Advice?

[Beth]

Hi everyone,

I'd love any input you could give me right now. I'm really constipated, and I don't know what to do about it. I've been taking a lot of vitamin C, but that's not doing anything, and so this morning I finally took a stimulant laxative - it's a bisacodyl 5 mg tablet, but all I'm feeling is headach-y and increased cramps. Today I ate an orange and an apple and a banana with a boiled egg for breakfast. For lunch I ate some buckwheat with steamed spinach and zucchini and fresh tomatoes, and I added a little flax seed oil. Also ate 2 boiled eggs with my meal for protein. I'm at my graduate residency right now, so I'm cooking all of my own meals and bringing them to the dining hall, which is great because then I can have full control over my food intake. I just wish I felt better. Still taking the entocort, but just not feeling so hot. Ideas? Suggestions?

Thanks,
Beth

[artteacher]

For me, a Tblspoon of MOM (the original type, not flavored) with a full glass of water before bed works like a charm, with no cramping. All it does is osmotically draw water into the bowel. It shouldn't give you D, or cramping, the way other products do.

Love, Marsha

[tex]

Beth,

Well, this is sorta out-of-the-box, but you could probably stop taking the Entocort, and the MC will purge your colon, after most of the budesonide works its way out of your system. The problem is, I'm not sure what the persistence of budesonide is, so it might take a day or so. There is probably still some small amount of prednisolone in your body, also.

Maybe the stuff you took, just needs a little more time. Eating some prunes might help.

If you should happen to decide to try epsom salts again, I trust that you will reduce the dosage level appropriately.

In an emergency, You could use one of the colonoscopy preps, but I would consider that to be a last resort, since it will do a pretty thorough job, and you really don't need that, at this point. Don't try this until after you've tried Marsha's suggestion without any success.

Are you taking anything that might promote constipation, such as Caltrate, for example? I assume you're not eating any cheese, since you're avoiding dairy. You may have a problem with slow motility, or you may need more fiber in your diet. Are you drinking enough liquids?

After you get straightened out again, you probably need to add more fiber to your diet, and/or drink more liquids. You might even try using less Entocort. Since you were having the problem before you started the Entocort treatment, though, I would assume that Entocort is not the primary problem - this is a prior problem, probably a long-standing problem. Isn't it?

Do you happen to have a copy of your endoscopy report, (colonoscopy exam report)? If you do, does it show any mention of a stenosis in your colon, or any other abnormality that might behave as a blockage, or a partial blockage?

Hope you get relief soon.

Wayne

[Beth]

Hi Wayne,

Thanks for your advice. I am definitely drinking a lot of water and tea with lemon. And I've been working on getting a lot more veggies and fruit into my diet. Still no "movement" (no pun intended), so I took another ex-lax in hopes that tomorrow will bring relief. If that doesn't work, I'm heading to the nearest drug store to get some MOM. Thanks for the advice, Marsha! And Wayne - yes, I'm not eating any dairy. My diet is actually almost perfect from a paleo view except for the occasional potato. And as far as the long-standing problem, no this hasn't been an issue for a very long time because I was eating gluten for many years, and that did a very good job of keeping me regular. "~ Does anyone else think I should go off the entocort and see if that makes a difference? I'm a little nervous to do so since I'm away from home and really don't want to have a flare again, but maybe it would help in the C department . . .

Thanks,
Beth

[tex]

Beth,

I suggest you try the traditional remedies, before you do something as radical as putting the Entocort program on hold. That would be sort of a drastic measure, though I would certainly consider it to be an option if nothing else seems to work.

There's always, mineral oil, though I don't have any idea what a proper dose should be.

If worse comes to worse, and success remains elusive, before you go to the ER, there's always the old standby, 'readymade" enemas, of various types, (that is, filled with various fluids). I would assume they are available OTC, though I'm just guessing. I recall that the clinic issued me a couple of them, prior to my first test, which I believe was a sigmoidoscopy. I don't remember if they were preceded by anything else, or not, but they certainly got the job done, in a matter of a few minutes.

Wayne

[bobh]

Does anyone else think I should go off the entocort and see if that makes a difference?

Other than "spasms" and feeling like my bowels were tied in knots between episodes of "explosive D", I never really had true constipation.

If I was in your shoes, concerned about constipation, I would REDUCE the dose down from 3 Entocort (because you are not manifesting inflammation) but I wouldn't STOP it.

I would personally look at it like the controls of a car, you step on the gas, or put on the brakes.

But due to the fact that you were recently fighting against a bad flare of "D" and unable to keep food in the body, I would not stop the entocort. That would be like taking all the gas out of the tank. I'd keep some fuel in the tank, but lighten up on the gas pedal.

[harvest_table]

Beth,

I've only experienced chronic and sometimes nocturnal D with MC, never constipation or cramping pain so don't have much to offer other than my sincere sympathy and support.

But due to the fact that you were recently fighting against a bad flare of "D" and unable to keep food in the body, I would not stop the entocort. That would be like taking all the gas out of the tank. I'd keep some fuel in the tank, but lighten up on the gas pedal.

That's a good way of looking at it Bob. I was thinking along the same lines.

Beth, before you began these medications and way of eating to find relief you were at your wits end with D, the opposite of whats happening now. So, in your mind do you feel like your making some kind of progress?

Take care and hang in there.
Joanna

[Beth]

Yes, I suppose I do feel like I'm making some progress. It's just that I want to feel better NOW, if you know what I mean. And being here at this residency is absolutely exhausting. On top of that, I can't seem to sleep more than five and a half hours at time, which really messes up my schedule, because then I have to nap again during the day and miss out on a lecture or a meeting or a reading. Trying to be patient. Last night I actually had a BM and know there's more to come - so progress!

Bob - I've been on 2 entocort/day. Do you think I should reduce it to one and see what happens?

Thanks, everyone.

[bobh]

Bob - I've been on 2 entocort/day. Do you think I should reduce it to one and see what happens?

Glad to hear you reduced it from 3, with the recent constipation.

I have read about alternating C and D, but haven't had much personal experience with constipation.

For 15 years I would have horrific D (sell tickets, make a record, sell the video on the Internet). then there would be occasional weeks or months of relief - but not constipated.

In my earlier example of driving a car, I should have said that Entocort was like the brakes on the car. Prednisone and Entocort are both "anti-inflammatory steroids". Colitis is an inflammatory condition of the bowels, we have an inflammatory bowel disease.

Personally, my bowels were so inflamed from a 6 month flare, that when I started meds on September 5th 2006 it was like putting on the brakes and stopping the car that was flying down the road, out of control.

Immodium is like a "cork" and it can provide TEMPORARY relief from D. If affects "motility". I don't look at Entocort the same way, I wouldn't think that it would "cork" you up - it should be focused on controlling inflammation. But If I suddenly shifted from D to C, I would have to assume that the inflammatory condition changed somehow. Like you've been driving down the side of a mountain, hitting the brakes as you go around all these tight curves, then all of a sudden you get a long straight stretch of highway - and don't need the brakes.

Personally, I would reduce the Entocort even further (from 2 pills a day to 1). I would be very, very alert for signs of inflammation. I can feel it in the descending colon and rectum, and use that as a "speedometer" to judge if I need 2 or 3 Entocort a day. I catch the problem before my bowels get too loose. I know my system, and that it would go totally out of control if I let it.

I would NOT STOP the Entocort, and maintain SOME of it in your system, even if it is just one pill a day. I saw my Dr. last week, after 4 months of freedom from Colitis. We discussed the awareness of some inflammation, accompanied by slightly looser bowels, and that going from 2 to 3 pills kept it from turning to Diarrhea.

He stressed that people should NOT STOP ENTOCORT unless they have been absolutely SYMPTOM FREE for 3 months.

Right now you have C. 3 weeks ago you had D, and you might have D next month. Every time there is inflammation, you should note it on your calendar, and that resets the clock for 3 months. In other words, even though you don't need to hit the brakes today, or this week, it is important to keep the inflammatory condition under control - and this is an inflammatory bowel disease.

[bobh]

.. a Tablespoon of MOM (the original type, not flavored) with a full glass of water before bed works like a charm, with no cramping. All it does is osmotically draw water into the bowel. It shouldn't give you D, or cramping, the way other products do... Marsha

So there you have it, Milk of Magnesia to help with the Constipation, increase the Entocort when inflammation is causing D.

And as Mathew often points out, I think it is important to find some happiness here and now. (go for a walk, find something "good" to think about.) John Lennon once said "life is what happens when you are making other plans". I am amazed to still be alive, had a couple near death experiences, and often forget to "be happy" when I am feeling miserable. I have to work at it - but find it helpful to do.

[Beth]

Thank you, Bob. I really appreciate your advice, both about the entocort and about remaining happy. I'm doing pretty well in the happiness department, but when I'm not feeling good, as I haven't been for the past few days, the happiness meter waivers just a bit. But good reminder to keep my chin up. At least this is a manageable disease!

Best,
Beth

[bobh]

... At least this is a manageable disease!

Well that is really a great milestone for both of us. If you asked me 5 months ago if this was a manageable disease - I would experience an overwhelming feeling of despair as I tried to search for words - where to start. Hell no it wasn't manageable. It was something that I had no control over.

If I knew I had to drive somewhere the next morning, or a mission critical employment thing, I could "delay" the diarrhea by taking lot's of immodium and Pepto Bismal, etc. But it wasn't a cure, and the bad flares would show me how weak and powerless I was against this condition.

I don't feel that way anymore, and can manage the "symptoms" of this disease with Entocort. I have no insurance, and the retail price of the pills are about $5 each in the USA. I just got a shipment of 200 pills from a Canada Meds web site for just under $2 each, which makes me feel even more powerful in my ability to manage this condition.