Crohn's Disease Forum » Your Story » Newly Diagnosed with Crohn's

04-13-2014, 01:10 AM   #1
Join Date: Apr 2014
Location: Niwot, Colorado
Newly Diagnosed with Crohn's


I just got diagnosed with Crohn's on Thursday after my first colonoscopy. And to be honest it was a relief initially. I had made an ER visit in the middle of February for horrible abdominal pain and was administered a CT scan which found inflammation of my colon and the beginning of my small intestine. The ER doctor thought initially I had Crohn's but at the time I had no diarrhea with my other symptoms so when he talked to the GI doctor she said there was no way it was Crohn's. After my visit I was put on antibiotics which did not seem to help and that night I started to get diarrhea. I thought maybe the diarrhea was just from my antibiotics so I didn't think much of it. After my 7 days on my antibiotics I was still in a lot of pain and going to the bathroom 3-5 times a day which was miserable. I started to also feel very fatigued most days. This is when I decided to actually call the GI doctor I was referred too. I couldn't get in for a month and it seemed to be the longest month ever. I had no idea what was wrong with me and had no one to talk to and felt little support from my husband at times. I met with the GI doctor and he immediately said I would need a colonoscopy. He said he felt as though it was one of two things Crohn's or IBS. I had my colonoscopy a week later and was diagnosed. Which brings me to today. I'm 3 days into my medicinal regimen, I'm on 500mg of Pentasa 4 times a day and 40 mg of Prednisone which will taper 5mg every 10 days. I feel better already, I'm not going to the bathroom as much although it still seems loose and my pain seems to have subsided quite a bit.

I feel fairly lucky that I seemingly got a quick diagnosis and didn't have to wait around in pain. I'm a little worried about being on all this medication. I have never liked taking medicine. The Prednisone I will only be on for a short time but my doc said I'd be on the Pentasa indefinitely. Like I said initially I was relieved because I wanted to feel better and not be so tired all the time. After I got home from the colonoscopy other emotions started to come over me. I felt as thought I was to young to be diagnosed with a life long disease (I'm only 27) and I was scared to be on so much medicine. Right now I'm just trying to live day to day, feeling better is helping. I'm glad there is forums out there for support and other people that understand what it's like and how real the physical pain is (it's not just a stomach ache).

Do a lot of people do gluten free diets to help with symptoms? Any pointers on diet would be helpful as I hear it can help keep you in remission longer.

04-13-2014, 10:10 AM   #2
Join Date: Mar 2014
Location: Springfield, Oregon

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Some people seem to be helped by avoiding gluten, but it is not something that has ever been studied seriously to my knowledge so a gluten free diet is not a substitute for treatment. Be careful about your emotions, for some Prednisone will cause serious emotional side effects, so it could be the pills talking as much as your own inner voice. The forum wiki has an article on common problem foods for people with Crohn's Disease. It's not a complete list and everyone's triggers are different but I would call it an excellent place to start. Keep a food diary and see what sets off your symptoms if you can.

Think of the drugs like this: if you don't take them the inflammation will slowly and quietly ravage your intestines until you have a blockage or a fistula so bad the surgeon is asking you if you want to take home your terminal ileum home in embalming fluid, you know, to show to your friends! Or worse, you could get colorectal cancer. It's all in the name of preventing agony in long term.
05-05-2014, 11:31 AM   #3
Jessi's Avatar
Join Date: Jul 2011
Location: Ogden, Utah

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Hi rogi, and welcome to the forum.

I am so sorry about your diagnosis. There are a lot of people that control their IBD with diet rather than medications. You can read more about it in here or here.

I hope you feel at home in this forum and are able to find the answers you're looking for.

Dx'd with Psoriasis in 1993
Dx'd with Psoriatic Arthritis in 2004
Dx'd with Ulcerative Colitis on May 18, 2011

"Life isn't about waiting for the storm to pass... It's about learning to dance in the rain." ~Anon.
05-07-2014, 09:28 AM   #4
Indiana_Peach's Avatar
Join Date: May 2014
Location: Atlanta, Georgia
Welcome! I was diagnosed with Crohn's back in November. Thank God for your early diagnosis. I have been hospitalized twice since my diagnosis. Most recent, last week in which I was given Predisone. I had to discontinue taking it due to side effects.
05-07-2014, 10:09 AM   #5
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DJW's Avatar
Join Date: Jul 2013
Location: Ontario

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Hi rogi. It's a lot to take in. Take it one day at a time. Know you can have an active life with crohns. Sending you my support and best wishes.
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DX 1978 (12 yrs old)
Ileostomy at 19

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05-08-2014, 11:38 AM   #6
Senior Member
Hi Rogi

I am on Pentsa and have no side effects, together with Aziathropine it has kept the disease mainly in check. I know how scary the diagnosis is. Some people have very few flares, so keep that in mind. Medication is essential to keep the crohns at bay. When I was first diagnosed there were very few medications with the exception of steroids. Steroids help in short doses, but not good in the long term. I hope that you get the disease under control quickly and are one of those who have long periods of remission.

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