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Crohn's Disease Forum » Support Forum » Newly diagnosed


07-21-2016, 01:36 PM   #1
Emzy93
 
Join Date: Jul 2016
Location: Norwich, United Kingdom
Newly diagnosed

Hi,

I was diagnosed 4 weeks ago with Crohn's disease, and started taking Pentasa the same day. I had bleeding before which has now stopped completely, and my tummy pain isn't as constant as it was but it is on and off. But at the minute I am just so tired all day and am struggling to get through a day of work. I have called the hospital so should hopefully be seeing someone again soon but don't know when that wil be yet.

I just don't really know how I should be feeling as I thought the tablets would help make me pain free and the tiredness go (but I'm not sure what I should be expecting by taking the tablets) or what I should be doing to help improve my symptoms and get my self better.

Please can someone offer me some help/ guidance I really don't know who to ask.

Thanks
07-21-2016, 03:15 PM   #2
Bubblemint
 
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Join Date: May 2016
Location: Mililani, Hawaii
Hello! I was diagnosed in April, and have been taking Pentasa since then. My doctor later added on a stronger medicine as well. Since last week the inflammation has pretty much disappeared and I'm not in constant pain.

I'm told that the doctors want to use the fewest and most mild drugs when possible so as not to disturb the patient any more than necessary. When you get the chance, make sure you ask what you should be expecting and if another medicine might help.

As for what you can do for yourself... diet is super important. I don't mean "eat this for two months and you'll cure yourself!", I'm talking what kinds of foods cause really bad cramps? What kinds of foods go down okay? It's different for everyone, so you should figure out what you can and can't eat.

Good luck. I'm glad you found this place.
07-21-2016, 03:16 PM   #3
ronroush7
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Join Date: Oct 2013
Location: vienna, Virginia

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I was on Pentasa ,the doctor on!y kept me on there for a brief time. He then switched me over to Lialda. When you see or talk to your doctor ask him. I don't know what your doctor might say.
07-22-2016, 05:36 AM   #4
Ally1234
 
Join Date: Jan 2016
Location: Salisbury, United Kingdom
I was put on pentasa alongside prednisolone. The way pentasa was described to me was that it's like putting a cream over the burn, it soothes the inflammation but doesn't target the cause so much and that's why I was put on prednisolone aswell. And now i am also on azathioprine while trying to reduce the prednisolone. please remember that this is a complicated disease. Everyones treatment is different and you will learn to read your body. I have been on medication for 5 months now and I still have bad days and weeks. Also please remember that just because the symptoms are gone doesn't mean that there is not damage happening on the inside. Crohns is a lifelong condition, it takes a while to come to terms with.

07-22-2016, 12:14 PM   #5
Tuff
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Join Date: Feb 2013
Location: Ontario

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I'm told that the doctors want to use the fewest and most mild drugs when possible so as not to disturb the patient any more than necessary. When you get the chance, make sure you ask what you should be expecting and if another medicine might help.
Here, the doctors are using the top down method of drugs. Start with the heavy guns so that the patient has a minimal amount of damage done to their body. They want to avoid surgery and complications in the future.
Fatigue can be a big part of the disease. Five years on, I still struggle with it. I have good days and bad days. Try to get adequate rest and don't overdo things.
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07-28-2016, 10:08 PM   #6
eleanorab
 
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Join Date: Jul 2016
Hello!! I was diagnosed recently too (3 weeks)! I'm on pentasa, azathioprine and predisone which has helped with my Crohn's symptoms but I'm also extremely fatigued. Although my body is doing better, I know that it has a lot of healing to do (as well as getting used to the drugs). My IBD nurse told me to take it easy for the next few months while things stabilise. Be kind to yourself Emzy93
07-28-2016, 10:11 PM   #7
ronroush7
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Hello!! I was diagnosed recently too (3 weeks)! I'm on pentasa, azathioprine and predisone which has helped with my Crohn's symptoms but I'm also extremely fatigued. Although my body is doing better, I know that it has a lot of healing to do (as well as getting used to the drugs). My IBD nurse told me to take it easy for the next few months while things stabilise. Be kind to yourself Emzy93
Are you on iron or b12?

07-28-2016, 10:34 PM   #8
eleanorab
 
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Join Date: Jul 2016
Are you on iron or b12?
Not at the moment, I'm having weekly blood tests to check my levels and liver function so hopefully I will be advised if I need an extra boost
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