Newly Diagnosed

[smile4menow222]

Hi everyone,

I was just diagnosed with MC on Friday. Started my endocort and so far, well, still diarrhea and feeling a little nausea (maybe from the endocort?).

I have been taking NSAIDs for a while since I was diagnosed with Fibromyalgia in October. I have since stopped those... cold turkey. I know those upset stomachs and cause harm! eeeek!

I am actually taking all sorts of pills these days. I have always been told I had IBS, so I was taking Symax (Hyomax SR) for years. By the way, does anyone know if I can stop the Symax now that I don't really have IBS (at least from what I have read, if I do have MC, then it's not IBS).

Wow! As you can tell, I have lots of questions. I have a follow up with my GI doctor on 4/4, but until then, I just keep sitting at this darn computer and reading. I came upon this site today and love all the information I am reading.

Like KD, I am very active (was!). I ride my bike about 80-100 miles a week, too (did!). I haven't worked since this all hit me. Oh, this all started on February 4th, after dinner out at a really, really nice restaurant. We aren't sure if I got food poisoning or a combination of really rich food started the bug that knocked my off my a#ss. I haven't been that sick since montezumas revenge in Cancun 18 years ago. It was comin' out both ends at the same time. I would have gone to the emergency room, but I was too messy (if ya know what I mean)! I was in horrific pain that night. My daughter and hubby said I was screaming in so much pain. Wow!

So, after that incident, I have not had a solid bowel movement and was tested for gallstones (ultrasound and HIDA scan), stool samples, blood samples... everything, finally the colonoscopy found the MC.

I love all the info here, although, it's very confusing. MC is different for everyone, isn't it? At this point, I see a RA doc for my fibro, my general doc and now the GI doc. How do we get it all on track? I am also hitting the age of menopause, so how much do hormones affect MC. My estrogen is all over the place during the month and I know that I can get diarrhea from that being too high. eeeek!

Any advice on anything I am mentioning would be so appreciated. I want my life back. I haven't worked since this happened as the diarrhea attacks are sudden and violent.

How long before the entocort takes effect?

Also, does anyone use bile salts? A nurse practitioner at my general docs office suggested that everyone should take these.

What about Artichoke extract?

What about Phosphatidyl Choline in Lecithin?

I swear, at 46, I feel like I'm 80, I am literally taking 13 different types of pills... some are natural and some prescriptions. I am sick of popping pills.

I want to be active again!

Thanks for listening!

[tex]

Hi Kathleen,

Welcome to our internet family. I hope you don't mind, but I moved your post to begin a new thread, because many members may overlook it, tacked onto the end of someone else's already-long thread.

There is a very good chance that pathogens in the restaurant meal triggered your MC. It's also possible that using NSAIDs could have caused it, but that is a moot point now, of course. Whether or not NSAIDs were the trigger, you will need to carefully avoid them in the future, because they can trigger MC, for many of us.

I don't see any warnings anywhere in the literature, against stopping the use of Symax abruptly, so it should be safe to stop using it anytime you choose to do so. You are correct about MC and IBS. IBS is usually misdiagnosed MC - if the GI doc does not take biopsies during a colonoscopy, and the pathologist does not carefully look for the markers of MC in the biopsy slides under a microscope, then MC will be overlooked. IOW, you can't find MC, unless you know how to look for it, and you have to actually look for it, in order to find it.

Yes, you are quite correct, MC affects all of us differently. That makes it very tricky to treat the disease, and we all have to kind of fine-tune our treatment, until we find a combination that works the best for us, individually. For some, achieving remission is a simple, straightforward process, and for many of us, is is one of the greatest challenges that we will ever face. As you will discover by reading here, though, you can get your life back.

Entocort does not work for everyone, (it's about 60 to 70 % effective), and a few of us are intolerant of it, and therefore have adverse reactions to it, but it is arguably the best med out there, for treating MC, at the moment. We have found that it can take anywhere from a few days to a couple of months, and longer, in a few cases. Typically, it takes 2 to 4 weeks, but don't be discouraged if it takes longer. Many of us have to eliminate certain foods from our diets, also, before we can achieve reaction. It depends on how sensitive we are to those food intolerances. Sometimes Entocort will mask those intolerances, and allow remission, without diet changes. As you mentioned, we are all different.

Many members have tried bile salts, but I'm not aware of any who have found any significant degree of relief by using them. I'm not familiar with artichoke extract. Most commercial lecithin is derived from soy beans, (including Phosphatidyl Choline), and about half of us are intolerant of soy and all it's derivatives.

A lot of medications, (both prescription and OTC, or natural), can trigger MC, and many of us have achieved remission by either cutting out all of those meds, or carefully analyzing the labels, and cutting out any that contain any intolerances in the ingredient list.

I swear, at 46, I feel like I'm 80

Many of us have that experience, until we are able to find the key that enables us to control the disease. When we get out of bed in the morning, if we're having a flare, many of us feel as though we were hit by a train, and we can't even think straight, due to all the brain fog.

If you are willing to do what needs to be done, you can get your life back, and we will help in any way we can. Please feel free to ask any questions that come to mind.

Again, welcome aboard, and I wish you the best of luck on your journey back to good health.

Tex (Wayne)

[Jan]

Kathleen,

Sorry to hear that you had to find us and know there are a bunch here to help support you. I can only tell you my experience. I was diagnosed 4 years ago and have pretty much been in remission until recently. I was prescribed entocort and got relief within about a week. I also kept a food/elimination diary (and still do). That helped me pinpoint things that really set me off and to be able to talk to my GI about how frequently I was going and the consistency.

This is an unfortunate adventure that all of us here have and are going through. And it is pretty much an individual adventure with some similarities. Some have great luck with diet alone and others with diet and medications. You might want to look at Dr. Fine's work on Entrolabs.com. I had the gluten test done 3 years ago and am seriously considering the egg and legume tests as I am having problems with one or the other. If you don't have the tests then the only other way is an elimination diet. Most who have gone that route start with gluten and dairy.

Ask any question you want. There really isn't anything off limits. You asked quite a few. I do have to admit I don't know anything about the other drugs and supplements you are taking. There are others who have more experience with those who I am sure will be checking in later.

Good luck.

Jan

[smile4menow222]

for the warm welcome! So, what does a typical day for food look like? I am starving, but everything I eat runs through me. Sometimes, it's immediate and sometimes, it's a couple of hours later...

[Rose]

Kathleen,

Welcome. You have found a wonderful place and everyone is very warm, caring and understanding. Also, listen to Tex, he is a complete wealth of information.

Like you I am 47 (48 in June) and very active. I get up every morning and run 5 - 6 miles, bike 10 miles and walk in the afternoon. I have been running for over 20 years. I was running outside, but too many potty breaks so dh bought me a treadmill about 4 years ago and I have a stationary bike for riding. I have been running, biking and lifting weights (I even was an aerobics instructor, but stopped when I got pregnant with my sone 11 years ago). So don't let this keep you from being active, its tough, but you can do it.

I have had constant d all my life, but last year it started really getting bad. I was finally diagnosed with cc (mc) in June of 08. I go about 15-20+ times a day. I have tried all the drugs and nothing worked except for the Entocort, but I could not handle the side effects and could not function. And yes, it can make you nauseated, I was 24/7. I have cut out all gluten, soy and dairy.

I also go to a Rheumatologist for psoriatic arthritis and Raynaud's Phen.

Rose

[Jan]

Dear Kathleen,

You asked about what food someone eats on a typical day. Since I am in a slight flare up I have chosen to eat rice, chicken broth, herbal tea and an occasional fruit. I would suggest that you think bland and stuff without much fiber. For some folks things that are acidic (like tomatoes and citrus fruit) seem to create more D. I can't eat raw or semi cooked veggies. I have to eat mine cooked to almost mush. Hope this gives you some ideas.

Jan

[starfire]

to the board Kathleen!! But I'm really sorry you needed to look for us. I know you must feel like you've been hit with a 2X4. I know I did when I first found out about MC especially on top of the fibro. Also, to find out you can't take NSAIDs for the fibro. Perhaps if you can get the MC under control the fibro will follow suit. I know most of us have body aches/joint aches with MC.

My only advice is to keep reading and researching. There are a lot of good study references on this site as I'm sure you know.

Shirley

[smile4menow222]

Not much fun eating... Like KD, I'm italian... my love for food is intense! I grew up cooking as we had a restaurant since the day I was born. My grandma started it in the 60's.

I have probably had this all my life. I wonder if my mom had it, too, as she always had an upset tummy. I hope the endocort works. Today, well.... I had my morning coffee and then, well, you know. Then, I haven't had another bout of having to run to the potty. So.... maybe, the endocort is working. My mouth tastes horrible and metallicy... and I am so dry. But, at least I was able to leave the house today.

I work for Starbucks, I get a pound of coffee FREE every week! My friends and neighbors are going to love me more now when I give them free coffee ALL the time, now. Darn...

It's so hard as I feel tired all the time now. I need to get back to some sort of exercise. I haven't really worked out in about 2 months. But, since I can't eat, I feel so tired.

It's a battle isn't it? Has anyone found a meal replacement bar or drink that seems to be tolerable?

Oh well... it was time to clean up my eating anyway... There's always a bright side, right? I also needed to lose about 20 lbs, too.

Thanks so much everyone!!!!! I am going to be quite busy reading all of the posts. There is so much information here. Everyone has so much insight and information to share. And, of course, I have so many questions. Yes, I really am italian and originally from the east coast (well, New England) - so, I talk fast and because of working at Starbucks, I can multi-task with my mouth... tee, hee.

Thanks again... Any and all advice welcome...

What did you think about my hormone question to this MC stuff? I guess that's a question to add to my list for my GI doc. They are great!

[KD]

Kathleen,
Welcome to the newbies club, I was just diagnosed on Feb 23, sucks doesn't it. Funny thing you say about sudden onset after what seemed to be food poisioning, mine started the same way. I have not had to use the endocourt yet (I am on Asacol)and have had some great success with the "guts and Glory diet" outlined in the book "Restoring Your Digestive Health" by Jordan Rubin and Dr. Joseph Brasco. Many of others on this fourm are not fond of Jordan Rubin, but his method has really worked for me. You can find the book at Amazon for just a few $. It is a tough diet, and phase one (resting your gut) all you eat is a soup you make out of chicken and various vegetables for 7-14 days. I lost 15lbs and have not recovered from the fatigue yet, but I have advanced to phase three (starting to add in some regular foods) and had two d stools in the last 24 hours, but other wise have been d free for 1 week. I think the probiotics and goats yogurt (I am not dairy intolerant) have really turned it around for me, but when I tried the probiotics before I did the gut rest portion of the diet, they made me worse.

I have also been starting to exercise again, rode 21 miles last sat, 27 on wed and 25 yesterday, what used to be fun has become quite a challenge. Between the d and weight loss from the diet I have really lost A LOT of strength and endurance!!! I got off the bike in tears yesterday feeling down that it has become so much more difficult. I plan to start lifting weights tomorrow, but won't be biking, it is suppose to snow!!!! I am in Reno, 72 yesterday and snow tomorrow sounds like spring in northern NV.

I have read so much about the connection of MC to gluten intolerance, I have committed to being gluten free for now, and won't even test that until after the ride we have planned in Santa Rosa on May 2, my first attempt at a Century. I feel I am in pretty good control at least for now, and I just want to get my strength and endurance back. There are lots of good nutritional supplements for exercise that are gluten and dairy free, Hammer Nutrition has all of its products GF and DF. I did a search on the net and found quite a few, but since I have used Hammer in the past I think I will stick with that. I think the biggest problem I have has with all of the d and diet changes is keeping my electrolytes balanced so I can continue to exercise. My son is a cyclist for his college team, and he is helping me find the products that can help with endurance and electrolyte balance.

Sorry to hear about your diagnosis, I am just learning that this condition can be a real challenge. My mom was diagnosed with MC about 20 years ago, and she took meds for a while and had no long lasting symptoms until last month. She has been under a great deal of stress and it may have set off another flair for her, she does not see her GI until April. I am not ready to have my stools tested at entrolabs yet, I will have to see how this all progress for me. Good Luck to You, It is nice to see another active person with the same challenge.
KD

[starfire]

Now that both of you have mentioned food poisoning............ I remember the 2nd "episode" I had I ended up at emergency and it was blamed on food poisoning that time. It wasn't. I know it was MC. It was just like all the other "episodes" only more severe. They even kept me overnight because I was so dehydrated.

Love, Shirley

[tex]

Hmmmmmmm, now that you mention that, Shirley, thinking back to when my episodes began - for about a year, I thought that I was either having repeated cases of the flu, or I was the unluckiest guy in the world, for picking up food poisoning. When it first began, I would get sick about every month or slightly over. Then I started getting sick a little more often. After about a year, I was getting sick about every two weeks, and one day the D started, and wouldn't stop. After a couple weeks of that, it finally dawned on me that something besides the flu or food poisoning was going on.

Tex

[Rose]

Kathleen,

Paisan, I'm Italian and from New England too. It sucks not being able to eat pasta. I have tried the rice and corn type, but it is very gummy to me and just not the same. I was born in Massachusetts down by the Cape.

I don't have any problem with coffee, so if you are ever near Knoxville, TN, please drop a load of Starbucks columbian this way. LOL

When I was on the Entocort, I went to bed at 7:00 each night b/c I was so exhausted, dizzy and nauseated. So I hope you get your energy back soon.

BTW, I loooove your hair. I have a hair cut just like that, or I should say used to, only right now it is kind of flat on top. I like it like yours, but have not found anyone here that can "poof" the top up. My hair is really thick as well (an Italian thing I think).

Love,

Rose

[smile4menow222]

being able to talk about poo!

KD, thanks for the support! Don't you just love living in the west? It has been in the 70's here, too. 78 today and then... snow storm for the next week. I love the snow. We have not had enough here. Headed up to the mtns. on Wed to snowshoe. I hope I can do it. Might need to bring depends. Tee, hee. So, I drink a ton of water, how do I know if my electrolytes are off. I feel like I am still dehydrated, but I drink soooo much water. I am also hoping to get back to the gym to lift. With the fibromyalgia, lifting makes me feel twice as sore. I have to get back at it though, I feel so out of shape and mushy!

Shirley and Tex, thank you for your support, too! I agree, I don't think I had food poisoning, but I know I ate something that was "off". I was so sick that one night. And, that probably irritated my colon sooooo bad that I couldn't get out of the cycle. I have been under horrible stress since 2004 (mom died, husband left, shoulder surgery, dad with heart troubles, sister heart valve replaced, moved, raising 2 girls on my own, new job... eeeek!) My poor tummy has been under stress for too long.

Endocort is seeming to work. I do have a headache and really sore neck. I took an anti-inflammatory just now. I don't know if I can go off of those as my fibro really improved with that.

And, I am dying for a cup of coffee... yesterday, it did make me go, but then I was good all day, except for a little poo in the afternoon. See? Poo, talk! tee, hee...

Rose, how long have you been in TN? Wow! That's a change from the Cape area! It must be beautiful in TN right now with things "springing" up. If your hair is thick, wirey and even a bit curly, you can do my hair. I don't blow dry, comb or anything, I towel dry a bit and use hair gel on the sides to slick it down and then I just tousle the top with a little hair spritz. It's so easy so I haven't changed my hair style since the 80's. Thanks for your support. How are you feeling? If you don't use Endocort, how are you managing your poo? My honey starting calling me poo bear... eeek! LOL!

Thanks everyone!

hugs, kathleen

[Rose]

Kathleen,

I don't manage my poo. My poo manages me, no really, I just go with the "flo" so to speak. As I stated in my first post, I average about 15-20 times a day (we call them "conference calls" at our house and the bathroom is my "office"). My GI wasn't worried about me at first b/c I have been maintaining my weight, but when I say him in February, I had lost 10 lbs. so we tried the Entocort. It worked, but once I went off it due to the s/e and then the d came back in full force about 2 weeks later. I actually have to wear a diaper to bed (I know, very sexy) b/c I have woken up quite a few times in a pile of poo w/o even knowing that it happened.

But I don't let it stop my from exercising. I lifted weights, ran 5 miles and biked 10 miles on my Lifecycle this morning. I have to get it all in first thing in the morning or I won't do it. I am a fanatic about it b/c it really relieves the stress.

We moved from Mass to Florida when I was 5, so actually I grew up and lived in Florida most of my life. About 8 years ago, my dh took a job here in Knoxville. I love it here, we love the change of seasons, mountain biking, hiking and the cooler temperatures. I can't stand the heat, but do miss the beach and boating. I also like that we get a little snow every now and then, not enough to get snowed in, but sometimes enough to build a snowman.

My hair is very wavy and gets kinky curly when it grows out so I love it short. I have had this style since the 80's as well, I just need to find someone who knows how to cut. I love it short and am such a tomboy that I barely know how to use a blow-dryer. I love that I can let it go or dry it.

Lots of Love,

Rose

[Courtney]

Welcome, Kathleen!

I see I'm already getting in late on this thread, but I wanted to say hello!

Courtney