Can you imagine ever taking steroids just for fun?
I sure can’t.
In fact, prednisone steroids are one of the pills I threw out of the medicine cabinent a few weeks ago, didn’t even want to look at the extra supply anymore.  There’s a few reasons for this.
If you are suffering from a nasty ulcerative colitis flare, there’s a pretty decent chance you will be handed a prescription for prednisone or another similar steroid to take orally or through an IV at the hospital. I personally never took steroids intravenously, but that is quite common for others. From my experience, it seems the over-riding goal of this medication is to control the inflammation the colon is going through. And you know what, tons of people have all kinds of success with it, and that’s great.
Back in the days in 2008 right after my diagnosis with UC, I was quickly put on prednisone at 30mg/day. As things continued to deteriorate, that dosage went up to 60mg/day. I was about 150 lbs at this time and getting lighter by the day. And yes, I was up all night from the steroids. Insomnia, one of the top 3 sleeping disorders is a common side effect of prednisone I demonstrated nicely. We were living in this real dumpy apartment at the time, and thankfully my wife is a heavy sleeper. Since it was just a studio apartment, there was no separating the bed from everything else, and she never seemed to wake up luckily.
Back in the end of ’08 to early ’09 I was a total mess.  Ulcerative colitus was beating me up pretty bad, surgery was a thought that was not just an idea anymore, and my brain was getting to the point of not really caring what happened. My wife was coming home from school and instead of asking “How was your day” asking “What is the new medication you were prescribed today?” We even had a chalkboard in the apartment with an ever changing list of what medications to take/dosages/enemas/when etc… It felt like a mini pharmacy at times.
So back to the prednisone and steroids. There came a time in early 2009 when I was a complete mess, ten plus bloody bowel movements daily and “heeps”(snagging that from the British English) of steroids along with the Sulfasalazine. In the middle of this and out of nowhere there was this crazy game going on right on my back. Something like “Can we get 5,000 dots on Adam’s back in just under 3 days?”. The answer was yes. It looked horrible, but luckily, I didn’t have to look at it. It was the type of thing that had it been the middle of the summer, I would have hid from everyone on a public beach. If it was 150 degrees outside, I’d still be wearing a shirt to cover that stuff up.
So, along with the weekly gastroenterologist meetings at the local medical center, I made a side visit to the dermatologist.  With so much going on with my UC, whatever this red small tiny spots all over my back were didn’t really freak me out too much. Yes it was nasty to look at, but there was no pain, cramping, or blood involved. So doctor what the heck is this crap?
“You got steroid acne” son. Classic case indeed he said. It was so impressive, he even went to get a “fellow” from the local university who followed him around during his office visits to bring in and show. I was put on display. This made me feel real special, thanks steroid acne!
So, nothing special, nothing fatal, he told me that once I was off the steroids, the thousands of red dots would just go away on their own. And, you know what, about 2-3 weeks after getting down to a low dose of the prednisone, he was right, the spots went away on their own.
So what’s the point here, it’s simple, the medications that we are given to deal with the UC disease are not perfect by any means. Many of them have side effects, both large and small. If you develop all types of acne after taking prednisone, ding ding ding, I’m just like you.
One thing to keep in perspective when fighting UC, especially when you are in the trenches and going head to head with horrible symptoms is to not sweat the small stuff. What’s small stuff? That’s up to you to decide. For me, it was 5,000 red acne dots on my back.
I started site  shortly after being diagnosed in October of 2008 with severe pancolitis (when my whole colon was inflamed).
For me, it was a very rough start with severe symptoms. Getting bounced from medication to medication was not easy or too helpful. But, I did meet another UC’er, changes several parts of my diet, and of course the rest is history.
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When I was put on steroids intravenously in hospital the only thing I noticed was the lack of sleep I was getting. It wasn’t until I was put on them orally 50mgs where i started to notice that my weight gained by a total of 3 stone, my face became ridiculously round and swelled, I got large purple stretch marks on my stomach along with a ridiculously round and swelled stomach, I developed acne on my face and chest along with acne on my back like yourself…what I liked to call backne and the worst of them all a temper that would of made the Incredible Hulk look like a kitten. Needless to say i HATE steroids. They only worked on occasion when I was getting them by IV. But I have been off them since August ’08 and I plan on keeping it that way. Like yourself any remaining tablets I had I threw out without caring. Thanks to them I still have the scarring stretch marks and the weight gain. Luckily the swelling, temper, acne and backne are gone and good riddance! :D
They should call all acne backne from now on, can we vote on this? It just sounds cooler right?
one of the extraintestinal symptoms with UC is pyoderma… which mimics acne, but can get really, really large and disturbing. google “pyoderma” and you’ll see what i mean. I have mild pyoderma, never getting bigger than the size of a pencil eraser – thank god – but there’s a prescription steroid/cortisone cream called triamcinolone acetonide and it clears those little guys up overnight.
Good to know, thanks again Ash, I still think you are actually a GI doctor, actually now a GI/Dermatologist doctor.
I just checked and found a Clobetasol Propionate creame, and a Clindamycin Phosphate Gel USP 1%, so you’re probably right on with what I got, strange how the docs out here in Cali never mentioned that. Thanks again, good to hear from you, was worried you got carried away in some St. Patricks day stuff the past few days.
I am on Prednisone at the present time and only on a low dose of 20mg a day. I have lowered it on my own to only 10mg a day as I am going into remission finally. I have started to get the moon face and my clothes are starting to get too tight that it is depressing the hell out of me. So I lowered my dose and plan to tell my doc that I’m going off it. He started me on Azathioprine, but I’m hoping I won’t have to stay on it. In order to stay in remission I will have to stay on Asacol (melsamine tablets) but luckily they have no side effect on me. I have to say that steriods are horrible and I hate them too!
Hey Melanie,
That’s way too bad that you got the moon face, it seems to be really common with steroid takers. Hey if you don’t mind me asking, how long did it take for the moon face to come on, or how long were you taking the steroids?
Gosh, I thought I was the only one that got those horrid bumps. Only even after I stopped the steroid, I still kept on getting the bumps. They were only on my uper arms and behind my arm pits, Then began showing on my chest here and ther and my thighs. I read about using some essential oils as home remedies for differant ailments and found that Patchouli or Spikenard was good for differant types of skin issues. Soooo, I tried a patchouli and a blend on my arms and thighs etc. and it helped a great deal. The bumps have been gone for a while now. so I laid back on the patchouli and after about a week they started coming back. So I started using it again and within a couple days they had started going away againand no more were coming up.. Isn’t it amazing how the good natural things that have been on this Earth forever really do have a purpose.
Charleen,
Unbelievable!! That’s amazing, i’d never heard of patchouli working such wonders for stuff like that. You better believe I’m going to be spraying that stuff all around myself the next time I walk into the dermatologists office. Thanks for posting this. I’ve pretty much got my stuff under control, minus some psoriasis on my feet and a tiny bit still on one of my hands, did you ever get any of that stuff too? Or any joint pain? The joint pains was pretty horrible to deal with. But again, once I got on a good diet, that pretty much went away too.
I recently had a bad flair up of ulcerated colitis and the hospital have put me on Prednisone and Azathioprine (im already on Pentasa so I feel like a walking pharmacy). The Prednisone took a good week to work and now my colitis is under control and feeling much better however im having to deal with the side effects of the steroids :( Im getting hot flushes daily, im not sleeping good, headaches, constantly feeling hungry (although im trying to keep a control of this), puffy face and neck, tummy and back bloating, feeling spaced out, backache and now today I noticed a few red flat spots on my legs (can it get any worse I feel like Mr Stay Puff Man combined with Mr Blobby). I did get bad indigestion at first but they has subsided.
Im worried about the spots, will they go?, my legs are my best feature and id be horrified if they stay, they look like little bloody spots.
Hey Jenny,
I’m feeling for you right now. That prednisone can be nasty with the side effects for surezy!
But, from my personal experience, once I got off it compeltely, which did take me a very long time, because I tapered off of it for so very long, the side effects went away as well. Tapering off of prednisone is an art as much as anything else, so be sure to talk with your doctors about that BIGTIME, its not something you want to be doing a guessinggame with. I think that on the bright side if you will, it sounds like you are a perfectly normal human being, and UC person too, and dealing with much of the side effects that most of us go through especially in terms of the steroid side effects. I think you could count over 1000 small tiny red dots on my back at some point. Yeah, it was pretty nasty. but, like the sleeping problems, it did go away.
Best of luck, and thanks for sharing how things are going. if you want to write your story, you can do so HERE and we can put it up for others to check out and learn from.
BEST OF LUCK,
Adam
I bought the Shielo Complexion Scrub item a few weeks ago. I think its fantastic. My face feels clean and and smooth and it doesn’t dry my skin out. I bought it with the jojoba microspheres in it and with the complexion moisturizer, they make a great combo … i will defenately keep buying this Shielo stuff.
Guys i have also been diagonsed from UC and i am on 5 mg steroid now. I have real bad face acne. I try my best to prevent it by having tons of water,face washing many times, major fruit diet,no oily foods, but still my acne doesnt go away.