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Crohn's Disease
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Posted 11/16/2010 3:50 PM (GMT 0)
Hi all,

I was diagnosed with chrohn's 8 yr ago and had some minor flare up here and there, especially after my first born.  I was in remision for some time until now.  Crohn's been active for 2 mth now.  I've seen dr  and he prescribed entocort 3pills a day in am.  Besides my pentasa that is now increase to 4 tab, 4 times daily.  I'm on the entocort for 3 weeks and noticed that taking 3 pills in am was sort of okay during the day, till the evening I was in pain again.  I read here that someone experienced it as well and it helped to devide the pills, to 2 in am and 1 in pm.

Anyhow, it's seemed okay for a while but I would still be in pain random days.  Iwould be fine for 2-3 days and than pretty bad pain again.  Just two days ago I had a really bad flare up and it lasted all night, it pretty much still continues.  I'm not eating anything today.  I had one boiled egg this morning and nothing since.  I also drank ensure, but the pain still persisted.

Does anyone had a similiar experience with entocort?  I'm thinking of going onto prednisone.  Also any ideas on what foods are safe to eat when you all flared  up?  I'm stuck here, I used to eat everything before so I'm having a really hard time not being able to eat.  It's like I'm going through it all over again. 

Thank you and looking forward to some advise.

Posted 11/16/2010 4:19 PM (GMT 0)
Sky1, sorry you're not feeling well. Can you tell us anything about where the pain is? Are you passing blood?

I'd recommend calling your DR. In the meantime, you can look at low residue diets or stick with liquids (some people have problems with Ensure). An easy thing to eliminate is lactose - use lactose free milk, get yourself some lactase tablets or eliminate dairy altogether. Hopefully that will resolve some of the pain, gas and diarrhea.

Prednisone might be more helpful than entocort, but that's a discussion to have with your DR.

{{{HUGS}}}
Posted 11/16/2010 4:40 PM (GMT 0)
I agree with kazbern and think you need to talk to your doctor about this pain, although I am suspecting how it happens only every few days, that it might be something you are possibly eating.

I too also agree that Pred seems to work better for most of us, although the Entocort works just takes longer to kick in.

I personally follow a low residue diet all the time and that works best for "me". You might want to google the diet, as it is used alot when folks are flaring. Its easy to chew, and easy to digest type of diet. Good luck and I hope you get feeling better soon. Hugs!
Posted 11/16/2010 6:44 PM (GMT 0)
Thank you for your replies. Well, my pain centers around the middle of my belly. My stomach protrudes as if I was 4 mts pregnant. It's very uncomfortable. The actual pain feels like someone was squeezing my intestines for a few seconds, on and off. I think, that a lot of people with crohn's know what that feels like. I don't have any diarrhea. Last night I fell a weird sensation in my chest as well.
I have looked up low residue diet and starting now. I called dr. and hope to see him soon. My dr. is busy and the earliest ap is not for days. It's hard when you have to work on top of it. I don't know how people stay commited to jobs, family or anything when this disease takes over. Even staying positive is harder. I must say my mom is my rock, even more than my husband. He just wants me to get better and has his own coping ways with this. I have two small kids so my life needs to go on as normal as possible.
Thank you again for any advice.
Posted 11/16/2010 7:27 PM (GMT 0)
Sounds like sky1 that maybe these pains you are experiencing might be at the least a partial obstruction. This is exactly what I experience during an obstruction, and see if any of it fits you: No air or stool will move in either direction, pain comes in waves around the bellybutton much like labor pains, bloating, loud bowel sounds, and if you start getting nauseous or vomiting, then you need to get to the ER asap. If this is what you are experiencing, then I suggest the next time it hits head to the ER.

If your GI is that busy, maybe try getting in with your family doc in the meantime. No need to suffer for so long. Hugs!
Posted 11/16/2010 9:29 PM (GMT 0)
What Nanners said: it could easily be an obstruction, and please go to the hospital if your symptoms worsen. And don't forget that you can also see your GP.

Also, if you are continuing to have problems on the Entocort, it might be time to think about going onto a stronger medication, such as an immunosuppressant. You might like to discuss this with your doctor, or you may find that he raises this himself.

All the best to you. I hope you feel better soon.

Ivy.
Posted 11/17/2010 11:58 PM (GMT 0)
Yes, Nanners that's what I have experienced. I'm kind of new at recognizing what is at a danger point. I had to miss my work today, but was able to schedule dr. ap. for tomorrow. So, I'm happy to describe all that to him and go on my next med. I don't know how it can go from alright to absolutely bad.
I did go to the hospital once around 10 pm when this whole flare up started about 2 mth ago. I was sooo much in pain and the people in the hospital didn't take it seriously. I was there till 1am and walked out without seeing a dr and any treatment other than an exray. I basically started to feel better and was too tired to wait, they said it could be all night. I was very disapointed and surprised how this can happen. I guess, I wasn't serious of an emergency for them.
Posted 11/18/2010 12:18 AM (GMT 0)
Sky I think you might discuss biologics like Remicade with the doctor also. Cost is a factor but if you are well insured it is doable.
Posted 11/18/2010 12:24 AM (GMT 0)
Thank you FunGuy for your reply. Do you think I should go on Prednisone first or try Remicade right away?
Posted 11/18/2010 12:41 AM (GMT 0)
I think the Dr. could answer that better but the Remicade takes awhile to start working so if you can do both the Prednisone should give faster results.
Posted 11/18/2010 1:31 AM (GMT 0)
Thank you FunGuy, that's what I thought as well. I'm going to talk to my dr. tomorrow.
Thank you again everyone for the advice:)
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