JonDuke, sorry to hear about your diagnosis...interesting that I was considering starting a thread like this as well. I'll tell you a bit about my story...
I was having very mild/dull issues with stomach pains over the course of 2013, no affect to my bowel habits but it did affect my appetite and I'd have minor stomach issues. So minor that I thought nothing of it, but they increased in frequency so I thought I'd get it checked out.
Started getting a battery of tests in August, September and October...a CT Scan showed inflammation in an area of my colon...got an emergency colonoscopy and they couldn't get the camera through one of the areas because of a severe stricture.
They made an unofficial diagnosis at the time of Crohn's and scheduled me to see a surgeon about the stricture. In the mean time at the end of November I got put on a tapering dose of Prednisone, started on 40mg and JUST finished my dosage this week.
In terms of side-effects the weight gain comes from eating, it will make you insanely hungry...thankfully I am a pretty active guy and watch what I eat even with that insatiable appetite, I gained NO weight whatsoever but I can see why people do the appetite thing is crazy.
As for balloon-face I noticed that my face did get more round and it's starting to ease up a bit now that I've come to the end of my dosage but even then I've been told it may take a month or two after until my face looks 100% back to normal...but I'm a really skinny guy (140lbs 6'0) so it wasn't as big of a deal for me with my balloon face.
In terms of surgery, I got scheduled for surgery Christmas Eve for bowel resection and I'm in recovery now...they had to take out the diseased area, including the stricture which went successfully. The surgery wasn't AS bas I thought it would be...spent only 3 days in hospital, thankfully got out the day before my birthday.
I'm insanely tired all the time now which I hear is normal for up to 3-6 months post-surgery (which they have now been able to officially diagnose me as having Crohn's)...I'm not able to work out yet but I'm back to normal activities other than exercise, back to work next week as well.
I get another colonoscopy done in March to see what my colon looks like post-surgery and if any inflammation exists/how much has come back since I'm off the prednisone. At that point they said they'll likely want to start me off on Humira and/or potentially Remicade depending on how Humira works.
Humira I'm told is for more mild cases and can manage well (and doesn'te require you to go for infusions every 6-8 weeks, you can take a self-syringe which seems easy enough).
If you have any other questions let me know...so far I've been able to take most of this in stride, but I can imagine how you must be feeling. It's never easy to hear these things and especially with your brother's severe case yes it can be scary, but you're not alone brother and like others have echoed they really have come far in recent years and life can be managed with this disease!
Keep me up to date with how things are going, I'm always wanting to hear about others experiences and what is and what isn't working for them.
Honestly my pain has been so manageable I think that's because of how physically active I have been, I'm a vegetarian so I'm not sure from a diet persepctive what causes more issues than not because for the most part my Crohn's symptoms to date have been mild...so take that for what it's worth too.
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