S.O.S.!

[jillian357]

Hi all!
I haven't posted lately, but I do check in from time to time to read the latest and greatest. I sincerely hope everyone is doing well!

I'm ashamed to admit this, but I'm feeling cruddy and need some support. I was doing great before my half marathon in Oct of this year.
My gastro made me promise that after my race I would wean down to 2 Entecort a day, which I have done faithfully.

I've not been doing so well ever since. I have not had the Entrolab testing, but I have attempted to eliminate all gluten, dairy, & soy from my diet. Prior to weaning down the Entecort I was feeling pretty good.

I was very good at Thanksgiving and monitored every speck of food that went into my mouth....but I'm just doing awful since then. I've been taking Bentyl like candy because the stomach pains are so intense.
The past three attempts at running just a few miles have been cut short because I have had to race home to the bathroom, barely making it.

My diet has been very bland.....for breakfast either GF cereal (dry), GF toast, or a rice cake with jelly. Lunch consists of 3 oz. of chicken breast, maybe 1/2 cup of wild rice, a mid-day snack of a boiled egg or a piece of fruit. Dinner is usually more chicken breast with either a white or sweet potato. All of these foods have been just fine until lately. I'm diligent about reading labels and don't eat anything unless I am certain it's GF/DF.

Is it possible that the reduction of the Entecort has triggered a flare? I'm just dumbfounded at this huge setback. I feel like there is SO little I can eat, and now even the few things I have listed up above are causing me problems.

I truly wish I never had to eat again, it would be so much easier! My employer is having our Christmas party this Friday, and I know I'm just going to be sitting there watching everyone else eat. I'm afraid to eat hardly anything right now.

I go back to the gastro in a week and a half, and plan on discussing this with him as well. Of course, in true gastro fashion, he doesn't believe diet plays a role in controlling MC, so I don't expect a lot of help from him on this issue.

Any thoughts? Is there something I may be overlooking that could be causing this setback?

Thanks a bunch,
Jill

[JLH]

Sorry, I wish I could help you.

Maybe, I can help with expanding your diet. I bought the GF, CF, SF book and have branched out a bit with my diet. I was eating Ian's chicken patties noon and night!

http://www.ceceliasmarketplace.com/glut ... guide.html

I found and reported a goof on the Newman's Own dressing but they have yet to issue an alert! It may contain soybean oil.

[JLH]

The PP have proven your doc wrong about the diet.

[tex]

Aw Jill,

What a bummer, especially since you were doing so well, before. Please don't be ashamed to ask for support - we've all been in that situation. Heck, that's what we're here for.

I don't recall how long you've been on the diet, but obviously it hasn't started working yet, and if it hasn't had enough time to begin working, then yes, reducing the Entocort could certainly cause the D and other symptoms to return.

Since your GI doc doesn't believe in diet control for MC, anyway, maybe he will agree to allow you to increase the Entocort dose back to 9 mg per day, again, long enough to allow your gut to heal, (so that the diet has time to begin to work). I don't know if there would be any point in even mentioning the diet to him, at this point, though - you'll have to play that by ear, I suppose.

If you want to stop the D by Friday, you might call your GI doc's office now, to see if he will approve increasing the dose now, so that you don't have to suffer until your appointment. I don't see any logical reason why he wouldn't agree to that. I don't mean to advocate medical disobedience here, but I believe that if I were in your shoes, and I didn't get a prompt approval, I would temporarily increase the dose, anyway, so that you don't have to suffer through Friday's party, at least. It will probably take a couple of days for the increased dose to take effect, so time is of the essence. Unless you're showing signs of being allergic to it, (neurological or anaphylactic symptoms), you can safely take up to 18 mg per day, on a short-term basis. (Please don't tell him that I told you to do that, though, because I'm just telling you what can be done, or what I would do - I can't make any medical recommendations, obviously).

Your diet looks good, unless you happen to be one of the few who are sensitive to the protein in egg whites - not very many of us are sensitive to eggs.

Good luck Jill, and I hope you can get some short-term relief, until the diet starts to have an effect, and begins to control your symptoms.

Love,
Tex

[jillian357]

Hi Tex and Joan!

You guys are awesome....thanks for replying. I really debated posting, it almost makes me feel like a "loser" that I'm having a flare when I was previously doing so well. You both certainly made me feel much better.

I know I shouldn't beat myself up over it.....but darnit, I've tried to be so proactive getting this under control and have eliminated SO many foods.
I'm sure ALL of you can relate.

Oh well, hopefully things will settle down again, the sooner the better.
I've been watching the diet since May of this year.

Tex, thanks for the recommendation to up my dosage to 9mg until my appt in a week and a half.

I had considered upping it as well, and you only confirmed that it's a wise idea. Last time I saw the gastro he told me to wean down, but "don't be surprised if my symptoms return."
Uh, well they did! I guess I was trying too hard to be a good patient.

I have more running events on my radar for next year, so I just HAVE to get better!

Is there any harm in continuing on 9mg of Entocort for an extended period of time? The only side effect I seem to have is easy bruising...but nothing over the top. I was really hoping that this far along I would have been able to get totally off it....but now I realize that's not going to happen anytime soon. <Sigh>

Part of me wonders if there isn't an alternative medicine, but I really don't relish switching to something with a ton of side effects.

It's really good to connect with you guys again. Thanks for being there!

Love,
Jill

[tex]

Jill,

So far, Entocort seems to be the most effective, safe, medication to use for MC, except for those who are allergic to it, of course. I wouldn't want to take Entocort at the full rate for 8 or 10 years or so, but I believe that several members here have taken it for six months to maybe a year, at the normal full rate, with no observed negative consequences. I haven't seen any reports of adverse consequences for long-term use of Encotort, (IOW, the long-term side effects don't seem to be significantly worse than for short-term use), though there are plenty of bad reports about the long-term use of Prednisone.

Let us know how it goes, and since we all have setbacks, on our path back to health, if/when it happens again, please don't hesitate to log on and tell us about it. Good news is always welcome, too, of course. We like to know how our family members are doing.

I hope it brings prompt remission.

Love,
Tex

[G'ma Mary]

Jill;

I just now read your post. I'm so sorry you are feeling "sh---y". That's never good - we all suffer enough without setbacks like that.

Please be assured that those things happen, and especially when we are new at the diet (it took me over a year to stop having minor set-backs!) Also, remember that stress affects how we react. Sometimes stress raises it's lousy head after the fact rather than when we are actually experiencing the stress. In other words, you've just come through a physically stressful event - the marathon! It could be that your body is still reacting to that. If that's what it is, you need to treat yourself well and give your body time. Be patient! (I know that's lots easier said than done!)

Sending good vibes your way

G'ma Mary

[jillian357]

Good morning all!

Thanks again for all the support and help. I'm trying to keep my chin up that this recent flare up will pass soon. I went ahead and took my full dose of Entocort this morning.

Thanks for the good vibes G'Ma Mary!

Does anyone here (specifically the gals) notice that their symptoms get worse with hormonal changes during menstruation?
Every month I notice my symptoms get a little worse around that time.

ODD.

Thanks again, to everyone. You all are tops in my book.
Love,
Jill

[RUBYREDDOG]

Hi Jill,

Sorry to hear of your setback. Most of us seem to have them as well. As for me, I have found that Emodium works well to stabilize my digestive system on a "short time basis". I have taken it before, (friday) and during a weekend away from home where I have to eat at restaurants often.

I am not on any other medications so I don't have any issues with interactions. Entocort may present a problem for you however, so please seek medical advice before you try this. As Tex always advises YMMV. Good luck!

Hotrod

[JLH]

Jill, have you taken any new meds or supplements that might have hidden soy or lactose? There is a list here by Jean, I think, that has some other names of soy. I cannot take my fish oil because it has d-Alpha Tocopherol (soy).

[Matthew]

Joan

A true fish oil like Carlson-

http://www.carlsonlabs.com/product_deta ... odid=00205

Has no soy. It is only oil from fish.

Some cheaper brands extend with soy and it is best to avoid them.

Don’t feel that you need to avoid the many, many benefits of a high omega 3 oil just because the first you found was extended with soy.

Increasing my omega three intake has made many dramatic changes in my health .

To your continued recovery.

Love

Matthew

[kate_ce1995]

Maybe Joanna can find time to chime in here and correct me if I'm wrong, but if I remember, she was on the full dose of Entocort WHILE being on an elimination diet. After 6 months she weaned off the entocort and found her gut had had enough time to heal that she didn't need the entocort. Sounds to me (totally unmedically trained) that you need the entocort because your gut is still experiencing inflamation and since we have all proven it takes time to heal by diet alone, perhaps you should discuss with your doc staying with the entocort for another 6 months or so while going on the diet. Then try the elimination again.

Good luck, this is no time to feel crappy.

Katy

[Polly]

Jill,

Katy took the words right outta my mouth! How did you do in the half-marathon? Also, I agree with the comment that it's important to look at any herbs/supplements for intolerances. I think PATIENCE is the key word here. May is not so long ago - remember, it took me 9 mos. to see a formed BM.

Love,

Polly

[JLH]

Thanks, Matthew, I look for it w/o soy........(I don't like fish.)

I have the remainder of a bottle of 300 Fish Oil capsules that I gave to DH.

[starfire]

I have to agree with Matthew about Carlson's. I think they produce a great product. It's taste is tolerable (for me at least).

They have a little box on the right of some (or all ??) pages where you can do a search for products without some (or all) of the following ingredients.

Wheat
Soy
Salt
Yeast
Milk
Preservatives
Corn
Sugar
Gluten

I tried it with all ingredients and the search returned 160 products. I was a bit surprised.
I wish you the best............

Love, Shirley