Taking steroids for ulcerative colitis is very common. Most of the other UC patients that I have met have been treating their ulcerative colitis with prednisone at some point in time. It turns out that prednisone is one of the older drugs that exists for treatment of UC symptoms.
Like any medication for any disease, the big question most people have is what can be expected after you begin taking the medicine? It’s a great question, and one that usually has a unique answer for everyone. I think that if we gathered 100 UC people, we might get close to 100 different answers to the question on how did prednisone treatment go. But this is nothing to be alarmed about. Medications just have an interesting way of affecting people in different ways.
Some frequently asked questions about prednisone and as you can see they are often about the side effects:
How do you get rid of facial hair from prednisone? The majority of people get rid of facial hair when you are finished with tapering off prednisone. Although facial hair growing especially on women can be very annoying, it does go away when the prednisone is over.
Does prednisone cause problems with your teeth and make them decay? For some people, prednisone can cause severe tooth sensitivity. This is likely due to the prednisone eating away at the calcium in the teeth and bones. Definitely talk to your doctor about what you can do to reduce the tooth discomfort that it can cause to some people. Some doctors recommend a calcium supplement while taking steroids/prednisone.
How fast does prednisone work for ulcerative colitis? For each person this answer is different. Much depends on how severe the flare up was before taking steroids, but also the amount of prednisone in the dose also can make a big difference. Some patients report that their UC symptoms have gotten better within as little as one day after starting a course of corticosteroids. For other people it may take several days for the medication to take effect and reduce symptoms.
Is Uceris better than prednisone? One of the main reasons people consider uceris vs prednisone is due to the reported lower side effect profile of uceris. Some people have reported better results with uceris, others with prednisone. It really is a case by case situation.
Does prednisone make you poop? Not usually. It is not something that is recommended to get rid of constipation.
Will you get moon face from prednisone? Not everybody who is taking prednisone will end up with moon face. There are some interesting details on personal experiences with moon face in the prednisone survey here.
How do you taper off it? Talk with your doctor about the best taper schedule for you if you are taking prednisone. It is unique for everyone but it is absolutely essential to taper on a timeline that your doctor has prescribed. You can become very sick and vulnerable if you taper off incorrectly.
Does steroid prednisone make you moody? Some people will notice(or more likely, their friends and family will notice) that a persons mood and temper can change when taking a moderate or high dose of steroids. Although it can be awful, it is not uncommon so don’t be totally alarmed if you start acting a bit off from your daily normalness. Maybe it would be best if you told your close acquaintances that you are potentially going to be acting like a different person so they are warned.
From my personal experiences, I can remember the first day I took prednisone for my colitis. It was right after I had my colonoscopy and was diagnosed with the disease. We went to the pharmacy and picked up the steroid pills, and I immediately popped two 10mg pills in my mouth. The taste was definitely not very pleasant. Prednisone is one of those pills that you want to swallow quickly and not leave in your mouth for long because it tastes nasty. But anyways, I can remember how within about an hour, all of a sudden I had an incredible amount of energy, and I told my wife I thought I was cured from the disease. It’s true, the prednisone gave me a huge burst of energy and my pains in my abdomen seemed to go away instantly. This was strange, especially since I had been dealing with 10 plus bloody bowel movements per day for quite a while, but at the same time it seemed like a miracle was happening.
Well, after a few more hours, it turned out I was just on a quick and temporary “steroid high”. So, no, my disease did not miraculous go away that time. The steroids did give me more energy to some degree. They also raised my appetite a little bit, which was good as I was loosing quite a bit of weight with the active colitis I was dealing with. As for an interesting side effect from the prednisone, I was one of those cases who had a hard time sleeping at night while on a high dose of the medication. And by high dose I mean 30mg and more. At my peak, I was up to 60mg/day of prednisone. I think the difficulty sleeping was the worst thing that happend to me from the medication. Other people I have talked with have reported a side effect known as “moon face” where your face gets all puffed out from the steroids. I know this sounds horrible, and I am sure it is hard to cope with along with UC, but everyone has also reported that the moon face goes away once you end the use of the steroids, which is at least good to know if that happens to you.
Of course, I think the biggest question everyone has is when do you see results with the steroids? That’s a tough question to answer. Some people who have taken steroids for UC with very mild symptoms have said they noticed their inflammation going down within one to two weeks. Other people have had different cases where they started with more severe colitis, and the drugs worked, but over a longer period of time. It really just depends on each persons case. The good news is, steroids do definitely work for some people, and that is why doctors prescribe them.
Be sure to ask your doctor about potential side effects from the medications like insomnia, and weight gain, moon face, and anything else. This way, if you do experience some side effects, you won’t be as alarmed.
One side note, I definitely remember several doctors saying that the tiny red dots that once appeared all over my back, literally thousands of them was called steroid acne, Jen calls it backne. And they attributed it all to the steroids I was taking at the time. And yes, it all went away once I discontinued the drugs.
So go read through the comments below and when you are ready you can read the prednisone reviews submitted on this page.
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.
Leave a comment, ask a question, take advantage of our past experiences here, use the search boxes, they are your friends to0:)
I’ve written 2 different ulcerative colitis ebooks, you can check them out here.
And, the Free eNewsletter, which has important updates can be joined here.
I was on 60mg of prednisone for a while too. Definitely remember the energy, the insomnia, and the increased appetite. I didn’t get the moon face too bad, but my ankles and feet swelled up really big, to the point where I had to wear slippers in public because my shoes didn’t fit! Also my face would get flushed right after taking it and then gradually cool down.
Man I hate steroids with a passion!!! I have all the symptoms! My moonface is just horrible, my mini beard is hidious! my appetite luckily is decreasing by the amount im on (ive gone from 60 down to 25 now wohoo)also so is the insomnia! finally sleeping fully for the night. The highs are also starting to become less and less and the tempers are becoming more and more. I not only have bacne but my chest is covered is horrible spots too. I also look like im sic months pregnant and mt feet are swelled too…have i forgotten anything? oh yeah handfuls of my hair are coming out…but that could be from the imuran also! oh yeah and the sweats…i have been constantly sweating since ive been put back on them………….and whats funny is they didnt even work this time not one bit! so one good thing is no more steroids for me after i get off them! couldnt be frickin happier!
I was on 120 mg. solumedrol in the hospital for 3 days, then tapered to 60 mg prednisone for 4 days, 50 mg for 4 days, 40, etc. I am on the my 3rd day at the 30 mg. and I am SO sick of the depression that goes along with this drug. Not to mention I think it’s eaitng a hole in my stomach because I feel like puking all the time! My side effects are way different than most. I do have insomnia (thank goodness for ambien), and mood swings. but I have no energy, no zest for life, all my senses are dull. I have NO appetite and force myself to eat. I don’t have swelling or moon face. I have been on this drug before but this time, the side effects are worse. I know my hair will fall out too. All I can do is pray that as I keep tapering, my flare won’t come back. It makes me so sad to hear how many of us are suffering from this disgusting disease.
Pred makes me very irritable and snappish, I have difficulty focusing, and I can’t wait to taper even though I am still bleeding. It affects my sleep patterns (wake up very early) and gives me false energy. I think I am also depressed too because I lose interest in things I like and just want to watch TV.
Let’s all heal and laugh about it some day!
Have just finished a course of prenisone. After the first week I began to feel very much healthier and my sex drive returned after being much lower than before I was diagnosed with Ulcerative Colitis. My symptoms seem to have subsided dramatically and I am hoping that the drug has brought things under control. I am very concerned however that my previous problems will return now that I have stopped taking the drug, but in the meantime my wife is much happier, nudge, nudge!
I have just returned from a visit at the hospital with a prescription for steroids. I am massively on the fence over this decision. I’m so sick of spending my life in the bathroom, or working out where the nearest one is but so scared to actually bite the bullet and get on with taking them.
Are the side effects bearable? I have a trip coming up in a few days which requires a 3 hour drive to get there and I’m worried these steroids are going to make me go crazy. Oh and fat, which I don’t want. On the other hand I’ve been in a bad flare for a while now and a part of me is willing to give anything ago to get my old life back, even if it’s just a half version of my old life because the one where UC dominates all my decisions ain’t so fun!
I guess the point of my post is just a little reassurance whether to just man up and take these pills, but also should I start straight away or wait until after my trip? Don’t want to be a crazy person on the motorway for three hours now do I?!
Hi
I used to take 60 mg of predmisone as well but now thank g-d im tapering it a gram a week and i am at 8mg. Ive discovered that I have white stripes on my fingernails and was wondering if anyone else was experiencing this as a result of prednisone. Thanks
I have been on 40mg a day for about 6 weeks now with a follow-up with my GI on a few days to decide what to do from there, and I have to say I couldn’t be happier on Prednisone. Before starting it I was crapping my pants in public (with Depends on, but STILL) at least once a day because I could never make it to a toilet, or I would just avoid going out in public altogether because of how much pain and embarassment I was in. This was doubly stressful because I’m in the Navy and can’t just not get up for work, haha. Anyway, my health and quality of life was in the dumps (see what I did there?) and as wary as I was about the side effects of this drug I was more afraid of where UC was taking me. 6 weeks later and I can say happily that I’m SO glad my GI prescribed it. I do have a puffy face and my appetite came back with a vengeance that I am now working off at the gym every other day, but did you just read that? I can go to the gym! I went from about 15 painful, bloody BMs a day to 2 or 3 :) Other side effects I’ve experienced are that the hair on my legs stopped growing, impatience/irritability a few hours after I pop a pill, some acne on my face, and night sweats but only when I eat too much too close to going to bed. Honestly, it might sound like a lot of “bad” but it has done me more good than anything…I am starting to feel like my old self I lost over a year ago since this flare began. So, don’t be afraid of the evil little pill, haha! Just be informed of what may happen, work with your GI to make sure you’re not getting an excess dose (which can lead to some side effects), and take it one day at a time. It took me about 2 weeks to see results that stayed. I wish everyone luck with whatever medicine they’re on, and here’s to healing and managing UC withOUT drugs if you can :)
I had similar results to you but now the pred is done and my symptoms are coming back. I’m so afraid of what is going to happen now. I am getting married in a couple of weeks and have a honeymoon planned for September on Vancouver island and I live in Ontario. So airport? how is this going to work.
I am having flare after being in remission for about 3 years. My dr put me on 40mg of prednisone and after 7 days i have seen no change. how long does it generally take to see some sort of improvement? I have no swelling or moon face. I do have the insomnia and increased energy which i don’t mind. I do miss eating. My dr told me to stick back to a bland diet and i am losing weight too fast because of it.
After reading this i am now concerned about depression/anxiety. i am on cymbalta to control anxiety and have xanax on hand for panic hands. So far so good. but i have two toddlers and honestly i don’t have time to be sick or going thru more issues.
Any help will be great.
So how long after starting the prednisone treatment does it take to have normal bowel movements? No one ever said that. with the loose bowels, who give a rip about sex drive, i mean, ohh baby you da man, oops!
Hey Tim,
It totally depends on the person, the severity of the active colitis and the dosage. I don’t think any doc or patient who has experience with UC and prednisone could give you a hard answer and be able to stick to it regarding the “when” does the poop get normal question. it’s just one of the infinite possibility type of questions/answers that are common with treating UC. I wish you the best, and on a side note, if you are not seeing any improvement at all with prednisone, definitely talk to your doctor and let him/her know, its not the type of med you want to be taking in high (or lose doses in my opinion) for any longer than necessary. -Adam
Hi everyone,
This is my 1st post on this site–so glad I found this site! I’m currently typing on my phone in the fetal position…where I’ve been for the better part of 2 months. I had been in remission for 3 years (was diagnosed with Crohn’s/colitis in ’09 and the first year was tricky and not-so-fun) I tried Asacol-nope! But when I found 6MP, it was like my miracle drug. After 3 years on it, I had the occasional drink, coffee, greasy food when I wanted and literally only 1 or 2 AWESOME poops a day. Funny to call poop awesome, but I would literally call a friend just to relay the size of something that just came out of me, with a “I feel like a million bucks!!” Anyway, my point is, very out of the blue when I started flaring in July. A sigmoid confirmed yes, whole left side was now active UC. Started Uceris and my 6MP was raised. This last month, I’ve only gotten worse. This last week, unbearable. Bloody, runny stools 15 times a day, and cramping that is so unbearable, I’m not sure if I may faint or throw up. Even drinking water causes cramping. In desperation, I started Prednisone yesterday, 30mg. I swear I’m worse! No improvement when in the past, it worked almost instantly. I went on here to see if that was normal, and seems it is. Adam and everyone that contributes, THANK YOU. Its very easy to seclude yourself with this disease when you’re flaring, or think no one understands. Everyone’s insight and encouragement (and humor!!) is such a help. Now if you’ll excuse me, the toilet calls…..
I was diagnosed with ulcerative colitis in june this year, i was admitted to hospital after my colonoscopy where i started on 50mg prednisone, i have been slowly tapering since then i am now down to 2.5mg and cant wait to get off them. I have been moody, had insomnia, my energy levels dropped considerably, to the point where i had to take time of work. I am a nursing student and i had no drive to study or go to class what so ever, my appetite increased and my motivation to exercise decreased. I have put on 7 kilograms and have had ‘moon face’ since bout a week into it. In saying all this, this drug saved my life, i used to have up to 15 bowel motions of diarrhea a day, severe cramping and abdominal pain, i was anemic and depleted of about every nutrient there is, dehydrated, i had dermatitis and eczema. This has all gone away since being on predisone combined with my other medications, if you are getting down about weight gain or the other side effects, just think of what you would have the horrible symptoms of this disease or a few side effects that are only short term ?
I was diagnosed with UC in July, but severe UC, I get lesions on the body and severe joint swelling plus the all favorite 15 plus BM’s a day. I have been hospitalized twice since I was diagnosed and my DR both times had me on predisone for two weeks and lialda as a daily drug indefinate. But three months it returned more severe than the first episode, I had half dollar lesions on my body and severe arthritis, after four days in the hospital they released me taking asacol three times a day (as a lifetime med) and 60 mg of predisone for two weeks then tapering down 10 mg a day until done. Well this week I tapered down to 10 and the diarrhea has returned. I hope in time that they find the right treatment, I just turned 41 and it has been debilitating… The Dr said my next treatment may be going with the bio treatments… If that doesn’t take the dreaded removal…
Before any surgery please read about a Paleo lifestyle with U.C. I saw drastic improvement after only 4 days…on the downside after a month of feeling “back to normal” I re-added beer, corn and rice to my diet, and after about 3 months of re-introducing, my symptoms have come back this time with a vengeance. Unfortunately this time, my UC has not cleared up as fast, I’ve been following Paleo loosely (mostly due to holidays) for about 2 weeks, and strictly for the past 4 days, not the same drastic improvement I had last time, but I am holding out hope that my body will come around. I’ll try to keep everybody posted…
Hello fellow Colitans or Colitisites, anyways I ‘m 54 years old and I’ve had colitis since I was diagnosed at 29 years old. Probably had it longer but never knew what it was before then. I’ve read everyone’s entry and it seems like I’m reading my own. Each one of you is going thru what I am. Colitis sucks big time. Since 1989, I have had probably 10 colonoscopies. O God, they are so much fun. I especially love the disgusting prep they make you drink to clear out your pipes. I have been on all kinds of meds, sulfasalazine, mesalamine, rowasa enemas,Lialda, asacol. Why would you call it asacol? Most meds just mimic the same symptoms as colitis. I’ve had so many flares I could light a highway. Now its prednisone’s turn. I can’t wait to look like Jerry Lewis. I want to thank everyone for their insight. Good luck in your future with this terrible disease. Kick its Butt!
How you been doing since 2014? Did the Prednisone help back then?
This has been an arduous journey. Diagnosed 2009ish. his thing has ruled my life……Messed with my brain, and yo all know, so I will cut the whine and cheese. I have had aprescribed bottle of prednisone since 2012 that i absolutely REF– USED to take. But pain, bloody mucus, and the 20 month prego look….finally one out! Started prednisone yesterday. I take any new med at night because I am prone to every side affect there is. Just glad to find my tribe. bless you all!!!..
I have been mostly in remission since UC diagnosis 21 years ago but the last year has been a challenge. I finally gave in and went on 40 mg. Prednisone. On the same day, I began a Paleo diet refusing to be someone who gained 40 lbs. from the intense appetite. 3-1/2 weeks later I’ve lost 7 lbs. and feel great. So far no sign of the moon face although I am watching for it carefully. The Paleo diet is well-known for being anti-inflamatory and I am very happy with it.
As far as the Prednisone, not too much of a change yet, every day is different. The only things that are the same are the racing heartbeat for a couple of hours after I take it and the lack of sleep (4-5 hours for this girl who always needed 8, ugggh). But my doctor says 40 mg. works for most people so he wants to give it a chance. I agree.
I’ve always been an 8 hours-a-night sleeper but currently have insomnia, presumably due to the Pred. I was waking every night at 3am and expected this to improve as I tapered. However I am down to 5mg now and barely sleep all night. Anyone else experienced this? I wonder if it might be a blood sugar thing or something else rather than the Pred (although I slept fine, albeit lightly, before my flare). My doctor gave me sleeping tablets (Zopiclone) but they don’t work (I think they are more useful in inducing sleep than maintaining sleep). Getting a bit desperate for some serious zeds – it’s affecting my work and (more importantly) my cycling :)
51 y/o male…guessing I’m one of the “lucky” ones. Seems that UC seems to hit before age 25 or after age 50. Mine hit me hard in mid-July. Was always a once-a-day kind of guy and healthy other than the occasional cold and flu type stuff. Cramping, D, and generally feeling awful. Finally saw a GI Doc when I ended up not being able to force myself to go to work. That and I dropped 20 lbs between mid-July and mid-August. Colonoscopy showed UC throughout and was startd on 40 mg of prednisone on 2 September. 3+ weeks later, still on pred and am a believer of what it can do. Everything seems to have normalized and I’m seeing my Doc in 10 days. I’m guessing that’s when we’ll talk about reducing the pred and starting on a maintenance drug? Just guessing at this point! Anyway, prednisone works well for me, although I do find that 4:38 a.m. seems to be my new natural alarm clock time! And…I get hot and sweaty any time inhave to do anything physical…or stressful. I find that when I have to speak to a group, do briefings, make presentations, I get hot! Those of you have have been dealing for lots and lots of years…my hat’s off to you!
Prednisone has worked wonders for me. Insomnia has been the only major side effect. I wasn’t sleeping before as I was making as many as 40 trips to the John between Midnight and 8 AM. (during this time I did get relief while sitting in a hot bath…but soon as I got out I would have the urge to go again) I take my prednisone with breakfast to try to minimize the extra energy at night.
Unfortunately, after tapering my prednisone , we introduced a maintenance drug Balsalazide Disodium(Colazal) and it undid ALL the progress that had been made. I was one of the few who got worse from this drug.
Now tapering down from 40 mg prednisone and will likely go on a different maintenance drug. I am having no significant side effects from gradually introducing a herbal remedy Boswellia (Indian Frankincense). I also take fish oil. Hopefully they will be sufficient in reducing the UC inflammation.
I’m 44 years old, and until this year I had never spent a day in the hospital, nor had I been diagnosed with any serious condition. But for a period of several months in 2014, I was consistently losing weight. I was usually about 197 pounds, then down to under 160. I started seeing blood in my bowel movements, knew something was wrong. I was diagnosed with ulcerative colitis after a colonoscopy, and subsequently prescribed mesalamine. Didn’t make much difference right off, but when I started the steroids (prednisone), boy a light went on. I concur with the author of this article, you might think you’re cured. It’s kind of a perfect coffee high, and you won’t be going to the bathroom nearly as much. Like the author, I had had tons of bloody movements, and a lot of pain prior to prednisone. I’ll mention that I’m also on Tramadol (a non-narcotic painkiller) every 4 hours or really less, just as needed. Luckily, the prednisone hasn’t caused me some of the side effects like moon face, or severe weight gain, or severe acne. I will say that I’ve had a few more pimples though (guess I’m one of the lucky ones), and it is harder to sleep at night (insomnia). Sure beats the alternative right now. So it’s going to be different for everyone. If it causes your appetite to increase, you’ve got to have some willpower or at least make wise food choices or you’re going to gain fat. I think a lot of people lose weight when their colitis gets moderate/severe. There is an opportunity to get to a healthy weight and with UC there are many healthy things that you can still eat! Only thing now is, I’m being tapered off the prednisone, and I don’t know what that means for the future really. My GI doctor says there are others things I might could go on, so we’ll just have to see. I’d sure hate to see blood in the toilet again, but as they say, I’ll have UC for the rest of my life. I had no idea that was even possible – I used to eat a lot of whole grains, nuts, anything I wanted and plenty of the stuff they said you should eat, all the while destroying my colon. Can’t turn back the clock, but at least I know where I stand so I can do something about it. Good luck to everyone, I’m right there with you!
Hey Adam and other UCers. I have a few questions. I posted on the site a few weeks ago about my proctitis possibly turning into colitis. Well after seeing my GI he thought the same thing, scheduled a sigmoidoscopy, gave me uceris and oral and enema mesamaline…unfortunately due to pre-auth I didn’t get the oral mesamaline until it was too like and the uceris didn’t work. I’m on vacation, leaving today, visiting my family, and afte dealing with my multiple bathroom trips and abdominal cramping throughout the days I woke up Thursday morning with the most excruciating pain I’ve ever felt. I tried to deal with it hoping it would pass but after 45 mins I couldn’t handle it. Went to the ER, was given morphine, IV steroid (80mg), IV fluids and a catscan. The cat scan revealed mild diffuse colitis aka mild pancolitis. Total bummer to find all of this out while I’m on my vacation…so I spent the next three days in the hospital. 80mg 4x then 40 2x Now I’m out on a tapering dose, 30-25-20-15-10-5, also to start taking mesamaline when I get home and pick up my script. Anyhow! Though I’m concerned about the side effects I’m also wondering how long it takes to “kick in?” Rather than taking all 6 pills at once I’m doing 2 every couple hours. I woke up with some liquid D, went a few times already and took my 1st dose of prednisone. Has anyone else experienced some D whole starting their tapering dose? When I was on the 80 IV I had no symptoms, it was amazing but now that I’m tapering I still have a few bug NOTHING like I was experiencing before. I’m wondering if because I was on such a
High dose of the IV steroid that it might just take the pills a little longer to kick in…talk about the most depressing vacation ever. This illness sucks, I wish my GI explained more to me when I was diagnosed with mild proctitis rather than saying I will likely never have any worse symptoms. Thanks to those words I never took it seriously and here I am. Hating myself for not taking the meds as directed and feeling like life is over. It’s so incredibly disheartening for someone to tell you that you have an incurable, chronic, life long, medicated disease. Not the words you want to hear when you’re 23. I’m also going to start the SCD diet…
Hi Andrea,
It sounds like your overall questions are about what to expect while starting an oral prednisone tapering program.
And unfortunately there is no concrete answer that I can give you and I suspect most GI docs who have treated UC patients would tell you the same. Reason being is that we all react a bit differently to medications, and some has to do with the severity of your current symptoms, any other medications, your lifestyle, and probably a few other variables I’m missing. So I can’t give you a concrete answer as to what to expect and when you’ll start to notice positive improvements.
For the UC’ers who have been around the block for many years or at least many trips to the prednisone world…I think most would agree that it is not entirely predictable as to exactly how long things will take before benefits are noticed and how long diarrhea lasts etc… I’m a bit surprised though about the idea of a few pills every couple of hours if you were referring to the prednisone. I have not heard of this technique before. Rather, I’ve heard of scenarios like this for a 30mg/day dose —- 20mg in the morning with food and 10 mg in evening…or 40 and 20mg when on a 60mg/day dose. I would double check with the prescribing physician (hopefully a GI doctor who has experience with Ulcerative Colitis patients) about how you’re taking the prednisone as there might be some professional suggestions there on ideas as to what might work best for you.
Also, you should consider reading up on the Prednisone Reviews page: https://ihaveuc.com/prednisone-prednisolone-reviews/
Lots of stories there from other UC’ers about their experiences.
best of luck and keep us posted,
-Adam
Adam, Thank you for the prompt reply. I have 5mg tablets, and the pharmacist suggested splitting up the 6 pills in two hour increments in order to avoid any immediate side effects (upset stomach, nausea, etc). I am really happy that I found your page. I joined another site, healing well, and I received nothing but negative energy and feed back from “old timers” with UC, telling me diet wont make a difference etc etc. After receiving all the negative feedback, it made my hospital stay pretty depressing. Is there anywhere where I can directly contact you to ask you about your UC, I see you had severe pancolitis and it looks like you’re doing a lot better….I would love to just ask a couple questions. Thanks
Andrea
Update: Was re-hospitalized in early 2015 for a week (unbearable pain & diarrhea). Mesalamine & other tablets didn’t work for me. Gastro doctor put me on 1 shot of Humira every 2 weeks after this ‘relapse’. Humira is working for me. I’m still on prednisone, tapered down to 15mg/day (can’t stay on corticosteroids, though they work wonders at first, they have negative side effects). Doc wants to go to 2 shots of Humira when I can work it out with insurance. Still take Tramadol for pain, but maybe only once or twice a day. Used to go to the bathroom like 20 plus times a day (I know this sounds impossible, but it was true), more like 8-10 or so now. Plus my bowel movements are mostly solid. I have urgency, but not making it to the toilet only means that I have gas. I have modified my diet, but as doctors told me, I can test different foods out to see how my insides react. What I’m saying is I did stick to a diet that avoided whole grains and crunchy things like veggies, nuts, and others that are kind of slow to digest (there are plenty of resources online to give you ideas for a colitis diet). I think moderation is the key when going back to a somewhat regular diet. Will say I have enjoyed eating tons of chicken and pork chops. I used to eat double portions of ALL vegetables, now I mostly eat soft carrots or green beans as my side. Protein is a total ‘yes’ for this condition. You should drink plenty of water, too. I actually have moderate constipation now, considering where I’ve come from. I apologize to others if my last post seemed like a downer, especially when I said “as they say, I’ll have UC for the rest of my life.” Remember that while pain can directly cause depression (and I have had some really down moments, please believe me), you just need time to heal so you can work on a game plan with your diet and medications. No, it’s not fun, but we have a lot to look forward to, and there is plenty of hope.
Freddie,
I do believe you when you say the 20 plus times to the bathroom. I am sooooo at that place right now!
The older we get, the harder it is to rebound. Good luck.
Hey guys, I was just discharged yesterday from the hospital after a severe attack. I was diagnosed with UC in Mid-June 2015 and was put on oral mesalazine (2g daily) after my colonoscopy together with the rectal enemas.
I was a healthy young male prior to this and suddenly I had to deal with bloody diarrhea and numerous toilet visits a day. It was an extreme shock to my lifestyle and my social life began to halt to a standstill and I was mentally and physically controlled and chained by the disease..
Despite being put on the initial line of treatment, my symptoms continued to worsen and my bowel movements increased from 6 times daily to 10 times a day and I was finally admitted last week after running a high fever of over 39.0 for a whole week that barely dropped to 37.5 even with panadol.
I was put on so many medications that it does take sometime to try and recall everything; IV ciprofloxacin, 100mg IV hydrocortisone every 6 hours, potassium drips, magnesium drips, blood thinning injections etc. Thankfully, my condition improved the moment I was put on steroids and my bowel movements gradually decreased over next 3 days of steroids. I was briefed of the possible escalations in treatment options, including biologics (infliximab) and cyclosporine or even surgery to have my whole colon removed. It was terrifying having to face the possibility of undergoing such a major surgery before I had even turned 21.
Anyhow, the blood in the stools eventually disappeared and my bowel movements slowly decreased from 10 to 8, to 4 and as I am typing this, I’ve only had 2 bowel movements for the whole of today! I am currently on 40mg prednisolone and 4g mesalazine as well as the rectal enemas and I’m praying hard that I’ll be able to taper off prednisolone successfully and go into remission. So far, dealing with the side effects of prednisolone (occasional heart palpitations, greatly increased appetite, swinging energy levels, terribly interrupted sleep, ‘moon face’ and swollen feet) hasn’t been the easiest but anything beats the draining and debilitating nature of my UC before steroids.
I wish only the best for all of us UC-ers in achieving remission and maintaining it for as long as possible. Cheers!
I have had UC since my 20’s (now 37) but never had a bad flare until this year. I was hospitalised in may on IV Hydrocortisone and went home on 60 pred, sulphasalazine and mesalazine. The IV steroids halted my symptoms immediately and I tapered off the pred but when I got to about 10mg my pain started to return. I saw the doc and he recommended I go back to 15mg and stay there for a while but I have two major concerns. I have been on 15mgs for several weeks now and the pain doesn’t seem to be diminishing. I get sharp pains when I move sometimes and a constant ache most of the time. My BAs have returned to normal and no blood. Pain is my only symptom. My second concern relates to the first in that The steriods have caused me to gain 5kgs in the past few weeks. (12pounds). I worked hard to lose 15kgs last year and a third of that work has been undone in less than a month. I want to stop the steroids but I’m worried that I’m still in a flare and the symptoms will return if I stop. But I am so SICK of gaining weight!!! I’m 20kgs over my recommended weight and this whole situation has me demoralised and depressed. How hard is it to lose steroid weight gain? will my symptoms get worse if I stop the pred?
I went on 40mg dose of prednisone about 5 months ago and saw my symptoms disappear literally overnight. I eventually tapered off over the course about about a month and a half and was symptom free for the next 4 months.
I did sometime experience the “steroid high” but other than that and some occasional fast pulse I didn’t have too many symptoms. However, once I was off the drug I noticed lots of pimples on my face and back and I still feel like my heart rate and lung capacity just aren’t quite right.
My symptoms recently came back in another flare up and I’m considering going back on pred (maybe only 20mg this time since it worked so well for me the first time) but am also looking into low dose naltrexone. Seems like a good bet since it has been shown to help and has less side-effects.
My son is 14 and was diagnosed with UC 7 months ago. Uceris and Lialda put him into remission right away until last week. It is now his 5th day in the hospital. He is getting an IV with prednisone and is not getting better. He will have a colonoscopy in the morning to see what is going on. Can it take longer than 5 days of IV prednisone before there is any progress? What other options are the for him if he should not respond to prednisone?
Alex, I am always sorry to hear of a child suffering with this debilitating disease. It’s hard enough as an adult, but we learn quickly to slow down. I must be so hard for your son. I am 49, and was diagnosed 13 years ago. I have not had to be on prednisone since first diagnosed, until now! I have managed with maintenance drugs such as meszovant and at one time immuran. I can only encourage you to be patient with the prednisone. It will work, but there is no one size fits all. I do recommend a diet overhaul as part o your plan whether it be SCD or paleo. I truly believe diet plays a key role in our flare ups. I wish you strength in this battle with your son. I wish your son well soon! Please keep reading this site, great advice and help in navigating your medical journey. It has helped me immensely, thank you Adam!!
Yeaaaaah Kathy!!!!:)
I first had colitis when I was 30. I took sulfasalazine for a couple of weeks and had total remission until I was 50. I am now 76 and still battling. Last week I had some cookies,I love cookies,my intestines went bonkers. I checked the ingriedients and found a good dose of preservatives, then the bloody stops in the bathroom.I went to the doctor,he let me get 20, 10mg prednisone pills. After one pill, no blood and almost normal bathroom stops. I do take 8 sulfasalazine a day,and take 2 teaspoons of fiber every morning Today I took my 2nd prednisone pill.If 10 mg works this well I probably could take 5 mg for a longer period of time without much worry.I know 76 sounds old but I can still walk fast and hit a golf ball over 200 yards. I think fiber is very, important !
I heard some rumors about a UC’er cranking a 5 iron 200 yards….I think he went by Carl too:)))))
Thanks for sharing Carl!
-Adam
Hi all, looking for some guidance or other’s experience with my scenario – I was diagnosed Mild – Moderate (more on the moderate side I fear) 18 months ago… long story led up to that including a heart condition and the installation of an internal cardiac defibrillator, oldest son in rehab, father in-law was living with us (dying) and lots of stress at work, plus not really the best diet at all times… anyway, this all led to active UC. Since then I have been on Lialda, Canassa and Uceris (Steroid) specific for UC and it has helped (with diet) me live a somewhat ‘normal’ life, with some concerns while traveling and away from home and usual diet, rest, exercise.
It all came crashing down about 4 weeks ago when I started feeling more and more onset of symptoms, more frequent bathroom trips, less feeling of stability and confidence with traveling for work and eating out, etc. I admit missing my medication a few times and I possibly drank a little wine or gin from time to time (I was feeling good), so my confidence may have gotten the better of me to some degree. The crash was on a Friday night after being in the office that week and being admittedly busy with work and after work activities like mountain bike riding, eating out and not getting really good, solid sleep. We met friends for dinner that Friday night and I was very hungry for lack of good diet that day, had dinner, and could not wait to leave and get home as the explosion then happened… the food I ate came out (in whole), barely digested, all night up and down. This went on through the weekend until I was able to see my GI on Tuesday after being essentially in bed since Friday. He put me back on Uceris and prescribed two antibiotics and scheduled me for blood tests. I took the first antibiotic Tuesday night and was fine, plus the Uceris. I felt a little better in the AM Wednesday so took the second antibiotic (Ciprofloxin) and went to the hospital to get blood drawn for blood tests he ordered. While there I went into severe allergic reaction to the Ciprofloxin. Nasal passages closed up, hives, puffy lips, red, swollen ears, all the good stuff! I went straight to the emergency room and they treated me there for anaphylaxis with epinephrine, fluids & pain medication. I had to run to the toilet while there as this was like throwing gasoline on the UC ‘fire’ I already had burning in my gut. Worst day of my UC journey by far to date. They sent me home after that with a dose of steroids that seemed to (temporarily) help. No antibiotics at this time due to the allergic reaction to the Ciprofloxin. For two days I was able to tolerate things but they progressively got worse and I was in bed full time, only getting up for (many) bathroom stops, mostly with nothing to show for it except lots of pain and fever, chills and what I call contractions… uncontrollable urges to push and bear down on your gut that required rapid breathing (like birthing) to prevent busting a gut or popping a blood vessel. The worst pain I have ever felt. I noticed I could feel something moving inside me when this would happen so my wife took a picture and I had a large hemorrhoid coming out of my anus when these contractions would occur. There was fresh blood and the pain was excruciating. So back to the ED I went to have them checked to be sure they did not require surgery (thrombolytic ones may require surgery). I was ‘lucky’ they were just large, internal and bleeding. I got some foam treatment and I was told I could take Tylenol for the pain (news to me) so both those helped me sleep a bit more, still getting up 6 – 8 times per night. I had lost about 15 pounds (143 at the lowest point) after this 1.5 week ordeal. Went home again and kept on the routine of trying to eat, sleep and deal with the pain and hemorrhoids with the flare and the contractions. Was not making much positive progress and was not sleeping well or eating well and I started to not want water or food – It just came out the other end and made me have to go more – less rest. I was on a slippery slope of decline – rapidly. By the end of the second week I was not able to sleep or eat and needed help with the pain which had not subsided much if at all. I was at the end of my tolerance rope and my wife was tired from trying to care for me and keep me hydrated and medicated and fed, the tipping point was the fever, and this is where I need help / advice… My wife recorded me with a 102.6 at home and I felt it – chills, etc. At that point we decided I had to go back to the ED because of the fever and pain. I was doubled over in pain and I can usually tolerate a lot of it, could not walk much, the car ride to the hospital was torture and I limped into the building. I had zero strength and walking was a challenge. They checked my temperature, put me on fluids (IV), took a CT scan, blood work, the whole gamut of testing including a stool test (liquid). My temperature was lower there (I was mouth breathing a lot due to the pain) but it was present. My white blood cell counts were a bit elevated but no other significant findings. They gave me pain medication (IV) which was instant relief and I was able to close my eyes and rest a bit. They contacted my (on call) GI Dr. and it was decided to put me on 40 mg prednisone and a new antiobiotic just in case of infection. After a few hours I went home and back in bed. I felt a bit better due to the fluids, pain medication and some rest. That night (this is where I need the advice), I had profuse sweating throughout the night – dripping wet sweat through my clothes (twice) and my bed sheets, with some trips to the bathroom, but the urgency was less and the contractions were subsiding a bit. By morning I could walk, talk, drink and function. One night – broke with a major sweat overnight. Is this ‘normal’ UC type of ‘recovery’ from a significant flare / event that lasted 2 weeks? I was on the prednisone and the antibiotic treatment just since being in the ED the day before. I started eating again (slowly) and drinking and forcing myself out of bed to walk around (my muscled had atrophied from being in bed for so long) and my body was consuming itself from lack of nutrition. That week (last week) I was strong enough to go to Tufts Medical Center in Boston to see a UC specialist there and they are putting me on Humira (I have had my first dose already) as his assessment was that this was a severe UC flare and this was the right course of treatment. My question and what I am writing about is if anyone else has had a severe UC flare ‘break’ like I did, overnight with severe sweating and almost overnight ‘recovery’ in that way? I am questioning if I had an infection for the 2.5 weeks that the GI and ED Dr.’s were calling a purely a UC flare, or if this was a combination of a UC flare (yes) with an infection, plus an allergic reaction to the Cirpofloxin, which sent me into a deep UC flare and infection combined. How else do I explain the overnight dramatic change? Has anyone else had that type of dramatic recovery? The reason for my asking is not to second guess the Tufts specialists, but to be sure they are seeing the whole picture including the possibility of the infection, allergic reaction and all combined. Humira is probably the best next step as I cannot physically tolerate another debilitating set of events like that, but I also do not want to have singular minded GI Dr.’s over-treating or over-reacting to what was really a bizarre confluence of events (with UC underlying), that set me on a course of treatment that is beyond the severity of my UC condition… Any advice on this ‘night sweat miraculous recovery’ is very welcomed… so it can help me judge if this was really all just a really bad UC flare or a very unfortunate, bizarre confluence of multiple issues, each exacerbating the other… Thanks all, your support is invaluable.
I am 78 years and tappering prenisolene from 12mg to 10mg.but now my pains have returned and won’t go away ….what should I do