How to tell if Entocort is working

[Regular Joe]

I've been on Entocort for a little bit better than 3 weeks. I think it's working. No, I know something is working.

I haven't felt fatigued in 3 weeks! The D has definitely stopped, but my "movements" are somewhat loose but actually have some formation now - no longer porridge, and down to 2 a day.

I still get a day of depression from time to time, and the cramping seems like it will never go away, but those are really the only two symptoms that still seem to be hanging on. But that is manageable. Oh and I haven't had any unpaid time off from work in this pay period. That's a first since since January!

But here's the real duesey...I have been slightly careless with what I've been eating. I got a real good dietary guideline from a dietician affiliated with my health insurance company. She's also scolded me for "bad choices."

I had an Oreo "McFlurry" last night. I'm alive to tell about it! I got a few cramps, but not more painful than my morning cramps. I also just dumped my face into a melon/banana/fruit cocktail fruit salad. Like a buldozer with my face first, and I didn't stop until I was FULL! That was a lot of fun, to walk away dripping and all. I don't know why I did that, but I just felt the urge and let loose. No problems at all, probably because the fruit salad was per the dietician's instructions.

What seems unusual, but good, is that I seem to have my "normal" appetite on more days than not having an appetite. I guess my appetite hasn't felt this way for a year - so what was normal now feels unusual. I also am beginning to feel "human"....that is once again, I feel like a "part of", and not "apart from" the human race. That's not every day yet, and it's taking some getting used to.

I have another 2 months left with Entocort therapy, but I also have colonoscopic surgery scheduled in about 3 weeks, which I'm kinda worried about. It's a pretty big "nodule" and attached flat to the colon, not on a stem. Maybe I'll put off that worry for a couple more weeks?

So I'm giving a "green light" to Entocort which is a great relief to me. I can live with Entocort side effects and it's "slow moving" lightweight steroid help. I've also added a couple "extra" treatment variables since I started on the Entocort. I've increased my Lyrica dose (as directed), and I've added a morning dose of "omega 3" (fish oil; sqeezable orange-flavor stuff from Vitamin World).

Friends, what do you think will happen next? I mean if this flare is actually becoming tame, what should I expect to use to maintain it? Maybe it's premature to ask now, only a month into therapy. But after living a year in hell with this disease getting progressively worse, I notice a definite change in course.

I'm a little reluctant, but I'm becoming more hopeful each day. So what's next?

 

[Astra]

Hiya Joe

I'm on week 3 of Entocort too! I feel really well, eating well and have no D, sleeping well and not so much fatigue! I taper to 6mg on Monday for a month, then 3mg. Glad you're feeling better tho.
My maintenance drug is Pentasa, been on it 5 years now.
Not sure what's next for both of us??

 

[Manzyb]

hey there! Glad to hear that you are starting to feel good! As for what's next, I guess it just depends on what your doctor thinks is right. A few years ago I got in a really bad flare and they put me on Humira, I felt awesome pretty instantly and started to live my life normally again. I have been on it every since. I guess they could put you on a maintenance kind of drug like Pentasa or Humira, something like that.

Don't be too reluctant to enjoy your time of feeling well. I know sometimes when I start to feel good I get scared because it seems like I take a step forward and then two steps back. Enjoy your good days, and if you have a bad day, don't let it get you too down in the dumps.

how do you like the fish oil? I seem to burp fishy tastes when I take it! For supplements I take some digestive enzymes before every meal and I take this stuff called Juice Plus+. It is dehydrated fruits and veggies that are grounded into powder and put in capsules. If you cannot eat much fruits and veggies it is a great way to get your daily intake of them. I take double the dose every day and it really has boosted my immune system and makes me feel great.

Are you big on exercising? If you are feeling up to it, try and do some cardio or something to get your blood pumping. I try and do cardio every day, even if I am flaring b/c it just makes me feel better and less sluggish.

Sorry this is so long! Not sure if there was any info in there that can help you :0) I hope you continue to feel better, relax, an enjoy your good days!

Amanda

 

[BLM]

Hey Joe Ive been feeling well for the past several days....no d, formed and normal bms....felt great, but then I made a mistake and ate freely last night....fettachini alfredo and a few bits of ice cream....Im payin today.....YUCK!!

 

[MapleLeafGirl]

I think it really depends on the doctor and what they have tried in the past. For me, after the prednisone, the Imuran has been my maintenance drug. I think I tapered off the prednisone too soon though as I had a really rough period about three weeks after I finished, but I think things are evening out now. We'll see, just waiting for some blood work results.

 

[D Bergy]

I am glad you are improving Joe. It is nice to get some relief isn't it.

I agree, that you should enjoy it and do some of the things you have been wanting to do, but did not feel well enough to do them. I go like a mad man when I feel good, which is almost always now.

I started using Krill Oil as there is no fishy taste, and you do not need as much of it for the same benefit.

Dan

 

[Regular Joe]

Thanks friends...lotsa good ideas. Funny, I had some "inner dialogue" or maybe an "inspiration" that is pointing me in the direction of getting back into cycling (which I haven't done in a year), and to also get back to strength training. I know many of you know how it feels to be going full-steam in your excercise routine, then BAM, you get flared, then months go by and you can't perform and fall out of it. It becomes a "drag" to think about restarting, but heck, it's what has kept my ol' ticker performing top-notch even during this flare. The good part is I still have endurance and don't get winded too easily.

Dan...Do you have a thread or sources that get in-depth about the clinical mechanics of LDN, and it's "efficacy" in maintaining CD remission? My GI is the curious type, and he's active in CD research and peer publications. If I can present something palpable and specific to him, he might be willing to try me out with LDN.

The bigger and better part of the picture is that he'll actively monitor me, and if he notices something significant that he hasn't seen before, he'll dig into it with his passion about Crohn's, and also with the blessing and funding of the Cleveland Clinic.

About the "fish oil". I forget the brand name, but it comes in packets and is sorta "creamy". I know it sounds gross, but they figured out how to conceal the fishy taste - there has to be science behind the way they concealed the taste. The "cream" can be mixed into yogurt, or even into a drink. It just adds an orange taste to whatever. I just squeeze the packet into my mouth most of the time, it tastes pretty good.

But it's definitely the "real deal" - it feels oily on your fingers (it's also orange in color). When it's real hot and humid, and it sits out exposed, the fishy smell becomes evident. Get the picture? I sometimes forget to throw away the packet and it sits on my sink counter all day when I'm at work. Yup it's fish oil by the time I get home.

 

[Meltric]

Your success story is making me very happy! On day 2 of entocort and as this is my first ever crohn's med I've been very nervous.

I have a question, though, how long until you first started feeling the effects? Was it not until the 3rd week? I'm so anxious to be well!

 

[Regular Joe]

Hi Meltric,

As I mentioned before, I never "felt" a noticeable "clinical" effect that just gave me an "Ahhh I feel better" type of well-being, like when you have something like a sinus infection and you feel the antibiotic's effect.

I just remember after two weeks, thinking back. I still had cramps, loose bowels, anxiety, and moodiness. But thinking back to before I took the Entocort, every single symptom two weeks before was worse. So after two weeks I didn't start "feeling better" or "feeling the effect" of Enticort.

It was a "cognitive" thing. I sat there and thought to myself (after two weeks) when is this damn cramping going to end? My bowels were still porridge, so I was asking myself is that ever going to harden up?

Then I became more and more reflective. "Getting better" required that I think and recollect. I thought to myself, well nothing has been so bad that I had to miss a day of work. And no, I wasn't having more than 2-3 bowel movements a day. I said out loud, "Then I must be getting better."

You see what I'm saying? I still had the symptoms, they just weren't as severe.

Then another "thinking" moment occurred at work. I turned my time record, and there wasn't any "non-pay" time off that I had to report. Then I thought to myself, hell, when was the last day I was absent? I paged back through my calendar, and it was the day before I started the Entocort. Once again it was a cognitive realization, "I must be getting better" because I hadn't stayed home because of pain or fatigue.

So in the third week "getting better" was now a conscious reality - not a "feeling". I thought back again yesterday, "man I don't remember having any fatigue for awhile now". So that symptoms was gone. Then I went through the symptoms before the Enticort. The back pain had stopped. The flank pain had stopped. The fatigue had stopped.

Over the past two days, the bowel movement was still loose, but it was formed and not porridge. I ate ice cream and I didn't get deathly sick. I had some brocolli, and BOOM, yes I had an explosive D, but that was all for that day (yesterday) - yes it was 3 movements, and the last one was D. But today it was back to two and loose but formed again.

SO it's like the "light bulb" going on and realizing things are getting better. But I still wake up with cramps, and that kinda throws me off because cramps are painful, so I don't "feel better" - I feel pain in my abdomen. But the pain is manageable, and the other symptoms are under control.

Hope that makes sense?

 

[BLM]

WOW Joe!! Thanks Buddy, that totally makes sense to me. I can completely understand what your talking about....Im going thru the same thing right now....you put it very nicely!!

 

[crohnicaly stinky]

Joe, Glad to hear about the Entocort and that you are feeling better!

 

[Meltric]

Thanks for the reply, Joe! It actually makes complete sense to me, too.
It wasn't a sudden, drastic, change, but a change nonetheless! I look forward to hopefully being in your shoes 2 weeks from now.