Wow, didn't expect so many responses! Way cool!
I need to be more honest though. I don't really post on forums so I was not sure how much information I should share, but everyone here seems very sincere and genuine, so I'm going to give you guys the true background info. I apologize for not being more forthcoming earlier. The following is very long, but it should give you an idea of what I'm dealing with.
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Almost 2 years ago I was diagnosed with a stricture in my pylorus, but I was scared to have surgery to correct it (making a connection from the stomach to the intestine) so I dealt with it. That included constant pain, bad gas, feeling bloated, etc.
Fastforward to a few weeks ago. I was all set to have surgery to fix the stricture on Nov. 9th. Fortunately I never made it. Oct 22 I started throwing up everything I ate or drank. I wasn't having any stomach pain, just couldn't keep stuff down. Went to the hospital on the 24th, still unable to keep anything down. Doctors said it was likely a stomach flu or virus, gave me some anti-nausea, sent me home.
5 days later, still couldn't keep stuff down. I'd manage to hold it in until night, but then it would all come out before I could get to bed. Went back to hospital on Oct.29, CT scan revealed intestinal blockage. The doctors made it clear that I would need surgery to fix the blockage, but they were not equipped for the procedure, so my primary worked to get me transferred to a different hospital.
I got there late at night, and a surgeon came to see me soon afterward. He said he'd have to operate right away, which I was fine with. I was already having surgery to fix my stricture, so if someone was going to cut me up, they better fix everything. It was the best decision I ever made!
The surgeon was experienced in this area and after fixing the intestinal blockage and establishing a path of travel from my stomach to intestine (to bypass the pylorus), he informed my waiting parents that I had Crohn's disease. Apparently he has done so many cases that he knew right away when he was looking at my intestines.
He didn't tell me though, and I didn't know until 4 days afterward, when the biopsy confirmed that I had Crohn's.
2 days after the surgery, I was started on medication but I didn't know what it was. I now know that I was being given 500mg of Pentasa every 6 hours, and 30mg of Prednisone every day. I was not getting any swelling, any acne, no moonface, nothing. At the time, I didn't think anything of the medication. I was just content that my stricture had been fixed, and that I now knew the cause of all my troubles.
I was discharged last Friday night, and early Sunday morning I was still WIDE AWAKE. That's when I started researching Crohn's more in depth, and got to a web site where people would talk about the medication they were taking. I read so many horror stories from Prednisone that I absolutely freaked out, went nuts, and decided to stop taking the Prednisone.
I'm still taking the Pentasa, because I read nothing bad about that. But all the stuff I read on Prednisone scared me. Plus, I read a lot that indicated that by restricting the diet, maintaining low residue/low fiber, and not eating the "forbidden" foods, Crohn's can be treated without medication.
The problem is that many Crohn's sufferers cannot fathom giving up dairy, fats, sugars, raw veggies/fruits (you can still steam them though), etc., whatever it is that causes a flare up for them. Hence it's much easier for a doctor to prescribe Prednisone than it is to convince the patient to stop eating certain foods altogether.
I didn't take Sunday's dose, so I was on 30mg a day for 1 week. Sunday night, I again got no sleep. Only 2 hours, damn insomnia effects of Prednisone. Monday I had some joint pain in my ankles, but the crazy withdrawals that I was expecting were absent.
Last night I got 9 hours of sleep, but woke up feeling quite fatigued. I took a 30min walk and the fatigue went away. Here I am now, sleepy, but I'm still feeling fine and not experiencing any horrible withdrawal, even though I read that not tapering can be seriously destructive to your body. The stories I've read of people trying to taper make me cringe, and here I am, 4 full days since the last dose I took, and I'm not feeling anything. I guess I should attribute that to the fact that I was on a smaller dose (I've read people starting at 100mg!!) for a short period of time.
Basically, I'm debating what to do with the Prednisone. I've been absolutely compliant diet wise; I eat 5-6 small meals, I don't touch dairy or raw veggies/fruits (except those allowed by the dietitian I spoke to in the hospital, green beans and pears and stuff), I don't eat red meat (didn't really eat much of it before), I don't touch whole wheat, etc.
I've done the diet to perfection, and haven't cheated or treated myself to anything. If eating in this fashion will allow me to escape Crohn's without medication (and it has thus far...no pain, no bloating, no cramps, smooth bowel movements), then I'm okay with doing this for the rest of my life.
2 years of suffering have made me realize that I should not treat food as a luxury but rather as fuel, and consume it only for the purpose of keeping me going. It's sad in a way, but to me it's better than taking a pill that has so many unruly side effects. Diabetes in 10-20% of patients? Bone deficiency? Weight gain, insomnia, mood swings?
The only reason I'm asking about the Prednisone is I'm wondering how much damage would be done if I take 10mg per day, or every other day, or every 2 days, or even once per week. If it can't hurt me the way I think it will, then I'm open to taking it. A lot of stories I read though, are of people who haven't had the surgery and don't want to get rid of their favorite foods, so for them the medication is necessary.
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Okay, that about sums it up. I'm pretty sure I'll get some heat for not following doctor orders, but I'd rather hear your true, uncensored point of view. In order to get that, I had to be completely honest, so thank you in advance for reading this and again, I apologize for not being completely truthful in my original post.
