do 1 rounded tsp. of the Glutamine and all the rest except for the lotramine, which I think I used for only about 8 wks.

Connie

[ant]

Welcome Dewey,

Entocort (and now the generic Budez CR) has, along with a GF, DF, SF, legume and nightshade free diet, been my saviour. I am not 100% and still not weaned fully of meds, but 10 months on I have a life - which I sure did not have when I first came to this site.

Best wishes on your journey to remission, Ant

[Stanz]

Dewey,

With all due respect for others here who have gone the Entocort route to treat their MC, and I am certainly not in a position to judge anyones decision for treatment - as we are all different in genetics, age, etc.- I just believe that it is at least worth trying to treat MC w/o steroids and with diet and nutrients first. If that doesn't work, then the steroids are always going to be an option.

This has been a lifelong battle for me. I am 61. I've had real symptoms since I was 9. 15 years ago I was dx with RA (in my medical records) even though I tested negative for it. I was prescribed Methotrexate. I refused it based on research. You would laugh to read my medical records and the comments made by my Rheumatologist - who is in the "Top 100 Docs" in my area, who noted on my charts that I was "uncooperative" that I had "promised to consider taking the medication", that I would be "physically unable to continue to function w/in 5 years" if I didn't take Methotrexate.

I have an extremely physical job, I lift heavy equipment on the job every day, I basically set up a portable kitchen daily with equipment I unload from my van and I cook breakfast for film crews and take care of them all day. It is like setting up camp every day and my days are LONG.

I have had NO arthritis symptoms since I have been GF since last August. I was dx w/MC in Oct., got my genetic dx with GS in Dec. So, how much damage would I have done to my organs by taking a drug that is known to damage organs if I'd been taking Methotrexate for the last 15 years, when all I really needed to do was stop eating G? I have 2 grand-nieces w/Crohns who are taking major drugs for it now. They are both under 25. I have a dear friend whose life was destroyed by Prednisone, she is 45 and can barely walk, is on SSI and severely depressed. I am still getting Prolotherapy- now only 3x/yr - to treat the joint damage that occurred while my auto-immune response was reacting to gluten, and it is the best $ I ever spent. Again, my insurance would have paid to do a trapeziectomy and all the PT afterwards, but it won't pay for the Prolo that has stopped the pain.

I fully recognize that I am likely one of the most angry here about Western Med. and all the ways it has failed me, but all I know is that if I'd not taken charge of my own health over 15 years ago, and refused to be drugged to death, I'd be majorly screwed now. When you read the list of complications a drug can do to you - you really need to take it seriously, IMO.

Connie

[Dewey]

Thanks all for the encouraging words - and sorry it has taken me so long to reply back. Part of the issue with my health is most likely related to stress at my job. I have been working 50-60 hour weeks for months. Hence why I haven't been on here for a few days. Even though I am still working long hours, I am very proud to say that I have been able to condition myself not to get so uptight about things at work. Life's too short, right?

Anyway, I have been actually doing pretty well the week and a half since my scopes. Have also started watching what I eat and am back on here tonite to read and learn more about what to watch out for. I did not call my doctor back yet because I want to try my method for another week or two to see how I am doing first. That way, I will have some concrete evidence to present as to why I do not need the Entocort.

Again, thanks for the replies. I'm sure I'll have more questions as time goes by, and so it is great to know there is this resource with you great people here to help me out!

[grannyh]

I did things my way for several years. I had some success with the diet too. Then we had an evacuation for a hurricane and I found myself in a car for something like 27 hours with nothing to eat. We finally got to our destination and I was able to live on canned chicken and tuna (both packed in water..so additives). Not being able to cook or get many of the foods I was used to had my stymied... After that I agreed to try asacol.. made me sick as a dog.. then I gave in to the entocort... have been on it ever since. I was on three pills a day for over a year.. never thought I would get to two pills a day let alone one.. but I am at one a day and at times have forgotten to take the daily pill with no relapses of D.

Having a doctor who let me find my own way was essential... :)
granny

[MaggieRedwings]

Welcome Dewey,

So happy you found us and believe me since I am one of the old timers here, this is the best information site on the web for this disease. I am one of the ones here that control my MC by diet alone. I hae done all of the pills but Entocort was the only thing that helped but I incurred significant side effects from it. Stick with us and no question is out of line here regarding your disease.

Stanz - I am right there with you on Western medicine.

Maggie

[Stanz]

Thanks, Maggie.

[Olivia-Micro-Colitis]

Hello and welcome to our Family! i got my diagnosis on a phone message. He told me i had LC and that he special ordered my medicine and i should pick it up in a week. He said it was called entocort and i had to take it 3 times a day...that was it! lol So i wouldn't worry too much!
-olivia

[Dewey]

Well, I was doing pretty good until yesterday.... which was a MAJOR stress day at work. I have already taken some actions to reduce the stress levels at work. No job is worth getting sick over.

So I do have a couple of questions... First, does CC occur in any particular portion of the colon? Is it limited to the colon? Can it also appear in the small intestine? Secondly, I would like to list what I am taking for supplements and welcome any and all input on anything which may aggravate my CC:

New Chapter Mens Once Daily vitamin
New Chapter Prostate 5lx
Source Naturals Betaine HCL with Pepsin
Source Naturals Glucosamine and Chondroitin
Twin Labs Essential Fatty Acids
Twin Labs Complete EFA

Oh and I have read here that many are taking L-Glutamine. What are the benefits of this with respect to CC? Thanks!!!

[tex]

Technically, (by the official medical definition, since the term "colitis" is specific to the colon), it is impossible for MC to be associated with any part of the GI tract other than the colon. In the real world, though, CC can affect any part of the GI tract, from mouth to anus, (similar to Crohn's disease), and in fact, when biopsy samples from other areas of the GI tract are examined under a microscope, the markers of CC can often be found in the small intestine, the stomach, and probably in the esophagus, (though I don't recall seeing any research reports specific to the esophogus). MC, (CC, and LC), was incorrectly described, when it was first defined, and in the field of medicine, disease descriptions seem to be chiseled in stone - never to be corrected. Obviously, if the small intestine were not involved, it would be impossible for us to have malabsorption problems, and yet for many or us, it's a major problem.

The inflammation pattern that characterizes MC, typically occurs in "splotches", of various sizes and shapes, throughout the colon, but it tends to be most predominant in the ascending colon, (the proximal colon), for most patients, though scattered evidence can usually be found in all sections of the colon. This distribution pattern lends itself to missed diagnoses, if a GI doc fails to take enough biopsies, or if he or she fails to take them from optimal locations.

Actually, if you are awake and alert, during a colonoscopy, you can see those inflamed areas on the scope monitor. Many GI docs believe that all evidence of MC is totally invisible to the naked eye, but they just don't know what to look for. Dr. Fine first described those "splotches" years ago, and they are visible as a slightly darker shade of pink, against the light pink background of a normal colon. I could see them during my colonoscopy, but I didn't even realize what they meant, back in those days. My GI doc didn't know what they meant, either. When I asked him about them, he shrugged and wrote them off as areas where a previous infection had probably occurred.

Unless you are sensitive to soy, those supplements shouldn't adversely affect your CC. I haven't tried any of those brands, though, so I'm just going by their label ingredients.

Tex