What should be my next course of action? Help appreciated!

[katinchatt]

Morning All,

OK ~ 3 weeks now on the 9x day Pepto, plus Lomotil and Librax. Over the weekend I thought I was wise enough to take myself off all meds due to being enlightened, but failed miserably and am now in the dark once again....

Husband is DEMANDING that I make an appt. with my GI and tell him what he can do with the Pink Pills and that I should now ask for Phase 2 treatment, please.

Question is; what would be an appropriate Phase 2? I'm all for the path of least resistance, least side effects with the most bang. What should I ask for? (Unfortunately, I WILL HAVE TO ASK) as I don't think he will know, himself. What is between Pepto and Entocort for example? The latter seems to be a last resort, in some cases.

What has worked/is working for you guys? I just want a fraction of my life back, the way it was just a few months ago.
3 weeks ago when I first began all of the above meds , within 2 days I saw results, however now after my (very long weekend) 5 days back into treatment I'm not seeing any results...as if I'm not taking anything. This has me concerned, so I think I do need Phase 2, any and all help, and suggestions are appreciated! Still loosing weight as well (naturally) almost 30 pounds in 2.5 months, that's not good! I do eat, and "safe" foods at that, but ALWAYS regret it.

Pretty bad when Comet & TP are always on the TOP of the grocery list,
Kat

[Polly]

Hi Kat,

If I were you I'd opt for the Entocort. It really isn't the last resort - that designation would belong to prednisone, Imuran, etc. With Entocort, 90% of the steroid is NOT absorbed into the body. This is a major plus over prednisone, virtually all of which is absorbed. Entocort was not available 8 years ago when I got MC, but I would not hesitate to use it now if I had a relapse. I was able to go into remission on diet alone, but it took many months in order to identify my multiple food intolerances and eliminate them. Members here who started both Entocort and diet at the same time have gone into remission much quicker. Without diet you will likely need to be on Entocort indefinitely, but those here who are on longterm Entocort seem to do just fine.

I LOVE your avatar - very creative.

Keep us posted.

Good luck,

Polly

[katinchatt]

Thanks Polly,

Not sure why I thought Entocort was a last resort? I broke down and made an appt. with my GI after all. I was feeling confident with my PCP treating me, but ultimately, long-term feel a GI on my side may be necessary. After this visit, if he doesn't think I've taken too much of his time, and offers me a little relief in some form, I'll continue, as needed.

Thank You,
Kat

[tex]

Kat,

I agree with Polly 100%. The "best" in-between meds are probably the 5-ASA meds, (Asacol, Pentasa, Rowasa, Colazal, Lialda, etc.), but they are very inefficient at bringing remission. They are more useful as a maintenance med, for patients who don't want to remain on a corticosteroid, (even at low doses), for the long-term. The 5-ASA meds are not without risk, however, as some patients develop chronic pancreatitis with long-term use of these meds.

Properly used, Entocort is safe and effective, in about 65 to 70 % of cases. It is as effective as Prednisone, without all the draconian side effects. It's your best, (and safest), shot at achieving remission, by the use of a med. If you stay with the diet, (and fine-tune it), eventually you will be able to taper the Entocort dose down, and discontinue it completely, while remaining in remission.

Tex

[tex]

One other thing: If you want relief ASAP, then Entocort is the only game in town. Prednisone would also work, but probably no better than Entocort, according to trials with Crohn's and UC, and since Pred is a systemic steroid, it has a lot of bad side effects, so that most people who try it, swear that they would never do it again, unless their life depended on it.

Tex

[katinchatt]

Thanks Tex,

Yes, ASAP relief is being requested. The way I feel right now I won't take no for an answer, in asking for Entorcort. Of course I'll have to wait until next Thursday to see GI, but that will do, I may be crawling, but I'll be there.

For some unknown reason these D meds aren't doing the trick, not like they were initially. Early on 4-6x a day was a blessing! Now, after 5 days back on, it's min. 20x, tho Sat. was 30x. Just this afternoon I got over that 24 hr. flu feeling, so maybe I'm on the mend and actually did have a little "bug". Hard to say, but am arming myself with info to "share" with GI, trust me, he'll want me out as fast as I want out. Other than that, I really don't have much else to say to the man, am even considering a follow-up call to his NP to see if she will just call it in, won't hurt to try. Will let you know.

Thanks for all you do,
Kat

[hazel]

Entocort brought my MC under control (in 2003) and I took it for a year or so. The only side effects I remember were I bruised more easily and got muscle cramps occasionally. It was well worth it! Since then I have occasional flares that seem unrelated to anything and they usually pass (haha) within a few days. I don't seem to have food issues--my MC came on from overuse of anti-inflamatories for joint pain. Since I had my knee replaced in 2005 I have been able to get along with only tylenol. Good luck!

[katinchatt]

Kathy,

I sooooo hope that you and I have the same story, and outcome!!! You have no idea! Mine I'm "pretty darn sure" was brought on by Nexium. Off that stuff 4-sure. Like I told someone in an earlier post: The thought of having to give up so many comfort foods is as frightening as having CC. Time will tell.................


Fingers crossed,
Kat

[harvest_table]

Question is; what would be an appropriate Phase 2? I'm all for the path of least resistance, least side effects with the most bang. What should I ask for? (Unfortunately, I WILL HAVE TO ASK) as I don't think he will know, himself. What is between Pepto and Entocort for example? The latter seems to be a last resort, in some cases.

What has worked/is working for you guys?

Hi Kat,

Following my Dx of CC I took a number of meds that actually made my symptoms worse, asacol, colazal and something else I don't recall the name of at the moment. What really brought me out of the woods was a 2 month round of pred- it kicked butt on my ailments but shortly after I weaned off the med my symptoms returned. I followed that with Entocort and started a gf diet at the same time. Entocort posed no real issues for me (like some others here) and I was able to wean off it at 6 months.

It's now, 4 years later (which is so hard to believe) and I've been maintaining my health on diet alone. I agree with the others that Entocort will give you the biggest bang for your buck. It's sure worth a try.

Love,
Joanna