Hi I'm new here

[Goldie]

Hi all,
My name is Cassie and I have CC. In 2008 I was out having lunch with my Mum when I had to make a mad dash to the toilet, I didn't think much of it thought it was the spinach in the crepe I just eaten. Ha silly me .... about 6 weeks later and a miserable holiday I had been saving over 12 months for, my GP sent me to a GI for a colonoscopy and there you have it diagnosed with CC. Then the questions, how did I get it, how long will it last??? My GI put it down to NISADS as about 8 week prior to my first encounter with the dreaded D, I had caught a virus off my 7 year old son, and as these things go he got over the virus quickly, but when it hits adults .... well different story all together. As an adult you get the wonderful side effect of temporary arthritis. I was bed ridden for 4 days, in constant pain even unable to do up my bra. So for someone that has take nothing stronger than paracetamol their whole life; I was taking NISADs every 6 hours for about 7 days, and there you have it, this is what my GI believes bought on my CC.
I managed it with diet, Imodium (when going out for a meal), and generally just learnt to live with it! Thank goodness I had an understanding boss, as a single mother of two young children and the only source of income for my little family - I had to live with it - no choice. Then in early 2010 I was rushed to hospital in excruciating pain... gall stones caught in the duck to the pancreas which caused pancreatitis, after 4 days of nil by mouth, I then had my gall bladder removed. To cut a long story short, I went home and stuck to an extremely low fat diet and guess what my CC disappeared, and I mean disappeared after another colonoscopy there was NO sign of it in any biopsies. I was elated my GI was astounded and so I had 3 very happy years of not one sign of the dreaded D. That was until 2 days before Christmas this year. I thought no way! it was gone! even my GI was surprised. So back in for another colonoscopy; and guess what, yes its back.
Now that my kids are older I have a more demanding job and I kept thinking no way I can't half manage this again, but this time it seems worse. This time my CC has come back with major cramps and bloating - not something I had the last time. So my GI has put me on Entocort - I have had the medication sitting in my room unopened for 6 weeks trying to summon the courage to open the bottle. Remember I am the person that never took anything but paracetamol, I mean seriously look what happened when I did just the once. But today I cracked open that bottle and started my treatment - it was scary, but it's time to take control - I have way to much living to do to let this get the better of me.
I really believe when I was in hospital and was nil by mouth for 4 days, then an really strict low fat diet that this calmed down the inflammation and somehow my body mended itself for a period of 3 years.
So I am going to try what I believe worked last time (not the pancreatitis - that was worse than child birth!!), but a very strict low fat diet.
Has this happened to anyone else or am I just 'unique' ... lol

[Zizzle]

Wow, I think you are unique!
I assume your diet still contains gluten (wheat, barley etc) and dairy products? There are only a few people here who have shown complete resolution of their MC on biopsy -- and they adhere to very strict elimination diets to achieve that. Most people respond to a gluten-free, dairy-free, often soy-free diet. Some have to eleiminate eggs and several other foods that cause trouble. I have seen several MCers with gallstone issues. Not sure what the relationship is.

Welcome Goldie!!

[tex]

Hi Cassie,

Welcome to our internet family. Your GI doc is probably correct in his guess that NSAIDs triggered your disease. MC can be caused by many things, and NSAIDs are a very common cause. I apologize for raining on your parade, but I'm afraid that if you are anything like all the rest of us here, as Zizzle pointed out, you will need to do much more to your diet than simply avoid fat. Fat malabsorption is a result of poor digestion caused by the inflammation that is associated with CC/LC/MC, so fat malabsorption is a problem that is often associated with this disease, but fat does not generate the inflammation that causes the disease.

We have determined by many years of experience of all the members here, that the inflammation is caused by food sensitivities that actually trigger the production of antibodies in the intestines. These antibodies are not normally detected by the classic celiac blood tests that doctors use, because the antibodies are not in the blood — they're in the intestines. Those antibodies can only be detected by special stool tests developed by a laboratory located in Dallas, Texas, here in the States, and unfortunately this is the only laboratory in the world that is licensed to do those tests. They sell test kits for collecting stool samples, and the samples are frozen and then shipped back to the lab by overnight delivery.

Virtually everyone here is sensitive to gluten (despite negative celiac blood test results), and most of us are also sensitive to casein (the primary protein in all dairy products), and most of us are also sensitive to soy and all it's derivatives, including legumes. Once we figure out our food sensitivities and cut them out of our diet, 100 %, we usually are able to get our life back. Healing can take a long time, and while some people see improvement within a few days, for many of us, it can take several months or longer, before we see substantial improvement.

The Entocort should help to control your symptoms, but it will not heal your gut, because it cannot prevent additional inflammation from being generated by your immune system — only the proper diet changes can stop the inflammation, and allow the gut to heal. Consequently, even if the Entocort brings remission for you, the odds are extremely high that when the drug is discontinued, your symptoms will relapse (unless you modify your diet early on.)

Please be aware that some people cannot take Entocort, because it causes neurological side effects for them. For others, it simply is not effective. But for most people, Entocort is effective at masking symptoms, for as long as the drug is taken. Taking Entocort will give you time to live symptom-free, while giving the diet changes time to start healing your gut. Also please note that for some people, Entocort will not bring remission unless they remove at least the main food sensitivities from their diet (gluten, and for most, casein and soy, also). But regardless of whether or not Entocort controls symptoms without diet changes, those symptoms will relapse when the drug is discontinued, if the diet has not been modified early enough to allow significant healing of the intestines.

For many people who have drug-induced MC, just stopping the use of the drug may bring lasting remission, without further intervention. Unfortunately, though, most of us are not that lucky, and we also have to make diet changes. One thing is for sure though, if a case of MC is caused by the use of a drug, them that drug must be avoided at all times, if remission is to ever be achieved by diet, or any other means.

Also, please be aware that most GI specialists are still not aware that food sensitivities are the primary cause of the inflammation for most of us, so most of them will argue that diet has nothing to do with treating the disease (because that's how they were trained, unfortunately). We have also found that this disease is associated with gallbladder disease (it can cause gallbladder disease), and it is closely associated with pancreatitis, also. In addition, we are approximately 7 times as likely as someone in the general population to develop thyroid problems.

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

Tex

[ladyathome]

Welcome Cassie! I can't really add much except to share my experience, and tell you the best thing you can do is listen to Tex and others on this site! Search and read as much as you can here, and definitely ask questions. Finding these people has changed my life (health-wise). I do great as long as I stay gluten free, soy free, oat free, and tuna free. Those were my results from the lab Tex was referring to: Enterolab, www.enterolab.com. It was the best money I have spent! I also responded well initially to the Pepto Bismol protocol (8 tablets daily for 8 weeks).
Best wishes!

[Leah]

Welcome Cassie.
Tex has covered the basics very well. He has written a book on Microscopic Colitis that you might want to order. It's in the upper right hand corner of this page. Just click on it. It has tons of great info and insight to this disease. It's a complicated one and we all respond differently to certain foods. The food sensitivities are triggered when the MC is triggered. The Enterolab test is a good way to find out for sure.

Then there are foods that don't cause inflammation, but just aggravate an inflamed gut and can get in the way of healing. These foods can be tested back in when you feel better. These include RAW fruits and veggies,salad, acid foods like citrus and tomatoes, beans and legumes, caffeine...

I took Entocort for 6 months WHILE I CHANGED MY DIET. it was a life saver. My D stopped within days, but you can't stay on it forever and like Tex said, if you continue to eat the things that you produce antibodies to, you will likely relapse when you stop. It is also a drug that you must slowly wean off of. If it works for you, the time to cut the dose is when you start feeling constipated. The lower the dose, the more you will be able to tell what you are still reacting to.

Good luck and keep us posted.
Leah

[Gabes-Apg]

Hey there Cassie
Greetings from a fellow aussie! (ex nsw one at that! Yes I support the blues in state of origin)

I managed to get the MC under good management without the need for entocort or other steroid, I did it eliminating the major triggers and sticking to a strict (what appears bland) eating plan.
the eating plan is low inflammation, (now low histamine) gut healing type foods.

one thing that occurs often, and either kicks in and stops people from attaining remission, or can occur when you think you are in remission, is histamine, mast cells. I recommend reading that area of the website.
it happened for me after the GI said that my MC was remission. (I had requested mast cell staining for the biopsy and the report even mentions mast cells but the GI specialist would not acknowledge it as an issue)

histamine/mast cell is not just food triggers. For me it is things like visit to the dentist / any type of anaesthetic / Hair dying / dust mites.
I always take H1 and H2 blockers before these events/situations.

welcome to the group and feel free to ask questions. there is a lot of knowledge and support here....

take care

[Goldie]

Thank you all so much for the infomation - I am so in the dark here, and need as much help as I can get, and trully appreciate any feedback.

Well after 2 days on the entocort I had 2 hours sleep last night with the worst headache and jitters which made me feel so sick, is this normal? will this go away. I am at a loss and really unsure if I should take todays dosage. I am not overly keen on taking the steriod medication anyway. So I think I may make an executive decision and just stop (as I know after only a couple of days there is no tapering off involved).

[Goldie]

Thank you all so much for the welcome and information.

You are so right Tex my GI told me it doesn't matter what I eat as it makes no difference, so therefore taking the word of a Dr that is what I have been doing - then I came aross this forum, wow i have learnt more in a few days than I thought possible and its great to have people to talk to who know exactly what you are going through - as supportative as your loved ones are you need to live it to understand it.

I made a decision this morning to discontinue the entocort - I was never overly happy about putting steriods into my body anyway - but last night I had 2 hours sleep after having the worst headache I think I have ever had in my life (44 yrs) - ended up sitting on the side of the bed with the jitters for half the night and couldn't bear to put my head on the pillow cause it just made the pain worse.

So I have just ordered Tex's book (will take a couple of weeks to get to me down under!); and will start researching diets, as you all advised. I have a couple of foods that I know are a trigger like - salad, tomatoes (all the stuff I love); but our local supermarket has a great gluten free section.

I have a reasonably quite day at the office today, so will duck out later to grab some imodium and continue to read through the information on this site.

The worst thing about the entocort was even after a couple of days I was starting to see/feel a difference, anyway, these things are sent to try us

I anyone has any pointers I am really open to any input/advise you may have - actually would really welcome it.

And to Gabes - go those 'Blues'

Thank you all

[Gabes-Apg]

Cassie
if you are able to now use the search function - do a search for posts in the main message board, author me,

a couple of weeks ago i wrote a bit of summary for new people that may be helpful!

[Goldie]

Thanks Gabes

I found the piece you wrote. It was so spot on .... I am now ready to take the bull (cc) by the horns, it was really helpful and has given me the inspiration to sit down and make a plan! (I'm a plan/list type of girl )

Thanks

[tex]

Cassie,

That's a long time to have to wait for a book, but I realize it's a long way to the other side of the world, and it has to go through Customs, etc.

It takes a while to read the book, so if you would like to get a head start on reading it before the printed copy arrives, I'll be happy to send you a copy attached to an email so that you can start reading tomorrow. I can send either a PDF copy that you can read on your computer monitor, using Adobe Reader, or I can send a digital copy formatted for a Kindle, Nook, iPad, or one of the other digital mobile devices.

If you would like for me to do that, I just need to know whether you want a PDF version or a digital version, and if it's a digital version, I need to know which device you use, because they all use different formatting codes.

It's past my bedtime here, so I'll check back tomorrow (or rather later today, after I get some sleep).

Tex

[Goldie]

Tex,

I would be really greatful if you could send in PDF file - I can read it off my laptop then.

Thank you very much appreciated.

[Gabes-Apg]

Thanks tex! I would offer to share mine but it is already packed!!!!

Cassie, this is how awesome these people are!!!!

[tex]

Cassie,

You're probably sound asleep now, but when you get a chance to check out the file I sent you, please let me know if for any reason you are unable to open it and read it.

Since this PDF file is the equivalent of a digital copy, you will note that the references in the back of the "book" are live links. IOW, when you are reading in any chapter, and you come upon a superscripted number at the end of a sentence, designating a reference, all you have to do in order to view the actual text of the reference is to go to the matching chapter in the bibliography in the back of the "book", find the corresponding reference number, and click on the reference. It should open automatically.

Anyway, please let me know if you should have any problems with it, and I hope that you find it helpful.

Tex

[Leah]

Hi Cassie. I just want to add a little warning about "gluten free products". it's probably not a good idea to jump on the GF processed food band wagon right now. They have a lot of ingredients in them... any of which you could react to ( xantham gum is one of them). Try to eat real whole foods as much as you can and when it comes to packaged, the fewer the ingredients, the better. Down the road when you have your symptoms under control, you can "test" them out.

Leah