On Prednisone and coming off...Do I need help?

I am brand new and this is odd for me. Diagnosed with CD in 2010 but doc said I probably had it 10-15 years prior to that. This is the first time I have had big problems, mostly bloating, I'm 105 lbs, which is heavy for me, at 5' 6", but my stomach has been bloated for a long time. By the end of the day I look like I did 6-7 mo. pregnant. My doc said prednisone, so I said yeah! Then I started to about lose my mind after a few days and said I gotta get off this. I was only on it three weeks and have been dosing down for 3 weeks with about 3 more to go. Full of snot and feel like I have bronchitis, but mostly I am afraid of how I am feeling, with the mood swings, depression, can't stop crying, was in ER this week for a migraine that scared me so bad I couldn't lay down, my BP was like 50 points higher than ever that's probably why. Single mom and I am almost afraid to be with my son. I want to just get off this now, I am not normal psychologically to begin with but this is over the top! I am neglecting/forgetting things, heart racing, afraid, and I am prescribed 6 mg klonopin daily already! What is going on and should I ask for help with my son? This is a nightmare and I still look pregnant. Totally losing it....please anyone have anything for the bloating issue or this crazy mental stuff??

Thanks, your response and all I have read make me feel better about the hard time sleeping and mental stuff. But I went on it for bloating and now it is causing bloating?!! What? I'm confused about that. As far as the klonopin, I already take so much that my family doc said it's illegal at my weight to go any higher, that's why I can't believe I can still feel this way when I am on that much. Severe anxiety probs and years on it though so maybe I'm immune. But no upping it doc says he'll lose his license.

I'm sorry, that all sounds so hard. I hate prednisone - awful insomnia, horrific weight gain, leg cramps, and mood cravings that are worse than pregnancy. It will help with the bloating long-term; the bloating causes are different, so it'll help get rid of the Crohn's cause and once you're off pred the bloating from that will go away as well. Tapering off is VERY important. You can't just quit cold turkey. How high is your dose? The good news is that once you start tapering the symptoms will begin to lessen and will go away completely once you're done (not necessarily right away, but they should).

Oh, no I didn't mean I'm heavy, I like that I have gotten that high in weight, I usually hover around 90, this weight gain would be a great thing....except that I am a total stick everywhere with a bloated stomach....it would be very cute if I was pregnant but I'm not....this is what I've been complaining of to my GI doc since Dec....bloating and very difficult to go to bathroom. He did a CAT scan and said it was normal, then threw the prednisone to me like it was nothing, so I thought great! But I don't believe it was the best move on his part. No I don't want anyone to think I'm anorexic, it's just hard to be a 00 and try to cover up a big hard stomach when summer's coming and I have a job to go to. So yes, I think I am in an active stage of Crohn's for the first time, but usually hear about diarreah, so I don't know?? I have the opposite symptoms, all doc says is take mirilax every day, it won't hurt you, but it feels very unnatural and I never feel "done".....make sense to anyone out there?? My family doc is very cautious and he's the one I trusted to go to for the dosing down, he said go 2.5 mg lower every week, so it's very slow and no no no no I am not anorexic that was misunderstood.

Yep, I do. That's a huge cut overnight.

With Prednisone, it depends on how long you are taking it. With a fast taper, you can go down quickly. My daughter just recently had bad asthma with a bronchial infection. They had her take 40 mg for one day, and then cut to 20 mg for the next three days and then stop altogether. She did great...it got the inflammation down, her asthma settled down and I don't think it was a long enough time on Pred to affect her adrenal glands.
For my Crohn's, I'm just doing an 8 day taper, starting at 40 mg and decreasing by 5mg each day. If the pill cam results look bad, then I may need a longer course, but we are seeing if a short burst of Prednisone will help settle things down.
I agree with NCOT that you need a proper diagnosis, and a doctor who is communicating better and working with you.
BTW, I have Crohn's in my terminal ileum and not in my colon, where I believe I have IBS with slow transit time. When I'm in a bad flare, I do get D at times, but I am predominantly chronically constipated and I'm always messing around with fiber pills, probiotics, colace and Miralax. Bloating may be from bacterial overgrowth in your small intestine, called SIBO. There is a breath test I think you can take for that, or they can try a course of antibiotics like Cipro which can help.
Even when I'm constipated I'm rarely that bloated....but I'm not skinny like you so maybe I can't tell:) I hope you feel better soon!

Thanks all for so much info...NiceCupOfTea and others, I may have neglected to say, I have had a colonoscopy to have a definite diagnosis of Crohn's. I want to say it was three years ago, not positive though, maybe four. Happened on accident, had a bad case of the flu, was hospitalized for dehydration and they saw something. So I did some testing, then a colonoscopy, and was told I had probably had it for 10-15 years prior, by the amount of scar tissue seen, in small intestine and large, although he was the first to admit that was an educated guess. This doctor knew what he was doing, he was great, but then moved to the "big city" and I was left with his replacement. The recent CAT scan was reluctantly given because I told him (new doc) I have been bloated and constipated for so long. So when it came back just fine, he handed me some prednisone. I am 35 and people say that as you age you get the belly fat going, but it can't possibly happen that quickly and with pain, that's just common sense. I am probably going to re-read or print some comments from you guys, and push him for another solution. Pentasa and laxatives just aren't doing it. And his ignorance about a med like prednisone leads me to believe I'd rather drive a ways than see someone sub-par. Of course, as soon as the panic and heart palpitations subside, I can't even imagine driving on a freeway or in a city right now...oh wow LOL...guess we can only do what we can and say no to things. Wish I could say no to work for a little while, but I've already had one LOA this year, we are allowed 2, the gov't says I can't get FMLA for CD flares because I haven't worked enough hours, so I would have to go back in time and work more for my company to be allowed to give it to me, even though they would love to...doesn't make much sense to me, that's a topic for another forum...thank you all so much!! I know now that I am not alone or abnormal or crazy...well maybe a little, but that's a good thing! Exhausted and believing God will allow me to sleep and double it, NO triple it to my mind and body!! Bless you all...

Thanks so much for clarifying about needing another colonoscopy....not that I want another, but it is worth asking about if it would help. I just found out this weekend from someone at a family graduation party that the doc I used to see left the office because he refused to work with the one I am seeing now when he was placed there. A couple distant relatives I don't even know have the doc who did my original diagnosis. They both said they'd follow him anywhere he went. One drives from states away to see him, the other said she'd do the same. Their relative said that who I am seeing now is no good, the other one is known to be great all over. If he won't work with the doc I'm seeing now, I am definitely going to see if he still takes my insurance. If not, I will have to look around or do some real arm-twisting with my current "not so special-ist"....I am feeling better overall as the pred is cutting down now to almost none. But still exhausted, having a lot of headaches and migraines, and still feeling bloated and full. And is feeling absolutely exhausted after eating normal? I am hating to eat because I just get so tired afterwards, and I mean a small meal, not like I stuffed myself. I have been this way for almost forever, is it a crohn's thing or is it just me?? And also so tired in general, my crohn's doc said my vitamin levels are fine and ask my family doc if he thinks I need Vit D, family doc also said all blood tests were normal, why am I so exhausted? Even if I only go out for a few hours a day....SO tired of being tired!!

NiceCupOfTea you are so great! Thanks so much for all the responses...I'm going to stereotype you now and assume you are British since you said you're not from the U.S. and because of your username....because everyone knows that only people in your country like a cup of tea....LOL. Well, I may have had this disease for a LOT longer than I have known, according to the "good" specialist, who did the original colonoscopy, so the fatigue may be typical? Everyone seems to say, get up and keep moving, shake it off, and I'm like really, when my body is shutting down telling me to sleep I probably should listen. But that is assumed to be laziness by many. As far as trying to find my old doc I will be on it tomorrow. Oh also about work, I meant that my company knows I have Crohn's and wants to give me an FMLA leave (Family Medical Leave Act). This would mean I would bring documentation to work and be able to take a "crohn's" day here and there on my word without collecting attendance points. I get points for being late or missing work, which at best can cause me to not get a raise, at worst can get me fired. But the company's hands are tied, because the leave act is regulated by the government. The gov't says I haven't worked enough hours per year to qualify. So as much as everyone at my job knows me, it makes no difference, I have worked like 900 hours less a year than I had to to qualify. So I would have to add hours while I am sick. Seems as though those of us who are working part-time trying our best, the gov't would rather have on disability or something. I would go nuts if I couldn't work. But the possibility of losing my job is real, if I were to accrue too many points for sick or late. I don't understand the system sometimes. But this is the USA, enough bashing of my country, we get it from all over the world, and it really is great to be free. Thankful for all those who we remember this weekend.