Setback - Frustration & Patience

[Joefnh]

Well this was the week that I was to begin tapering off of Entocort with the hopes of being able to handle the crohns and CC with diet and maybe some basic meds such as Imodium or Questran. I began the taper schedule my GI setup which was 6mg for 2 weeks then 3mg for 2 weeks. This appeared quite quick compared to Ants and others schedules which I discussed with him but he was not willing to try a longer taper schedule, and I was being prescribed the amounts for the doctors schedule so it was time to give it a try.

It should be noted that I have been strictly following a slightly modified version of the Gabes diet which is GF/YF/DF/LF for the past 2 months, overall I have found that the diet portion of treatment at least as important as the medications.

I began the taper schedule last Sunday after returning from vacation and I noticed by the 3rd day of the 6mg dose the stabbing pains returning, and by day 4 the D, pain and fever has returned with a nasty vengeance. The scary part is that bleeding has also appeared as a new symptom, so it was off to see the my doctor and after a thorough exam including a sigmoidoscopy (unplanned). He has placed me back on 9mg a day for an additional 2 months and is talking about the nastier meds (Immuran, Remmicade) should we not be able to bring the crohns and CC into remission with the entocort, although I am not willing to take that type of med unless absolutely necessary

The good news is that he has a pretty good understanding of the dietary aspect of this disease and was glad that I was following the Gabes Simplified Diet (GSD). I even brought him a copy of Gabes post, although he was more concerned with eliminating gluten as the main aggravant.

So at this point I feel like I'm spinning my wheels but I know that many of the posts here talk about a much longer recovery / management schedule. I guess my hopes were for the combination of the strict diet and the meds would bring about remission a bit quicker.

Well its time for a bit more patience and perseverance.

Thanks again to all on this site who have been so informative and helpful

--Joe

[mbeezie]

Sorry to hear that Joe. I sure understand the "spinning my wheels" feeling.

It may be possible you have some food sensitivities that are different from Gabes. You might try eliminating soy, or corn, or eggs . . . Tapioca is a big trigger for me and it is in most GF products so I couldn't understand why I wasn't achieving remission on GF/DF/SF (per my enterolab results). But once I removed all triggers then remission came quickly. I know it's the last thing you want to hear, but I suspect you still have some intolerances. Have you tried a paleo diet? Did you do enterolab testing?

Mary Beth

[Joefnh]

I believe the Gabes diet is Paleo in nature, 3 meats, white rice and 3 veggies that's it. No soy or eggs etc.

Check out http://www.perskyfarms.com/phpBB2/viewt ... ing+corner

I think this is about as simple as one can get. I did notice that any soy gave me issues and even eliminated that from the ingredients list.

Mary Beth this can be so much fun...

I will keep looking for some clue as what to eliminate next. I wonder what happens when you stop eating all together?? LOL

Thanks for the response

--Joe

[tex]

Joe,

If the bleeding is a new symptom, there's a possibility that you may have picked up a C. diff infection. Did he request any stool samples for a culture test? Increased cramps, bleeding, and fever, are C. diff symptoms. Of course, Crohn's can cause those symptoms, also, so this is kind of a tricky situation.

The reason I'm bringing up the possibility of a C. diff infection, is because it is unexpected for your Crohn's symptoms to become so much worse, while you are taking Entocort, even at a reduced dose. You shouldn't have relapsed so quickly, and so severely, IMO. IOW, it suggests that something else might be going on. He wouldn't have been able to see any effects from C. diff, during the sigmoidoscopy. However, he would have been able to see any increased Crohn's activity, if you have visible lesions, in your distal colon, (the rectosigmoid portion of your colon). Typically, though, Crohn's is more prevalent in the proximal colon, (and the distal ileum), and UC, of course, is usually restricted to the rectosigmoid area.

Not having a copy of his exam report, we can only guess at what he observed, and recorded. We have to hope that he knows what he's doing.

Tex

[Gloria]

I've used this expression on the board before "Never underestimate the power of Entocort." You are on the right course, and showing results, but the gut takes much longer to heal than any of us would like. It's a long, slow process and you probably have more damage than the rest of us because of Chron's.

It's great that your GI acknowledged that diet is an important factor. It's also good that he's extended your Entocort prescription for another two months. That will give you more time, but in reality it will probably take longer than that. The tapering process alone should be done very slowly to allow you to gauge your progress and reactions so that you can adjust your diet accordingly.

For now, I know you're grateful that you have Entocort, as all of us are who are taking it. I admire your ability to stay with your limited diet - it should pay off in the long run.

Gloria

[Joefnh]

Tex stool cultures were taken today and biopsies were taken at the time of the scope. Overall he wanted to do the scope because of the bleeding and the updated biopsies. My crohns is in the ileum and middle portion of the small intestine. He was also concerned about C diff and the cultures should help determine if that's an issue. Overall the bleeding is new in the sense I have never had this much. The fever is not new, that was one of the diagnostic indicators early on.

Gloria I have found that adhering to a strict diet is quite important and without it I'm quite certain things would be worse.

--Joe

[tex]

Joe,

Good, it sounds as though he's on top of the situation with the tests, at least.

The bad news is that the Entocort EC is probably totally missing the inflammation in your jejunum, because it doesn't usually activate until it reaches the ileum. That suggests to me that if you continue to react, (in your jejunum), an immune system suppressant may be necessary. I'm not aware of any decent inflammation-suppressing drugs, that target the jejunum. While Prednisone would probably handle it, it's definitely not a long-term option, so like me, you're facing some tough choices, regarding drugs.

Best of luck, trying to resolve this. Hopefully, the diet will soon kick in, and preempt the need for any immune system suppressants.

Tex

[Joefnh]

Thanks Tex, I was unaware that the Entocort will not activate earlier in the small intestine and I wonder why he is choosing this med if it does not work on all the affected areas.


-- Rant On --

This Sucks!!

-- Rant Off --


Sorry I needed to get that out at some point, it was a long day

Thanks again Tex

--Joe

[harma]

Sorry Joe for the setback and the new symptom. Of course that sucks, you were doing so well!!! I didn't know you had crohn as well. For what it is worth Joe my advice, I am not you and have no crohn: I have experienced, even after almost 7 months diet, I still need my entocort. So mabye your tampering down was just to early. Now you are back on the medications, give it at least 3 days to a week to feel "your old normal" self again. In the cases I forgot my medication (happened twice) it took up to 5 days to get the rest back in my bowel. Last time was two weeks ago.

I hope it will get better soon and really that you don't need other medication. Wish you all the best.

harma

[ant]

Dear Joe

Sorry about your setback and new symptoms. You have a great stoical attitude and a "this sucks!!" rant is entirely in order.

Best wishes, Ant

[MaggieRedwings]

Morning Joe,

So sorry to hear about the setback but definitely happy to hear that you have a doc that listens to what you say, acknowledges diet and gluten and is working with you . They are a really rare breed. Hope things turn around for you and you start to feel better. Ranting is always good for the soul.

Love, Maggie

[kimtg68]

Oh Joe! So, so sorry about your dissappointments. I'm so glad that your doctor seems to be really educated on your illnesses. Are you going to talk to him about your question with Entocort not activating in the small intestine? ANY time you need to rant you can always come here and get it off your chest I think everyone here would completely understand.

[tex]

Joe,

Actually, since 10 to 15 % of the budesonide in Entocort EC is absorbed into the blood stream, you are getting a slight effect, just not enough to get the job done. Your doctor is between a rock and a hard place, regarding the drugs, because there are no good corticosteroid or 5-ASA options for treating the duodenum or the jejunum. Those sections of the small intestine are where most of the absorption takes place, so all encapsulated drugs are designed to get past there, before becoming activated. Something like Prednisone is an option, but we all know of the risks involved with it. Still, it would probably stop your reaction very quickly. (However, since you already have a base level of budesonide in your system, adding very much Prednisone at this point, could carry an overdose risk, since the corticosteroids carry a cumulative risk).

Your doctor should know if there is a form of mesalazine available that would be more available in the jejunum. Among the many brands available, (including some new ones in the past few years), there are various mechanisms used for delaying the activation of the active ingredient, and one of them might be more effective for jejunal, (is that a word?), Crohn's disease. Anyway, that's one possibility, and it probably could be used concurrently with Entocort, so that your MC would stay under control in the meantime.

There's one other option. Trials have shown that the labeled dose of entocort can be "safely" doubled, (to 18mg per day), without significantly increasing the risk of side effects. Doubling the dose was shown to increase the effectiveness of the treatment from approximately 65% to 75%, as I recall, (for resistant cases of Crohn's). (Or it may have increased the effectiveness from 75% to 85% - I'm not sure which set of numbers is correct, but it is one or the other). That report used to be available on the web, but I haven't been able to find it for several years, now, so AstraZeneca may have taken it down. As I recall, it was an official trial report, which was submitted to the FDA, back when Entocort was being considered for approval. Most GI docs, however, have never heard of it, and probably wouldn't be willing to consider it, (for liability reasons), since that dose does not appear on the label.

Tex

[Rosie]

Joe, I'm really sorry to hear about your setback. You are doing all that you can, and it sounds like your doctor is one of the better ones, so hopefully you'll get your symptoms back under control soon!

Rosie

[Polly]

Oh Joe,

That really DOES suck. I'm so sorry to hear about your flare.

You may rant and rave all you want! We DO understand. Bleeding is always scary. Did you lose a lot? I assume the MC looked OK on sigmoidoscopy - and of course, the doc wouldn't have been able to see the bleeding area in the small intestine.

If you're going to give Entocort a fair trial, you very likely will have to take it for a longer time. I would say 6 mo. to a year or maybe even more, along with diet. Unfortunately, most docs don't know this - they always seem to rush the tapering. Did you tell your doc about the experience on this board? Also, a larger dose might be warranted, as Tex suggested, which would make more of the med. available to the small intestine. Although most try to avoid prednisone, some here have had good luck "kickstarting" the road to recovery, tapering quickly and then moving down to Entocort.

Hang in there, Joe. You did SO well so quickly. Try not to be discouraged. This disease is humbling, if nothing else. As soon as we think we're making progress, BOOM, we're kicked in the butt.

Lots of love,

Polly