Newly Diagnosed and new to this board

[katbox]

Hi all, I am 1 week on Entocort, and trying to figure out my diet options. going to start a food log, as I have no idea what I should be removing from my diet, if anything!

so far, I have avoided caffeine and alcohol.

I have an GI appt on feb. 6th.

was up ice fishing for new years when this hit me the absolute worst! if any of you know what it's like to

be on ice with no typical bathroom when you're having ahem issues! well, let's just say I won't be doing

that again!

anyway, I just want to see what's up with this board and talk with folks who've been dealing with this "problem"

I missed an entire week of work being tested and then finally the colonoscopy told the story.

he also mentioned that my colon was "twisted"...this made the test painful. I had major surgery in Aug. 08 and he mentioned that this may have been when my colon got twisted.

I am going to investigate this further when I have my appt in feb.

don't know if anyone is on right now, but I will check often. I've read some of your conversations, and I think this will be helpful for me, so I appreciate it!

[JLH]

I'm glad you found us.

Gluten, is the first thing to eliminate as you probably have read right here. Your doctor will probably "poo poo" it, however, it works. If you start right away, you may have improvement by the time of your doctor's appointment. I hope so.

Read as much as you can here and at www.enterolab.com Ask all the questions you want here. You have found the best help there is with more info and support than you can imagine.

[JLH]

In addition to the great info on this site here is a primer http://www.webmd.com/diet/slideshow-gluten-free-diet

[katbox]

hey jlh...thanks for the info. I will check the sites you mentioned. I have heard wheat is bad for you when you have this problem.

I have noticed when I eat anything lately with cheese, the next day in am I am tied to the toilet every 1/2 hour or so!

it's totally consuming (no pun intended!) my life right now. I'm angry and depressed over this. afraid to go anywhere, you know the drill I'm sure.

anyway, thanks for the quick reply and I'll keep on the site for updates and encouragement....seems a good place to get support.

later-kat

[tex]

Hi Kat,

Welcome aboard. Unless you want to control your MC symptoms by diet alone, it may not be necessary to remove anything from your diet. Those who choose to control their symptoms by Entocort, usually stay on the full dose of Entocort for about 6 months, more or less, to give the inflammation in their colon time to subside, and to allow time for the damage to heal, and then they slowly taper the dosage rate, until they find a maintenance dose that will continue to control their symptoms, usually 3 mg per day, or 3 mg every other day. A few with severe cases find it necessary to follow a strict diet, in addition to Entocort, in order to achieve remission, and maintain it. In those cases, it usually takes much longer to achieve control, but eventually, (maybe after a year or two), the Entocort can be reduced and finally completely stopped, as long as the diet is strictly followed. This disease treats everyone somewhat differently, so each of us has to develop a treatment plan that works for us, individually, based on our lifestyle, and our preferences.

Unless used in excess, caffeine and alcohol have virtually no effect on MC, though most GI docs will claim otherwise. Beer must be avoided, however, if you choose to control your symptoms by diet, since beer contains gluten, (from the malt). Most of the higher alcoholic content beverages, however, such as whiskey, scotch, rum, vodka, champagne, wine, etc., are gluten free, and will not affect your MC symptoms, (again, as long as they are consumed in moderation). There are also GF beers available. Anheuser-Busch makes one, for example, called Redbridge, I believe.

That twisted colon is definitely not a good thing, and if it's due to the results of surgery, someone made a big boo-boo before they sewed you up. The problem is, it tends to behave as a blockage, and while it may not be a problem as long as you have D, once you start having normal BMs again, you may be in trouble at some point, and correcting that problem often/usually requires surgery. If that turns out to be the case, someone "owes" you a surgical correction, IMO. I had an uncle who had to go through that, but his colon twisted on it's own, for some reason or other.

Feel free to ask anything, and again, welcome to the board.

Tex

P S Based on your last post, apparently you are casein-sensitive, so that implies that you are almost certainly gluten-sensitive, also. (Casein is the primary protein in milk, and therefore it is in all dairy products).

[katbox]

thanks for the nice welcome. the dr. automatically put me on the entocort. I did not request it, knew nothing about it and not sure I even want to continue on this route. I'm a little concerned with side effects I've read about on WebMD and mayo clinic, etc. the heart, blood pressure thingy and the bone loss. I'm also on some meds for acid reflux that I've been on for years. ugh!

I am going to take some advice I've gotten here and else where to maybe watch my gluten. No Beer! also, I'm a big bread fan...

oh well, the ulternative is worse! what about wine? I like an occasional white zin. I haven't had this long enuf to know how things really affect me, so I may try it and see what happens!

that twisting of my colon...the dr. that ordered the colonoscopy and gave me my diagnosis said you were probably born that way!

I don't think so, cuz I had a colonoscopy many years ago (or that other test xray) and it certainly didn't hurt like this time.

anyway, sorry about going on and on, but it's really nice to have people that understand what I'm going thru and not judging me, you know?

I think coffee is a trigger for me, but I'm ok with giving that up, at least until I can get this under some control. Like I was saying to JLH, I'm getting to be like a hermit and depressed. which reminds me, what kinds of supplements, food, or meds would you guys recommend for depression?

thanks for the support my friend!

later-kat

[JLH]

The big three sensitivities of our PP family members are gluten, casein (the protein in dairy) and soy. I truly hope you don't have the latter.

[katbox]

Hi Joan,

why soy? is it in everything or something. I'm such a rookie when it comes to ingredients and such. I'm a learnin thanks to you guys!

thanks-kat

[JLH]

Oh, yes, I was depressed, stressed and angry until I found this site.

I have needed antidepressants but I won't take them for various reasons including MC.

[JLH]

Yes, soy IS in a lot of foods as I found out. There is a post by Jean that tells all the names for soy.

After I tested for soy, I had to give up my gluten free (GF) waffles and French toast because they had soy.......

[JLH]

I found substitute products without the soy.

[JoAnn]

Hi Kat, welcome to this wonderful site. I've only been a member for a month and I can't tell you how much help these wonderful people have been. I just got my results from enterolab and found out I'm gluten, milk, soy, egg, and yeast sensitive. If it hadn't been for these great people, I would still be eating gluten and making myself sicker and sicker. My gi started me on asacol which seemed to help at times, but not in the long run. He then put me on a pepto bismol treatment that I think helped a little. Right now I'm eating gluten free and dairy free (and as of today egg and yeast free, and no soy). I take probiotics in the am and 2 imodium at night and I've been managing quite well (knock on wood!) If you will listen to Tex and all these veterans who have been fighting this battle, you will be on your way to health and healing. The depression seems to be a big part of this. My depression started lifting when I found these wonderful people and started eating correctly. They will lift your spirits and help you get through the tough times. You will realize that there is a light at the end of this tunnel. Good luck in your journey. JoAnn

[JLH]

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=736

Hopefully, you won't need to use it.

[katbox]

thanks JoAnn, and yes I will be coming here often! I am overwhelmed with finally hearing some really good advice and I don't feel so alone in this hell! sorry, but I guess I'm a little angry right now, and feeling like no one in my family can relate!

thanks for the nice welcome and I'm sure we'll talk more soon. right now, I'm going to CVS to get some more books on diet without soy and gluten. I really feel like by changing my diet will help.

it's really a bummer about dairy tho...big cheese eater and butter. any good substitutes for butter?

what about honey? pasta? pizza? meat?

ugh!

thanks all,

kat

[tex]

Kat,

Only about 10 % of Entocort is absorbed into the bloodstream, so as the corticosteroids go, it has the least amount of effect on the adrenals, and other body organs. That makes it much safer to use than Prednisone, for example. It primarily targets the ilium, (the lower third of the small intestine), and the colon. Still, it's always safer to control your symptoms by diet, of course, since there are absolutely no adverse side effects to the GF diet. Believe it or not, celiacs live longer than the general population, and celiacs, of course, have to follow the GF diet, to control their symptoms, so obviously, it's a healthy diet.

Be aware that if you are taking a proton pump inhibitor for the acid reflux, some of them have been determined to be triggers for MC, and it is likely that any of them may be capable of causing MC. Lansoprazole, (Prevacid), for example, is the first one that was linked with MC, and there is a lot of information on this, available on the web. In fact, another member with the same nickname as you, (Kat, short for Katinchat), after considering the information that she learned here, figured out that her MC was due to a PPI that she was taking, and after she discontinued that drug, her MC symptoms disappeared. She has only been a member for a few months, but at last report, (a week or two ago), she was doing fine. I believe she was taking Nexium. Doctors should have their butts kicked for prescribing that stuff right and left, without advising patients of all the risks, and then not figuring out the connection, when something such as MC turns up. We shouldn't have to do the most important part of their job - correcting their mistakes. After all, they're the only ones getting paid for their so-called "expertise".

Wine should be OK, unless you are yeast-sensitive.

MC is a very depressing disease, until you can get your symptoms under control. Many patients find it necessary to get a prescription for an anti-depressant. As we say around here, "If MC doesn't depress you, probably nothing will".

To address some of your other questions:

Most of us, (not all of us, though), can use ghee, which is refined butter.

Pasta, pizza crust, etc., will have to be replaced by gluten-free substitutes.

Honey should be OK. Most of us don't react to meat, except that a lot of chicken and some pork is injected with "tenderizing" solutions that sometimes contain gluten. You have to read the labels. Always! Sanderson Farms, and one or two others, sell un-injected chicken.

Sadly, there are no casein-free cheeses. The closest substitutes are cheeses made from "creamed" cashew nuts. I believe there are a few recipes for those in Dee's Kitchen, here:

http://www.perskyfarms.com/phpBB2/viewforum.php?f=7

Dee is a professional chef, and she has compiled hundreds of her delicious, gluten-free, casein free, soy-free recipes, there.

Tex