I want OFF this roller coaster ride!

[jillian357]

Morning Everyone,

Sheesh, I feel like the only time I post is to whine about a flare. I hope you can forgive me....I'm just frustrated beyond belief again and need some help!

Quick recap--I was having a bad flare in mid Dec and went to see the gastro in January....he gave me a short term course (7 days) of Prednisone to calm things down. It seemed to do the trick at the time.....and I thought the flare was over.
Darn it, the stomach is acting up again big time! I'm eating very carefully still, and have even changed some suppliments to totally get rid of the soy in my diet. (I discovered my fish oil contained soy-duh!). I've been so dilligent about reading labels, etc...you know the drill.
I've been eating chicken and sweet potatoes, a bit of turkey (all safe, no injections of broth or whatnot)....not much else, other than some gluten free, soy free cereal, bananas, and white potatoes.

All day yesterday I felt some rumblings and against my better judgement decided to go for a quick 5 mile run. I was fine until mile 3, and was stopped dead in my tracks by the most horrendous stomach cramps.....of course anxiety set in because diarrhea almost always follows. Sure enough, with one mile to go before getting home it hits, and I'm clenching things together as best as I can to get home.
Thankfully I was able to make it home without an accident, but of course spent the better part of the evening in the bathroom.

I go back to the gastro on Monday to follow up with him from the Prednisone course. Should I see about changing meds? I'm currently taking 9Mg of Entecort daily....obviously, it's not working as well as it was before.

Argh! I want to scream Uncle....I've had enough!!!!

Thanks for listening.....
Jill

[Rose]

Hey Jill,

I am a runner too and I used to run outside until I started feeling the call of the wild 2 or 3 times a run, now I run indoors on a treadmill that dh bought me. You are so lucky to make it home, so many times I have not made it home on my runs or from taking my kids to the bus stop (in a car no less) or coming home from somewhere and being almost there in the car. I just don't have the ability to hold it when my plumbing starts that flushing sound.

Anyway, I just got off Entocort due to the side effects and have never taken Pred. I am just going to wing it by diet only. If the Entocort is not working for you then I would switch to something else.

Love,

Rose

[tex]

Hi Jill,

I'm so sorry to hear that remission continues to evade you. I have to agree with you, if the Entocort isn't controlling the D by now, it probably isn't going to. If I recall correctly, you've been taking it for 9 or 10 months, now. With many of the meds used for IBDs, D is a possible side effect, but D is not a known side effect of budesonide, so I doubt that discontinuing the Entocort is going to help, but who knows? You might be a rare case where budesonide causes D.

I'm puzzled by the fact that Prednisone helped, but budesoide does not. In all the relevant clinical trials that I've seen, budesonide has always been shown to be just as effective as Prednisone, for treating Crohn's and UC. This makes me wonder what we're overlooking. I doubt that some other internal pathogen, (other than MC), is present, because Prednisone shouldn't control a bacterial or parasitic infection any better than budesonide would. It is a stronger systemic corticosteroid, however. Maybe there's a clue hidden there, somewhere. Do you by any chance have any type of rash, or other skin problems? Are you taking any protein supplements of any kind?

If you're looking to try another med in place of Entocort, the next step up the ladder would probably be one of the anti-TNF drugs, such as Humira, Remicade, or Embrel. Methotrexate is another option, but it usually takes about 2 months or more to reach optimum efficacy. One of our members tried Imuran for a year, (without success), and I believe that she said it takes about 6 months for it to reach efficacy. All of these meds are "big guns", and are not to be taken lightly. IOW, they are powerful immune system suppressants and they can have dramatic results, but of course, for a few patients, they can also have very serious adverse effects. The anti-TNF meds are very expensive, and have to be administered by injection, (once or twice a week with Enbrel, and every other week with Humira). Remicade is given as an IV infusion every 4-8 weeks.

Before you try one of these other meds, though, be sure to carefully analyze everything that you are putting into, and maybe on, your body. Supplements and meds are especially suspicious, because meds and supplements are not required to abide by the labeling laws that all food products have to honor. Outside of the active ingredients, labeling is strictly voluntary for meds, vitamins, neutraceuticals, etc.

Maybe someone else can think of something else that might be a factor.

Love,
Tex

[jillian357]

Hiya Tex,

I'm really scratching my head over this one for sure. Today has proven to be a bit better as far as the diarrhea is concerned, but the stomach cramps are mighty uncomfortable.
Seems like I make decent progress only to be setback time and time again!

Tonight I'm going to go thru my medicine cabinet and double check all the labels for the vitamins and supplements I am taking to ensure I'm not missing something.
I did cook some sweet potatoes in a teaspoon of coconut oil on Sunday (ate some Mon & Tues), but surely that can't be the offender?

How would I know if my prescription meds are clear of gluten, dairy and soy? I'm presently taking a birth control pill (Zovia), Advair 250/50, Synthroid, Busbar...and of course the Entocort. I would hate to think any of them were the culprit, especially since I did seem to improve quite a bit last year once starting the Entocort and going GF/Dairy/Soy free.

I'm baffled why these setbacks keep occuring.

Thanks, as always, for your help!
Love,
Jill

[Jan]

Jill,

Gloria and I had a discussion about sweet potatoes. She was having problems with them. They are one veggie that has the highest contents of fiber. I can eat most anything but the more fiber the more I cramp up and the big D hits. It usually goes away the next day or two. I also have been able to control it with Immodium. This is just a thought since you had it two days in a row.

Jan

[Dee]

Hi Jill!
Your pharmacist can tell you exactly what is in the prescribed meds that you are taking.
I called all of the drug manufacturers when I first started out.
Good idea to check your other supplements, etc., that you also take.
Sometimes you really have to turn into a detective to figure things out.

Dee~~~

[tex]

Jill,

The main inactive ingredient in Zovia is lactose.

The Advair 250/50 also contains lactose.

Synthroid also contains lactose. I take Armour, (an old, no-longer-in-vogue, natural, thyroid hormone treament, available from Forest Pharmaceuticals). Armour does not contain lactose.

I'm afraid I don't know what Busbar is, so I couldn't look it up.

Entocort does not contain any known common intolerances.

Individually, the amounts of lactose in these pills might not be sufficient to trigger a reaction, but together, if taken every day, they certainly could cause problems for many of us.

Once we cut the major offenders out of our diets, the immune system becomes more sensitive to minor offenders, (such as trace amounts of major intolerances, or intolerances to which we are only slightly sensitive to).

Love,
Tex

P S I forgot to mention - I agree with Jan, that if you are one who happens to be extremely sensitive to fiber at this point in your life, the sweet potatoes could possibly be an issue.

[Dee]

Tex,
Buspar is an anti anxiety med.


Love
Dee~~

[tex]

Dee,

Thanks, it never dawned on me to check the spelling. Duh! In my work, a busbar is a heavy copper strip, that's used to conduct large amounts of electricity in switch panels, etc.

Yep, Buspar also contains lactose.

Love,
Tex

[Courtney]

Jill,

FWIW, I also have problems with sweet potatoes. I have not tried bananas recently, but I understand that they also have a lot of fiber and may be a problem for some. I had to smile at the title you gave this thread, because I feel exactly the same way. Hope things look up for you soon.

Love,

Courtney

[Gloria]

I'm still avoiding sweet potatoes. I've had problems with the tiny amount of soy in a vitamin E capsule. If you're highly intolerant to an ingredient, it doesn't take much to affect you.

Gloria

[jillian357]

Thanks to everyone for the replies.....

Last night I tore my medicine cabinet apart and studied every label....well what do you know, my multi-vitamin AND my Calcium both contain soy. To make matters worse, I also discovered that my chewing gum contained soy, and I've been chewing the heck out of it to stave off the hunger.
Sheesh! I felt like a moron when I discovered these findings (simply because I should have looked MUCH sooner!) but I also feel hopeful once again. I've learned the hard way that I have to study EVERY label on everything I consume, not just food.

I think I really struggle with feeling so helpless when I'm having a flare (thinking I was doing everything right, even though I was ingesting soy unknowingly)....so when I can find a culprit I do feel much better!

This forum and family is an absolute Godsend to me....thank you all. I can't imagine what kind of shape I would be in without your support and advice.

Tex, thanks for looking up the prescription meds for me.....I'm going to see how I do with getting ALL this darn soy out of my system, and if I am still having troubles after that I'll have to address the lactose issue too. Last year during my half marathon training I was doing really well (and taking the same meds) so I hope this recent bout is due to the soy. I guess I'll find out soon enough!

Thanks for the tips on the sweet potatoes too...much as I love them, I'm going to lay off them for a while.

Thanks again everyone!

Love,
Jill

[tex]

Jill,

The most difficult to track down food triggers, are almost always found in the minor items that we ingest every day, and we have learned to trust them, simply because we use them every day.

Casein is a protein, lactose is a sugar. Certain similar proteins trigger MC reactions. I think that you will be OK with the lactose in the supplements you are taking, because lactose does not trigger an MC reaction. Lactose intolerance is simply an issue of poor digestion, due to a deficiency of lactase enzyme. True, in significant quantities, lactose can cause D, but it shouldn't be the type of D that is so common with MC, namely secretory D, and the amount in those capsules and tablets that you are taking, wouldn't amount to a significant quantity. If eliminating all the soy in your diet doesn't resolve your symptoms in a reasonable amount of time, then you might want to consider trying to find substitutions for some of the supplements that contain the most lactose, but I agree with you that the soy is almost certainly a higher priority item, at the moment.

Good luck with this, and please keep us posted.

Love,
Tex

[Gloria]

Casein is a protein, lactose is a sugar. Certain similar proteins trigger MC reactions. I think that you will be OK with the lactose in the supplements you are taking, because lactose does not trigger an MC reaction. Lactose intolerance is simply an issue of poor digestion, due to a deficiency of lactase enzyme. True, in significant quantities, lactose can cause D, but it shouldn't be the type of D that is so common with MC, namely secretory D, and the amount in those capsules and tablets that you are taking, wouldn't amount to a significant quantity.

Hmmm. I don't think this has ever registered with me before. I think I've always equated lactose with milk and thus with casien. Which products besides supplements would likely fall into this category? Maybe yogurt starter?

Gloria

[tex]

Hi Gloria,

I'm not sure if yogurt starter can be trusted or not. I would be afraid that it might contain casein. The reason why the lactose in pharmaceutical products shouldn't be a problem for most people, is because pharmaceutical grade lactose is supposed to be pure. Lactose for other purposes may not be so pure.

Tex