Hello everyone - New here

[greengirl78]

Hi,
I want to thank you all for the wealth of information you provide on this board.

I would like to give a brief introduction, so you all know a little about me.

I am 29, and happily married to one of the sweetest, most caring men I know. I work in retail, and had been experiencing awful D, joint paint, abdominal pain, and fatigue since July/August of last year, however, I didn't get health insurance until January 1, 2008, so I just lived with it until then. I had tried modifying my diet to no avail to try and rid my body of the symptoms - lactose has been an on and off problem since I was an infant, so needless to say that's what I thought it was. I love to cook, make almost all of my meals from scratch, from mostly organic products, and couldn't figure out what was wrong. I took Aleve throughout this for my aches and pains (needless to say - I will never take that again)

Finally, the first week of January, I mentioned something to my mother about it (she is a nurse), and her and my father were very upset with me for waiting so long. Off to the PCP I went - they had me booked with a GI doc in less than a week, once all of their tests came back negative. I was put on Lomotil at this time. Less than two weeks later, I went in for the colonoscopy. In recovery from the colonoscopy the nurse told me that everything looked fine - and I felt like I was absolutely nuts, and all the health care professionals thought so too.

I received a phone call at work Thursday, and I was diagnosed on 2/14/08, and started on Entocort yesterday.

I have read a little about people's experience with Entocort. I am only on my second day, however, yesterday I had awful awful D about 30-45 minutes after taking my first dose. ( I had taken a dose of Lomotil with it as well, the GI doc said to keep taking it until I started to feel better on the Entocort). I know my body needs time to adjust to the new meds - but I want to make sure this isn't some form of allergic reaction. Has anyone else had this experience?

Thank you all again for being here, and having this board - as it is very difficult to find any info (even on line) on microscopic colitis. I will continue to peek around.... and thanks again.

[starfire]

greengirl78

I know you must have had quite a time working in sales and having a problem like this. I'm glad you were able to get a diagnosis quickly.

I don't know how long it should take Entocort alone to improve your symptoms. Others here have started off immediately with Entocort so I'll wait for their comments.

Don't be shy about asking questions. Lots of help available here.

Hang in there. I'm sure things will improve for you.

Shirley

[Polly]

Hi greengirl78!

So glad you have joined our family! Also glad to hear that you have a diagnosis and have started treatment. You are on your way back to health. YAY! Here you will find everything you ever wanted to know about

Are things settling down now on the Entocort? I would be surprised if you had an allergic reaction. Usually that means a generalized problem with itching, hives, and sometimes breathing. With just diarrhea (D) I would keep on taking the Entocort to see what happens.

A 29 year-old who cooks from scratch! I can't believe it!! I thought GEN Xers were known for the fact that they do NOT cook - that they eat carryout for most meals. LOL! You are indeed unique among your peers. I am impressed.

Looking forward to further chats. Ask any questions you have - there is no way you can shock or embarrass or disgust this group. Promise.

Love,

Polly

P.S. I love your quote. TNH is one of my heros.

[Mars]

Welcome to our family!

We have such collective experience here that I hope you find answers to all of your questions.

Good luck in your treatment - fine-tuning may take some time but you will get there!

Mars

[ErinD]

Welcome!

I have pretty much the same story as you and i have been sick since July of last year as well.

I have been on Entocort for 5 weeks now. The first two weeks i felt GREAT!!! the past 3 weeks, back to square one. Also received test results back showing Gluten Intolerance so i am starting a gluten free diet to see if i get any other relief.

You are not nuts or alone (even though many professionals may say that!) so don't dispair. This board has been wonderful with all of my questions and the information is just endless.

As for the Entocort my doctor told me that i would see a difference within 3 weeks.

Mine was just the opposite and now my doctor is going through a whole bunch more of tests to see what is going on. We shall see!

[mini]

Hi Greengirl and welcome

This is my 4th week on Entocort and so far no problems at all, within 48 hours my BM's were fine the only side effect was the first 2 weeks when I had headaches everyday but, that seems to have eased back now.

I have to say it does seem to be working well for me I am feeling a great deal better than I was although not 100%. Hope you feel better soon and let us know how things go.

Take care

[tex]

Hi Greengirl78,

and welcome aboard. Wow! You are tough to be willing to put up with those symptoms for so long before going to see a doctor. I understand, though, because the cost of medical help is almost a crime these days. It's a shame the way our health is virtually at the whim of some insurance company, (typically, a cold-hearted insurance company, at that).

Probably, your reaction yesterday, after taking Entocort, was just a coincidence. Since Entocort is encapsulated to become activated only after it reaches the ileum, (the lower third of the small intestine), and the colon, it shouldn't have even been available that soon. Additionally, diarrhea is not listed as one of the common side effects of Entocort. (Common side effects are considered to be any side effects that affect five percent or more of patients participating in a trial.)

If that continues to happen each time you take it, though, you may need to consult with your doctor. Success rates with Entocort are in the 60-75% range, depending on the dose, so it's not a a sure thing, but our experience here has shown that it's probably the best choice of meds that are available to treat MC. We're all different, though, so if something doesn't work, we just have to try something else.

Please keep us informed of your progress, since we learn form each other, here. Good luck with your treatment program, and I hope that you soon have your life back.

Tex

[JJ]

Glad you found us! I take Entocort and it has worked very well for me. Hope things have started to improve for you.

Hang in there!

JJ

[annie oakley]

Hi GreenGirl As everyone else says. Glad you found us and sorry why you had to. This is a great place to be. Everyone here has something to add or a different way to handle things.
Hugs Oma

[sunny]

Hi G G....I too am new here and have found it to be a wonderful sustaining place,; these folks are very inclusive and just FULL of info!!

I have been on Entocort for 4 weeks and have done well; results in 2 days. However, have had a few "accidents " this week that I attribute to food ooopsies. Have had 2 good days since a bad day on Thurs so that is encouraging.
Hang in there...you have come to the right place.

WELCOME!!!

[Pat]

Welcome, Greengirl78,

I am now on Prednisone and hopefully in a few weeks or months will be on Entocort or something like it. I am also eating gluten free, dairy free, soy free ( because of Enterolab results) and fructose free ( after hydrogen breath test) . This is a very frustrating disease but with this board at least you know you are not alone and can "talk" to others who have walked in your footsteps or at least something very similar.

Pat

[greengirl78]

Day 2 on the Entocort was a bit better. D not quite as bad. I am having some left side abdominal pain... but I will give it time.

Has anyone here tried an antispasmodic? For those of you on Entocort - do you have to take other meds as well? My PCP gave me Lomotil, and wants me to start on Celexa (yuk) an antidepressant for stress and anxiety. I don't think I want to take it though. I don't really like taking meds.

Polly - about the cooking - I have an unfair advantage. My father is a chef, and had me in the kitchen at a very young age... so cooking is second nature to me, thanks for the compliment!

Tex - thank you for all the info, I have been having a hard time researching this on the internet. You really seem to know your stuff!

ErinD, mini, JJ and sunny - thank you all for your experience with Entocort. Wow, it sounds amazing that all of us are so newly diagnosed... but the fact we are all on the same drug gives me hope that we should all see good results. I have been very faithful about no lactose in my diet for the past 7 weeks. I have felt a bit better modifying my diet that way, so I have decided to stay that way for a while.

Is a gluten sensitivy extremely common in cases of MC? I was tested for celiac prior to the colonoscopy and it came back negative. My GI doc told me it was very common in people of Irish descent (which I am). A sensitivity to gluten won't show up on the blood test, right?

I don't know if it will help anyone... but the docs asked me how I was able to stay so healthy with all of this going on. The only answer I could come up with was the fact that I make huge pots of homemade soup every weekend, and eat them throughout the week. Soup seemed to be the one meal that didn't disagree with me.

Thank you all again for such a warm welcome. This place is wonderful.

[tex]

Thank you for the kind words. We appreciate your generosity. Since I haven't taken those meds, I'll let someone else answer your questions about them.

Concerning your questions about gluten sensitivity, and the classic celiac blood tests, here's what Dr. Fine says about them, (as you may already know, Dr. Kenneth Fine is a GI doc who actually has MC himself, and who has devoted his life to researching it. He also founded Enterolab, and developed stool testing for antibodies, a method that is much more sensitive than the blood tests that are in use today):

Although not the cause of the colitis, per se, the reaction to gluten by the immune system can perpetuate or reactivate the colonic inflammation. Because of this chance of relapse, and because Pepto Bismol is still a drug with at least the potential (albeit rare chance) for side effects or reactions to the dyes, etc., I recommend testing for gluten sensitivity and a gluten-free diet as the first line of treatment for microscopic colitis. This appraoch has brought more relief to the sufferers of colitis than any other form of treatment to date. It must be stressed that because the reaction to gluten by microscopic colitis patients is usually not fully developed celiac disease, blood tests for antibodies to gliadin and tissue transglutaminase (the diagnositc tests for gluten sensitivity) are routinely negative.

He also goes on to say this about the source of the inflammation, and the use of probiotics to help control it:

Because it seems clear that the colitis stems from the organisms living in the colon, my latest studies have implemented steps at trying to rid the colon of these immunogenic strains of bacteria, replacing them with the good bacteria mentioned above. In general, good bacteria in this context refers to Lactobacillus species. The best way to impart this favorable effect on the bacteria of the colon is by dietary manipulation and supplementing with a Lactobacillus supplement.

Note, however, that there is a major problem in finding a probiotic that is not lactose based. Many/most of us are also lactose/casein intolerant, and experience problems with many of the probiotics on the market. The last word I heard on the subject, (a year or so ago), was that Dr. Fine was not willing to recommend any particular brand/version of probiotic, because he couldn't locate one that he was satisfied with. Maybe that has changed, (or will change), due to the many new probiotic products being introduced into the market these days. The quotes are form this site:

http://www.finerhealth.com/Educational_ ... ensitivity

I definitely agree with you about the benefits of soup. I ate a lot of soup, while I was recovering.

Tex

[Mars]

I have an antispasmatic "Librax" on hand to use when needed.

I pulled this from the web:
Librax is used, in combination with other therapy, for the treatment of peptic ulcer, irritable bowel syndrome (spastic colon), and acute enterocolitis (inflammation of the colon and small intestine). Librax is a combination of a benzodiazepine (chlordiazepoxide) and an antispasmodic medication (clidinium).

I have spastic colon along with the MC and it does help most of the time. While doing my colonoscopy, it was noted that my colon was spasming quite bad and I was put on the Librax right away. As a matter of fact, the very first colonoscopy was not complete due to the spasms. I had to be rescheduled within 6 months.

Mars

[greengirl78]

That sounds awful to have to go through a second colonoscopy. Yikes.

Is spastic colon different from MC or a symptom of it? I am so sorry to hear you have to go through that much discomfort and pain. Have you been able to control it?

I have these awful cramps/pain that aren't going away and was thinking of calling the doc about it on Tuesday. I was up most of the night for the past two nights, with cramps/pain and D. I usually sleep at least 8 or 9 hours... so I wanted to touch base with the doc as to what he may be able to suggest to help with this.

I know I have to be careful of the herbal supplements I take while on Entocort. I used to take a Valerian Root Tincture when I couldn't sleep.