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Glad for Crohns diagnosis

Hi everyone! I'm a 37yo male and was just diagnosed with Crohns (had the colonoscopy etc). I've been healthy all my life and up until 3 months ago I was lifting weights, fencing, running, and had no complaints whatsover except for occasionally bouts with irritable bowel syndrom every few months.

But 3 months ago a lot of strange symptoms came all at once and got progressively worse. The back of my knees were sore and stiff, then my ankles, then my elbows, wrists, thumbs, etc. Arthritis everywhere- some days I would have to crawl up the stairs! At the same time I got a mysterious cough, and stomach aches every day. 3 months of diarhea and/or loose stools. I lost 25 pounds too.

I didn't want to go to the doctor because I didn't want to look like a hypochondriac and I figured he would tell me it was just stress and that I was wasting his time. But crawling up the stairs and having my wife threaten (semi-seriously?) to move out because of my terrible gas problems put me over the top.

I had a blood test done at the hospital and they quickly diagnosed crohns and put me on 50mg/day prednisone for 5 days then 40mg/day prednison which I'm on now. That was a week ago.

The VERY SAME DAY I started taking prednisone ALL of the arthiritis vanished as well as the constant farting. The cough disappeared the next day, and the stomach aches/cramps got better over the course of a few days. Had a colonoscopy and saw a specialist a few days ago and they confirmed the diagnoses of Crohns.

I am now 100% without any symptoms and feel great again for the first time in 3 months. So I can't tell you how glad I am for being diagnosed with Crohns disease. Putting a name to this nightmare is great because now I know where to look for treatment.

I'm a little worried about the prednisone side effects everyone talks about on these boards- hopefully they aren't as bad as they seem. Reading forums on the internet is usually dangerous because everyone reports their terrible side effects but not so many people take the time to write about their good experiences. Not looking forward to a moon face, mood swings or unusual fat deposits!

Anyway just wanted to say hello and introduce myself. Merry Christmas!
 

GoJohnnyGo

One Badass Dude
Hello Chuck,

Glad to hear you're doing much better. Having a positive outlook going forward from your diagnosis will be of great benefit to you. Sounds like you've have a healthy lifestyle as well, exercising on a regular basis. That too is going to help you feel better.

I've often wondered if there's a medical term for "fear of being labeled a hypochondriac." If not, then there should be. Many of us too, go through that feeling!

Have to admit I'm a little spooked about the prospect of taking prednisone. So it helps me to read about other's positive experiences with it.
 
Hey Chuck,

The prednisone can be really bad for some people and just fine for others. I was on 40 mg. for a week, and now I've tapered down to 20 mg., and I've gained about four pounds and dealt with some mild insomnia. However, overall, I'm feeling so much better. Don't worry too much about the side effects, just focus on getting better.
 
Hi,

Oh yes I forgot to mention the insomnia! I guess I do have one of the side effects :). I lay awake all night imagine what delicious breakfast feast I'm going to cook for myself. I even imagine myself buying the ingredients at the grocery store. So I'm completely obsessed with food now and can't sleep, but other than that I feel great :)

Thanks for the reply and the good wishes, hope everything stays good for you too!

lizzy_forrest said:
Hey Chuck,

The prednisone can be really bad for some people and just fine for others. I was on 40 mg. for a week, and now I've tapered down to 20 mg., and I've gained about four pounds and dealt with some mild insomnia. However, overall, I'm feeling so much better. Don't worry too much about the side effects, just focus on getting better.
 
Hi,

You haven't started prednisone yet? I don't like taking drugs myself, never have. But for me the symptoms were so bad and progressing so quickly I didn't have a choice. I'm glad I did, I want to send the prednisone makers a card for saving my christmas.

I don't know when I'm going to risk exercising again. I feel good now and I know the prednisone is turning down my immune system and inflammation response. So the idea of lifting weights and intentionally stressing my system right now doesn't sound right. I guess I'll wait until my gastroenterologist appointment in january and ask them what they think.

In the meantime I'll enjoy being a couch potato. Woops now I have a craving for potatos gotta run.

Thanks for the reply, nice to talk to other people with crohns!

GoJohnnyGo said:
Hello Chuck,

Glad to hear you're doing much better. Having a positive outlook going forward from your diagnosis will be of great benefit to you. Sounds like you've have a healthy lifestyle as well, exercising on a regular basis. That too is going to help you feel better.

I've often wondered if there's a medical term for "fear of being labeled a hypochondriac." If not, then there should be. Many of us too, go through that feeling!

Have to admit I'm a little spooked about the prospect of taking prednisone. So it helps me to read about other's positive experiences with it.
 

My Butt Hurts

Squeals-a-lot!
Hi Chuck - welcome to the forum! I'm glad that you are feeling symptom free so quickly. I have never had awful side effects any time that I have been on prednisone. Just extra energy. It does make me hungry, but I just have to use will power if I don't need to gain weight (which I usually DO need to gain). It's different for everyone so you will just have to wait and see.
I quickly got over not wanting to take pills when I discovered how much better they can make me feel. I never even used to take a TYlenol for anything - now I will take whatever will help.
I'm surprised that your doc doesn't have you on any other medication. You might need a mild maintenance drug like asacol pentasa or sulfasalazine (depending on the location of your Crohn's) to keep your symptoms at bay. When I was first diagnosed I took sulfasalazine and that kept me in a fairly good remission for 4 years.
Welcome again - and good luck!
 
I haven't even had a proper office appointment with my specialist yet, I met him briefly during the colonoscopy this past friday but my first real appointment isn't until january 15th. This started as a visit to the hospital emergency room last sunday where I was diagnosed with textbook symptoms and got the prednisone prescription, followed by an immediate colonoscopy appointment and specialist referral. My original prednisone prescription was for 50mg/day tapered down each week or so to nothing after about 6 total weeks, but the specialist told me to stay on 40mg/day indefinately, presumably until I have my appointment.

Sulfasalazine sounds great, I like the sound of a long remission! Also I don't like the idea of a drug weakening my immune/imflammatory system, I might need one of those if someone sneezes on me or I sprain my ankle or something.

I need to gain some of my lost 25 or so pounds because my pants just fall around my ankles now and my belts don't have enough holes. Maybe elastic waistbands are the answer? But I'm getting used to being skinny, apparently you live longer so why not..

Nice to meet you!

Chuck

My Butt Hurts said:
Hi Chuck - welcome to the forum! I'm glad that you are feeling symptom free so quickly. I have never had awful side effects any time that I have been on prednisone. Just extra energy. It does make me hungry, but I just have to use will power if I don't need to gain weight (which I usually DO need to gain). It's different for everyone so you will just have to wait and see.
I quickly got over not wanting to take pills when I discovered how much better they can make me feel. I never even used to take a TYlenol for anything - now I will take whatever will help.
I'm surprised that your doc doesn't have you on any other medication. You might need a mild maintenance drug like asacol pentasa or sulfasalazine (depending on the location of your Crohn's) to keep your symptoms at bay. When I was first diagnosed I took sulfasalazine and that kept me in a fairly good remission for 4 years.
Welcome again - and good luck!
 
Hi Chuck, and welcome to the forum.
Just for the record, I've been taking immuno-suppressants for 18 months now... and I get that paranoia about people coughing and sneezing around me. Rather strangely, I haven't been any worse (or better) than usual for coughs and colds! Everyone around me has gone off with colds, flu and "winter vomiting bugs"... and I'm still here! Still keeping my fingers crossed though!
 

soupdragon69

ele mental leprechaun
Hey Chuck,

Welcome to the forum!!

On the immunosuppressant aspect I decided to look at Crohns as my immune system over reacting and any meds we take bring things back more towards "normal" function or alignment... does that make sense??

Like Steve J I havent had any further colds etc despite being on remicade and methotrexate and pred which all immunosuppress... so perhaps something for you to ponder..

The main thing is to start learning to listen to your body and work with your medics to "fine tune" things now. As has already been said you may well end up on something to help reduce inflammation like sulfasalazine or mesalazine. Which med is given depends on where in your gut your crohns is active as they are designed to target specific areas. Try to look at things globally yourself and take into account the rest you need, to pace yourself, foods that may trigger etc.

Pred is global or systemic drug to reduce inflammation and yep you are now reading waffle from a fellow "pred head" who suffers insomnia and the munchies!! ;-)

Keep us posted on how you are and how your appointment goes. Looking forward to seeing you around more.

Welcome again!!
 
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Hello Chuck,

I was diagnosed with crohns back on 9/9/99. I too started straight off with only Prednisone and I too felt better immediately.

The Dr. was a busy GI and because all my tests were spread out it took him 3 months to figure out a diagnosis. It was a relief to know what I had so I could research. Sometimes the research is scarier than the disease. To me the meds scare me more than CD unless I flare and then I want Prednisone Now!

You will probably not be on Prednisone for too long. Once you meet your GI Dr. he will try to figure out other ways to keep you in remission. There are many sophisticated drugs. Their purpose is to tame your immune system.

I was hospitalized with a Severe Crohns Flare in Nov. I waited too long and was severely dehydrated, blood pressure 78/50 and I nearly passed. I spent a few days in ICU on a prednisone drip.

I am better now. I only take Prednisone and one Imuran tablet per day now. I start Remicade tranfusions next month.

I have been through this all before but in 2003 stopped taking meds, ditched all the Doctors and felt great. My flare in 2008 was unexpected. My GI Drs scolded me for not keeping up my meds for five years.

I felt fine. No cramps nothing so I just forgot about it.

I hope that your Dr. is kind and that you will be in remission for a long time.

Flare ups are no fun and if you have one go to ER right away. Do not Wait!
 
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