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Date Joined Aug 2008
Total Posts : 47
Posted 9/4/2008 10:00 AM (GMT -6)
curious...If someone is not in remission, does this mean they have tried the prescribed meds and changing their diet, and nothing is stopping the blood and d?
I know this is so individualized, but I wonder if there is ANY common denominator in a medication, a diet...(besides the family relation)
My husband's first flare in '06 was put into remission with prednisone. They wouldn't call him in a refill of the Colasol, that they said he would have to take every day for life, until his follow up from the pred. The appt. was something like ten days after he ran out of meds. When he went and picked up the prescript
ion, it made him start to flare again, and since he was better, he just quit taking it and had been on nothing until June this year. He said he had minor flares in the mean time, but this one was bad again, and the pred. isn't working this time. He is in the process of tapering and wasn't getting any better, even had days in a row of getting worse. It has been up and down this time.
This past Saturday I started him on a herbal supplement called Intestinew. We are very new to all the herbal stuff, but since the man made meds don't seem to be helping, we decided to try the God made stuff (gotta be better by Him anyway
The label says “Supports a Healthy Intestinal Lining with L-Glutamine, N-Acetyl D Glucosamine and Gamma Oryzanol”
also, ginger, marigold, marshmallow, and cranesbill. No yeast, wheat, corn, soy, gluten, salt, sugar, dairy, animal products, binders, fillers or artificial ingredients. Vegetable capsules."
He has seen a significant change. NO more blood. And he has gone from what he calls "explosions" to just LBM. Don't mean to make it sound anything like I'm promoting this stuff, but I just couldn't imagine him never going into remission.
This all gets so confusing and it is so hard to tell what is really helping, because there are so many other factors at the same time. Why did the pred. help last time and not this time? Does this mean that the Intestinew may be what worked this time, but won't work next time?
SCD and the Maker's diet. Are there any of you out there that have tried these and still haven't found remission? Since he is almost to remission now...only LBM, I'm afraid to change anything!
I know on the SCD website it says "at least 75% of those who adhere rigidly to the diet gain significant improvement"
I figure it is worth the try even if he ended up being one of the 25%. If it keeps him in remission, but how do we know that is what is keeping him there?
I feel like there are too many unknowns and it is exasperating! Maybe because this is all new to us, but God bless all the Crohnies!!!! This is rough stuff.
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Date Joined Jul 2005
Total Posts : 733
Posted 9/4/2008 2:08 PM (GMT -6)
I'm so sorry your hubby has to go through this, but bless your heart for being such a "watch dog" for him... us crohnies need as much support as we can get!
Anyone experiencing "active" symptoms of crohn's is considered "NOT" in remission as far as I know. You can have minor symptoms on an infrequent basis and still be considered in remission, but anything more than that and my docs say I'm NOT in remission.
As far as your whirlwind of confusion - I totally understand. I'm in a similar boat myself with the Prednisone and going gluten-free and digestive enzymes and not really being sure WHAT thing is doing WHAT! Based on what I've gone through in the last couple months, I would suggest the following:
If the Intestinew seems to be working, then STICK WITH IT by ALL means.
Prednisone is such a wacky drug that I wouldn't spend TOO much time worrying about
why it worked last time, but not this time. Sometimes it's a matter of being started at a high enough dose... sometimes I think our intestines are just TOO torn up to even absorb the Prednisone properly... I really don't know.
Definitely do your research on the diets. There is the option of going gluten-free, which is way easier than the SCD diet. If gluten-free doesn't provide enough relief, you can always "UP IT" to the SCD diet. I'm sorry, but I'm not as familiar with the Maker's diet - I think it's the only one I HAVEN'T tried. I'm just starting a gluten-free diet myself, but if it doesn't provide relief I'll be trying the SCD diet again before I give up. The last time I tried the SCD diet I wasn't receiving any other treatment and was in really bad shape, so I don't think ANY diet had a prayer of helping during that time. I'm willing to give it another go if I have to.
One thing that I wish I would have known before starting my diet modifications though - I wish that I would have taken the time to have official testing done for Celiac's disease and/or wheat intolerance. Apparently once you've begun the diet they can't accurately test for these allergies based on the fact that you've eliminated them from your body. Just an FYI if you start digging around with the diet stuff.
You could always gradually try out a diet change... going gluten-free or going on the SCD diet really involves more elimination of foods than introduction, so as long as you guys were vigilant with some kind of food-diary - you could always stop if things start to get sketchy. Everyone keeps telling me it'll be a while before I see some results, so I'm making sure that my symptoms don't deteriorate in the mean time - but I'm keeping an optimistic outlook that in a few weeks I'll really be able to notice a difference.
Sending my best to you and your hubby!
26f, dx'd CD July '05 after 6 fistula/abscess surgeries
Currently running on Humira and Hope.
(miscarried at 13 weeks, now waiting to heal before trying again)
"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."
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Date Joined Aug 2008
Total Posts : 47
Posted 9/4/2008 3:24 PM (GMT -6)
Thanks for your concern.
Some days it seems the more I read the more confused I get. I am begining to think he has UC not CD!?
Maybe someone out there can give us some ideas as he goes to a new DR on the 10th and they will refer him to a new specialist...may take months as it's the VA.
His last Dr did 2 colonoscopies in '06 within 2 months and this flare did a CT scan. Other than that it's literally been "try this med. if it works it was this DX" So he has been DX on symptoms alone. And they treat both so simularly.
He said a flare doesn't start with food...which I read somewhere today they don't anyway. He said he will be straining and it causes some blood and then after a few weeks of that it turns into a big flare. I told him we should take him to have a colonoscopy done during those "few weeks". When he had the last colonoscopy done they said "it looks like hamburger meat", but that was during a pretty bad time. All the biopsies were "inconclusive".
I am going to take your advice and work on the diary for him (secretary, SMILE). I'm not sure what we will have to do to get the tests run for Celiac and wheat intolerance, but I know that removing milk has helped.
We are switching to SCD gradual instead of jumping into it. Partly because of cost and partly because he likes food! If I took all his likes he would probably go into depression or knock my head off - because of the prednisone (JK). He HATES yogurt...this is the fun one. I have to figure how to doctor it so he will eat it =O) without sugar! (He may die without Double Stuff Oreos!)
It's a challenge, but HE'S WORTH IT! and it gives me something to do.
I spent all day yesterday making natural chicken broth and canning it, and canning carrots from our garden - for him. I think I'm kinda attached after 21 years with him. He just decided to test the "in sickness and in health" over the past 5 years - it was cancer before this.
BTW, patientspiders, I also "miscarried" - at 14 weeks (in 1992)...if you want to email me I have a beautiful testimony, if you want to hear it. We currently have four "little ones", two before and two after. But they are all big now - 20, 18, 14, and 12 ...
Husband Diagnosed CD '06:
secretary, cook, researcher, housekeeper, wife, nurse, comforter, etc.
and loving every minute of it!
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