If you have ulcerative colitis, you very well may have a whole bunch of colitis flares along the way(but don’t you worry).
After being diagnosed with UC in October of 2008, I have officially learned that a colitis flare may come up from time to time (even when I thought I had found the save all diet solution with the SCD diet plan…symptom and medication free for 8 months is a pretty good streak though right?).
But, there is a big difference that YOU and I with colitis can make in terms of how we go about handling our own colitis flares.
Now for the disclaimer:
I am in no way a doctor, expert, or even a very experienced UC patient, but I do have ulcerative colitis, and I seem to be finding a way out of the current colitis flare that crept up on me a few weeks ago, and I want to share some ideas with the rest of the colitis community.
First of all, I like to hide my symptoms from others.
Second, I was in denial for years about my UC symptoms prior to being diagnosed.
Third, I was as well in denial for about a week when I started feeling some symptoms coming up several weeks ago.
FRIGGIN STRANGE how it’s just so easy for us to deny our colitis symptoms, especially when we know exactly what they are.
Some examples of my denial are:
1) I started to see some blood in my poop but brushed it away as nothing to worry about
2) I started to see some dripping blood in the toilet, but did the same
3) I started having some cramps in my upper abdomen, and thought not much of it
4) Started to get some joint pains in my elbows and shoulders ((ALL Symptoms I was having a year ago when my colitis was active))
So, once I came out of denial, and realized I was not a super human beating ulcerative colitis, and more or less a normal colitis patient who has flare ups from time to time, I tried not to stress out at all. And, I think I did a pretty good job at staying calm. The reality is, I was SUPER severe for months and months in 2008-2009 and right when I was ready for surgery, things got better with a MASSIVE DIET CHANGE. And yes, my colon started working properly again(taking hard poops without blood etc…) So, my thinking was, if my colon has proved before it could come back and work properly, it could definitely do the same again.
So along with trying to remain as calm in the brain as possible, I also started to go back to basics with my diet. The diet got me out of my initial SEVERE colitis symptoms, and I thought it should be the one to do the same again.
Some changes I made were the following:
1) No coffee in the mornings
2) No more potato, or at least very very little compared to 3-4 times a week
3) Finding ways to just relax more, and not sweat the small stuff in life.
One thing I did not do was call the doctor. Call me an idiot for not letting my GI doctor know I was finally in a flare, but on the ego side of it all, I haven’t been to a doctor since November 2009, and wanted to keep that streak alive.
As of the past few days, I have begun to see some great things in the toilet bowl, and also the bleeding stuff seems to be nearly gone. And, mentally, I am feeling really good that I didn’t freak out when the UC symptoms crept back into my life. I can remember the days clearly last year when I was counting the times I went to the bathroom, and making sure to inspect every last inch of what was in the toilet bowl. And this time, I somehow took a much more relaxed approach to having colitis symptoms. I know it is very hard to do, to stay calm when you are seeing blood in the toilet. Especially when its staring you in the face on some nice white toilet paper. But, it can be done.
The UC disease is a strange one. It has its own personality. It can go away, and then come back. Bowel movements can be great for quite some time, and then slowly start to degrade for us UC patients. And, other symptoms like joint pain, and night sweats, and bad attitudes can all flare right alongside the UC.
BUT, each of us can play a very big role in recovering from colitis flares. I believe that!
I pretty sure that the following with a little luck have helped end my colitis flare:
- maintaining a positive outlook on managing the disease(VERY IMPORTANT ALWAYS)
- strict limits on diet (no alcohol and some hardcore sticking to the SCD diet) AND
- big amounts of relaxation
Here is a little video from June 16th, 2010 which talks some more about my recent colitis flare:
Best of luck to you, especially if you’re in the middle of active colitis symptoms that crept up on you from nowhere.
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 am in a flare right now. Well let me rephrase that… I started to flare approximately 39 hours ago. Yay – party in my bathroom. I am in denial. I am always in denial until my bowels are filled with mucous. Then I am sad… this post made me feel 53% better than I did 5 minutes ago. :)
Thanks & love the website pic (little toilet people around the world)
Good luck with getting out of your flare. YOU CAN DO IT!!!!
I hope you enjoy the website too. There’s hundreds of other people’s stories to read also!
I am 18 and i am having my first flare up in four years and it completely sucks, really hating the pain honestly if it weren’t for that tho i think i would be ok, but i have reached the point of seriously just considering having my colon removed. We shall see
Can you tell me what treatment kept you in remission for so long.
My partner has UC. He is having a flare up right now and it’s awful. He is moody and mean, he is pooping a lot of blood and I just don’t know what to do. He wont go to a doctor and I can’t find anything on how to make it better. He was drinking a LOT of soda and alcohol until just recently. I’m at my wits end. I want to help but I can’t. I feel so helpless. Any advice on what he can do to help his issues? He eats nothing but junk as well *eye roll*.
I forgot to add, that he is in huge amounts of pain with his joints and limbs.
it’s essential that he sees a doctor if he is pooping blood! that’s not something to wait around with, in the hopes of it just getting better on it’s own. I’ve heard of and seen WAY too many people dreaming for that to happen, and it doesn’t. it can lead to a ruptured colon which is exactly what nobody wants. my advice would be for him to see a doctor ASAP. that’s what he needs.
Spot on. I delayed once and my doctor said that if I ever did that again, they might not be able to save me. Flairs can be serious and very dangerous if left untreated.
Prednisone and then some more prednisone. Your doctor must prescribe it to yous.
Hey there Adam,
Glad to see you have things under control yourself, I was diagnosed at only the age 15 at the start of my Sophomore year in high school and nearly died! Had 2 surgeries up to now and currently in a very bad flare up, I have every symptom (blood,very weak energy levels,strong aches in both shoulders and leg areas)
As of right now I am only 19 and finding it hard to seek help for such a problem,I swear the disease has a mind of it’s own! Reading these stories and your newsletters gives me some new hope now, I would just like to see improvement for not going to the hospital which I’m currently thinking if I should go today or not.
You are right, this disease does have a mind of its own. But, it’s not the end of the world, and you will be feeling better in the future. As for your current condition, you should realize that there is no shame at all in going to the doctor or hospital when you are feeling really bad. If you are seeing symptoms whether they are severe or mild and you don’t have a good plan in place or if you don’t know what to do, then most definitely seeking professional medical help for out of control ulcerative colitis is a great idea. I wish you the best Ismael. Take care,
I believe I am denial and didn’t realize until I read this post! I did actually start to think yeaterday there may be something wrong. A few weeks ago I had sharp eye pain, my join pain has gotten much worse, elbows, shoulders, knees lower back, neck and big toes. I have a great deal of constipation right now but some days it is diarrhea. Also having a difficult time eating. My stomach is very destented. I also have right sided pain and when sleeping have to sleep a certain way. The days of weakeness are extreme!!!!! Not only that but my anxiety level are pretty bad right now. So in writing this I am coming out of the denial. Work doesn’t know so I am afraid to take any time off. To top it all of I believe I have a fissure. Thanks for listening and helping me realize I do need to go to the doctors.
For sure, its alright. But if you haven’t already, you should definitely go see a doctor ASAP. there is nothing to wait around for.
And, the best news is that there are Gastroenterologist doctors who specialize in this exact stuff… believe me, I’ve seen plenty.
let us know how things go for you. hand keep your head up, you don’t have to feel this way forever!
I suggest you nip off to the doctor. That pain is usually reported as left side pain. Your entire colon might be affected this time.
My boy Bruce of 10 years has JA dx 3 years ago and last Feb. 2011started to complain of constipation….no he wasn’t holding it in. 30% of UC patients have constipation too. 1 week in hospital last march ,lots of blood and clots and 60 mg of pred which caused him to have glaucoma. Glaucoma gone. Canasa, remicade, asacol, made him not have a flare until…last Thursday….ya….joints were a bit swollen and he complained of not feeling well…just blah…we right now take remicade every 3 weeks for his JA . uC is good for a whole year. Poor kid went oh maybe 12/13 times yesterday…UC not so good….started canAsa again for bleeding, 800mg Asacol too. 30 mg of prednisone…his UC is in rectum, lower left side. Colonoscopy last year showed lovely pics of what looked like hamburger. So motility is up, mucus is up no clots just blood mixed through…prednisone started 2 days ago and Dr knows. Wants to know on Monday how he’s doing. I showed him this website and a pic of you…this is important. He has never seen anyone have this, so thanks for this
website. It was important to him. Sometimes seeing someone especially male for a boy of ten makes all the difference in the world…doesn’t feel so alone! Thank you so much…remicade infusion onThursday coming up. We just really have been trying to keep JA under control…Bruce was very sad last night. It’s scary for him but is in much better spirits this morning, despite how much he went this morning. Thanks Again
Good to hear from you, I wish it wasn’t under these UC circumstances, but don’t worry, UC symptoms don’t last forever, and you guys definitely have options. I’d encourage you all to take a look around the website, and read some of the stories. There are over 900 stories on the site now from UC’ers from all over the world. The dropdown buttons for “Stories, Surveys, Drugs, Diet, etc… all have links to literally hundreds of other stories I’ve posted from others.
Also, if you want to watch some videos, alot of people tell me they like watching them as some are a bit funny, but feel free. you guys can go to http://www.youtube.com/ihaveuc and all my videos are up there.
Tell him to HANG IN THERE, things will get better.
It’s been since Feb..Bruce went into hospital for 10 days to calm UC down in March. Colonoscopy showed he now has it all the way through..pan colitis!!! We were told that he had to have a colectomy/colostomy and tried to calm gut down for 10 days on 60 mg of prednisone. We took him home to ween him off for surgery that was planned for April 26. Did MRI and they found at that time(1st week of April) he looked good, no thickening etc..well he’s only had UC for a year and 2 big flares. 1st time 5 days in hospital, 2nd time August with pain only and now this time 10 days in hospital. So they go do another colonoscopy and his gut looks perfect…seriously! So guess what no surgery…yay big party. Doc says pain from constipation..Um k…but he doesn’t have any. He’s on 2 double doses of Myralax…ok so we go home…my 10 year old kid told me the dr was full of sh!!. My kid even knows something’s wrong. We are now at 2.5mg of prednisone and he says he hurts at about a 9. A 12 when you press on his stomach. I gave Him tramadol last night and the pain went to a six. So I now know there is inflammation. But he’s not bleeding. Can you still have pain, lots of gas and gurgles without blood. Is what’s left of the prednisone holding the blood off? We will probably go to Cincinnati children’s hospital. What a mess…this kid can’t go through this anymore. Dr thinks it’s anxiety…well why did his pain go down while on tramadol. Oh and he just woke up and the pain is back up to a nine. And my kid just wants to be fixed not. This is not from anxiety. Does he have it ? Well I would. But that’s not what’s causing his pain. So can you have pain without blood…also dr said dyclomine would help the spasm…it didn’t. He said if it didn’t then it wasn’t his UC….but dyclomine has never worked for him…UGH! Trying to get to Cincinnati ASAP…there #1 for gastro.
most definitelly, lots of people can have pain and cramping symptoms while not noticing any blood in the stools. I know I myself have had some cramping feelings over the years even while not having any bleeding going on.
If he started his current prednisone course at 60 mg and is now down to almost nothing, that’s obviously a major prednisone transition, and in my experiences it takes the body quite a while to adjust to those changes. I’ve always found myself to have the best luck with tapering from prednisone very slowly. It’s been several years since I was on 60mg of it, but that last time I was at that level of pred, I went from 60 mg in May and finally tapered off hem in late October (6 months of a super slow taper, and VERY VERY slowly I tappered when i was down to the 15 mg/day mark. I think I hung on to 2.5mg for about 2 weeks before finally puling the cord and going drug free.)
I with you and your son the best. if you are double-guessing your current GI, no shame at all in getting a second opinion. I’ve had them many a times.
take care Beth,
Hi Adam love what you have accomplished with this site it helps so many people could you tell me your downward progression on prednisone I was as high as 60 now at 35 the GI isn’t real clear how he wants me to proceed
Thank you very much.
As for tappering off prednisone, that is a very personal thing that is different for everyone, (and each GI doctor pretty much has their own opinions on how best to do this..) So, with that said, what has worked best for me has been a very slow taper off prednisone (very slow), and by that I mean going from 60 mg/day to zero took me nearly 6 months several years ago when I did that. Getting down from 60 to 40 mg/day was only the matter of 3-4 weeks, but from there on out, it was decreases in 5mh/day every 7-10 days and then decreases by 2.5mg, and those final steps were also 7-10 days each.
No matter what, you need to talk with your doc about this, if you don’t like the one you have currently, I sure hope there are others that might be more on the same page as you on this important topic.
best of luck to you Don, and I wish you the best,
Thank you for keeping it real for us with UC, Adam. Stress is the thing that creates my flares, and the onset of a UC flare is stressful in itself! So, I relax(baths, sauna, read, massages, etc) as much as I can and watch what I eat, going for fresh vegetables, salads, and antioxidant-rich foods. So much of UC is inflammation, and the blood we see is a symptom of our body/colon attempting to handle it-much like your stomach contracts when there is a bad reaction or bug in it. Your colon is an organ that, for whatever reason, is inflamed and irritated. Jibjab.com has a cute card featuring an angry colon. http://sendables.jibjab.com/ecards/sendables/212/angry_colon I have found that what I eat directly affects my UC. Alcohol, processed foods, bread and dairy are my problem foods, so I stay away from them. Thanks for the heads up about almond butter. To those suffering, take Adam’s advice….stay positive. There is light at the end of the tunnel and you are not alone. The more we share, the better we’ll feel, and the more educated we become. There are no gastroenterologists where I am, and frankly, I think all they want to do is medicate UC away because they don’t understand it. Let’s help them understand!
Mannnnnn glad I found your site today. I was diagnosed, and actually in the hospital back in 2009 for UC. I got put on Prednisone (terrible, terrible side effects) and made it out after 5 days in a hospital bed. After the long tapering process required to get off of Prednisone, I didn’t want to touch that stuff ever again. My doctors were completely unhelpful in giving advice or a reason for the flare up, but they were very quick to prescribe medication. Can you sense my distaste?
I told myself I wouldn’t go back to a doctor for this disease until they actually knew something about it besides reaching for their prescription pad. I started to observe what causes flare ups in me based on diet and eventually figured out the main triggers that are common in my life. It sucks being such a huge fan of whiskey coke because it’s a double whammy unfortunately.
Asacol, the meds I was prescribed, basically did nothing to fix the problem (which I really didn’t expect to be any different – it’s basically a band-aid for something else that’s obviously broken). It was changes in diet and making sure that I was getting a full dose of vitamins and nutrients each day that led to my eventual regaining of health. I still fall off the train sometimes, and a flare up results, but it’s a quick reminder that I need to get my business right.
It’s nice to know a site like this is out there and that there’s perhaps a shared displeasure with the practices of healthcare professionals dealing with UC (and likely many other issues).
What up Dave,
I think we for sures fall into the same boat of thinking! Aint that a beeeeatch that the whiskey cokes are tough, I never was big into whiskey cokes, but I sure did a lot of jack on the rocks back in my drinking days. No more alcohol for me though, I do too good without it to play with that stuff, and since its been about 2 1/2 years without it, I don’t really miss it much anymore. You still drinking a bit? or you done with that stuff for now?
Hang in there, and keep winning the fight, sounds like you got to know your body pretty darn good, and that of course is not something that any ordinary doctor can teach a UC patient. Mainly because everyone is different(in my opinion).
Glad to hear from you, and please stay active with the site. lots of good stuff coming in the future,
I’m just wondering what everyone thinks. I am 27 years old and I have been having some similar symptoms. My mother had UC and was diagnosed when she was my age and she thinks I may need to go to the Dr. I have been having upper left abdominal pain and gurgling…not hunger pains. And constipation and diarrhea, not really sure if there is blood in my stool or not. I guess just wondering what you think. My other thing is my mother who just informed me that she had been pooping straight blood for a few months…not sure what to do….
Probably a great idea to go and talk to a doctor if you are experiencing anything that is related to UC symptoms. No shame at all in going in and seeing a gastroenterologist doctor who specializes in this sort of stuff. That’s what I would do. Best of luck Sarra!
Hi there, I was diagnosed 4 months ago, and in a constant flare since then. I’m taking an array of drugs,and have been taking on average between 5-7 Prednisolone tablets daily, reducing causes out of control flare up, I still get bleeding, mucus, frequent toilet trips, lack of energy, achy joints, mood swings, bloating and Sharp cramps. I see my doctor most weeks, live on a very restricted diet most the time and feel at abit of a dead end as I’m not making any progress towards remission! My specialist wants me to go on new tablets called Azathioprine, dose anyone else have experience of taking this drug? And any advice on helping my current situation would be great
What you can do, is go up to the top right hand side of the website, and in the “search” box, type in Azathioprine, and you’ll see quite a few differnet stories come up where that medication is mentioned. From there, you can write comments to other UC’ers who have used the medication directly in their stories and that should get you started! Hang in there Lauren, the UC symptoms and out of control feelings don’t last forever:) -Adam
Thanx Adam, will have a look now, and I certainly hope your right! :)
Hi Adam I was diagnosed when i was 16years old with left sides ulcertive colitus.Im 21 years old and
have had 2 children since and been in remission with both children, now my 2nd child is 5months old and slowley after having her my symptons got bad,i have never been so sick since being diasgnosed. I was seeing a gastrologist but since moved states and the closest specilaist is 10hrs away so im dealing
with basic doctors who have no knowledge on colitus and have put my on antiobiotics which made me worse.
at current im on Salfalk 4tablets 4 times a day, Imuran twice daily and prednisone 40mg weening off it at 5mg per week. Also trying priobotics. Im not to bad during the day now,i can eat with barely any pain and i dont go to the toilet but as soon as night hits i get severe cramps and bleeding,and the pain is so bad i vomit or nearly vomit? Do you have any ideas why colitus seems to play up at night? i cant remember the last time i sleep longer then 3hrs without waking up :( i can handle going to the toilet but the pain that comes with it is unbareable,iv even stopped eating tea to try limit this
My symptoms increase slightly at night sometimes, too. I’ve been told it is because the large intestine does most of its work in the mornings and nights. Which is why some people only have to go in the mornings and others at night. Not to mention the trips in between! For us ucer’s anyway.
I was diagnosed with UC in 2010. I take lialda, imuran, rowasa and remicade and continue to bleed. Last year my 15 year old son developed symptoms. All labs looked good but because of my history they did a colonoscopy and found his entire colon inflamed. Intitial predisone and maintenance apriso has worked well for him. He has seen how sick I have been and questions why it has been so different for him. I want him to be positive about his future. Any advice is appreciated.
The best bit of advice I think you can offer your son is that he will always have options with treating his UC. There are tons of different things you can do whether that is western medicine, alternative medicine, or even surgery. There are plenty of people from this very website who use all sorts of different treatments for their disease with great results. If your son knows that there will always be options for him in life, I would suspect that will make him feel better. Best of luck to both of you:)
I had been in remission for approximately 8 years. I ate a bison hot dog about 2 weeks ago have had symptoms of a flare since. It might just be coincidence, but the hot dog definitely had a strange taste. Was wondering if anyone has had their flare go away with just a change in diet.
I was diagnosed with UC about 48 hrs ago and I am currently in the hospital for it. I am 25 years old and never had any flare ups or symptoms until about 2 weeks ago when I had constant diarhea, bloody stool and continual cramping. To make matters worse, I was suppose to go on a 3-week honeymoon this upcoming Friday and we subsequently had to cancel our trip (apparently cancellation insurance could have came in handy!). I have been on hydrocortisone injections for 2 days and I have noticed a decrease in bloody stool and cramping but the diarhea is still occurring. I am a little worried that the diarrhea is still ongoing, but maybe this is normal?? Would really love some words of encouragement or advice right now. Thanks for creating this site.
I’m very sorry about your condition especially the timing and all. I actually had to delay my honeymoon myself which was tough but it all worked out in the end. I’m sure your partner totally understands too. As for encouragement, definitely realize that there’s alot of UC’ers who get with uc real hard and fast and furious, it doesn’t always creep up slow, but you’re gonna get through these times. The symptoms don’t last forever. There’s over 1000 stories on the site, and many of them offer great insights into different ways to handle and control colitis. Take care buddy, and hoping today’s a better days fir you
I am convinced i am having a flare but my bloods CRP and ESR are normal and my stool test is normal. I am having a sigmoid in a couple of weeks just to double check everything. I have stomach cramps, frequent loose movements 5-20 times a day. Blood and mucus in stool. You would think after having this disease for nearly 20 years i would know what a flare feels like but the gastro is saying its IBS and piles. Why are doctors so blood test led and not symptoms i am soo frustrated.
I am currenly experiencing my worst ever flare, I have been sufering for almost 10 weeks now, and was even hospitalised for 5 days on iv steroid. I am now on the dreaded oral/anal steroid, which give me horrendous side effects. I am puzzled as to why it does not appear to be getting any better. I am weak weary and very, very afraid. Is it normal to suffer this long, will it calm down eventually?
I am sorry things are so tuff for you at the moment, but its not uncommon for the symptoms to be going strong for a long amount of time. one thing that you might want to investigate is asking your doctors about getting a C-diff test. It’s a stool sample test which is pretty simple (all things considered). Reason I say this is when I was very severe several years ago, it just didn’t make sense as to why the high dose of steroids wasn’t doing anything for me, and sure enough I tested positive for C-diff, and once that was under control, I felt improvement pretty quick. It’s a shot in the dark, but worth mentioning to your doctors if you have not been tested for that yet.
i am glad there is a site like this, better than some others i have seen. I am currently in ‘remission’ but i hope not to jynx it! i am on Remicade and have been for just over a year. the year has been mostly positive as i gained weight back that i had lost due to a bad flare up (lost about 15 pounds but it looked like more since i was a thin guy). I am debating whether i should get off of Remicade and try natural ‘cures’ or ‘remedies’. Although i am grateful that the Remicade is working, i am also a little nervous of its black box label. its an immunosuppressant which apparently is like chemotherapy. i consider myself to be ‘almost’ chemical free in terms of food and eating very healthy, and yet i am pumping into my blood a bag of Remicade every other month. i have not yet checked out the site at all really, but would like to know how others have faired with no medication. can it be done with zero meds? thank you, Nick
For sure it can be done. You should read around, there’s over 1000 stories here. Many I’ve written myself and the majority of my time since my diagnosis has been medication free with mild or no symptoms at all. But no matter what you do, whatever works best for you and you’re comfortable with is probably the way to go.
I’m feeling fruserated to say the least. I’ve had UC for quite a few years now. Last year my colon ruptured and I lost alot of weight. Eating habits around the holidays got the best of me and I slacked off quite a bit. I lift weights regularly and jumped back on aclean high protien diet.I’ve been having extremely watery stools that have blood mixed in. I figures my cleaner diet would help but its seem to make it worse which causes me to stress. Any suggestions would be helpful. I’m currently on remicade. Thanks in advance
What works well for me is cutting all sugars and reducing stress on the body. maybe a few days/weeks of laying off the weights could allow your body to relax a bit.
I started the SCD diet 7 days ago 2 days into it my UC symptoms got worse more stomach pain then ever with mt UC, and bloody D, feeling very weak and some lightheadedness when getting up from sitting, is this from starting the diet and will it get better with time?
I`ve had ulcerative colitis for 14 years. I go long periods of time without any problems, but in the last few years it seems to be one flare up after another. I have tried a couple of things that seem to help. Aloe vera juice ( reasonably priced at Walmart) helps to make my insides feel calm- for lack of a better word. Also on a trip to Mexico, the locals introduced me to a tea made from leaves of the Neem tree. Does not make the flare up go away, but certainly eases the pain in my abdomen and the bleeding decreases. Neem leaves can be found in East Indian food stores in the spices section. Boil 10 leaves in 2 litres of water, cool, strain and drink a cup a day. Since the asacol does almost nothing to relieve my symtoms, I am happy to have other alternatives to make me feel better. These things don`t cost lot of money, and what will it hurt you to try them.
But…the Neem tea tastes very bad. I was told to drink as is,,,do not sweeten. Don`t forget to have regular colonoscopys as you are at a higher risk for cancer
I was diagnosed with ulcerative colitis in 2008 after my daughter was born. Stress is a huge factor is triggering flares! I decide to go to a homeopathic nutritionist and completely change my diet. And I take a few herbal supplements. I was on prednisone and alot of mezavant for about a 6 month period where I weaned myself off mess completely. Terrified I would have a huge flare up I did it anyway and I completely stuck to the diet the naturopath gave me. I am now at my 5 year appointment and have not been on drugs I. Almost 4 years !!! Diet is a huge huge factor!! No dairy no cofee a along with a few other foods I am sensitive to!!! Ulcerative colitis can be kept under control! Without drugs
Congrats Sandra for doing so well for so long. Great news and I hope you have many more years of success in the future!
I was diagnosed with UC 6 mths ago and have just been put onto 40mg of prednisolone two weeks ago with the intension of decreasing by 5mg weekly until coming off I absolutely hate taking the prednisolone and don’t want to continue with this type of treatment any longer, it worked for the first 10 days but I’m now starting to have symptoms again with all the side affects of the drug as well. How long did it take you to ween off the prednisolone ?. Does anyone know if I would have to ween off after such a short time of taking it.? I really would like to come off it and make the strict dietary changes and any other natural remedies anyone could suggest and see if that works first before taking the medications as a last resort but I am scared that I will flare badly without any medication.? This process is extremely scary and very confronting and I know everyone’s disease affects them differently but hearing that people can live a normal life with UC makes life a little more bearable in these times.
I forgot to ask exactly what herbal supplements do you take and do you find them affective.? Also what foods have you found were triggers and what have you cut out.? I have already cut out diary and am going to cut bread and grains as of tomorrow to see if that helps, I have been drinking decaf coffee but maybe I will just go to herbal tea instead. Any extra information you can give on what has worked for you would be muchly appreciated.
I have kept my UC in remission for 5 years on the SCD diet, but I had some major deaths in the family and a ton of stress, and now have one of the worst ones I’ve ever had. So bad, in fact that the diet is not working. I don’t have a GI in this area and have been waiting months to see one. I have some prednisone at home, and could take a small dose, and short course, but I’m worried about the consequences, especially since I have perioral dermatitis, and steroids make it worse. I have no clue what to do, and am terrified of going to the hospital in case they put me on high doses of crap I can’t heal from. But I’ve lost 20 pounds in the last 3 weeks, and I can’t eat or drink without having diarrhea 10 minutes later. Help!
I’m sorry to hear what’s going on with you right now. If I was you, I would make it a priority to travel to see a GI doctor so you can get some professional help and maybe some lab tests to make sure there isn’t something else going on. Also, feel free to read as many stories from the site as you like. There are many stories from others with UC (including many posts I’ve written) and you can get to the main list of them here on the site map page:
Keep your head up, although its hard to believe sometimes, flares just don’t last forever:)
Thanks for the support. I was having a very down day yesterday and your words really helped. I called my family doc and requested a specific GI that I researched and feel would be a good fit, and I had my family doc give me some prednisone. I’m trying a short course starting at 25mg to see if it works. I actually took it last night, as I was in severe pain and can’t take pain meds due to a damaged liver. I felt at least 50% better today. I think I won’t take it at night again though, as I hardly slept a wink! Family doc figures a 4 days, then taper, 4 days then taper method should help. Because I’m sticking so closely to the diet I’m hoping this will help jolt me back into my regular rhythm. I already feel much improved and have my appetite back a bit, so I hope this is going to work. It’s amazing how much it helps to hear from other people who suffer from this. If anyone would like a UC partner let me know. Thanks!
Best best best of luck to you. Good on you for searching out a GI. And for sure if you can take the pills well before sleep time…that should help you out.
I wish you the very best,
(way cool being able to have an Adam & Eve comment session:)
Just wanted to give a quick update, because I discovered something very important about my recent seemingly unbeatable flare. I have been med free for 5 years, and any time a flare came up I would quickly get it back under control with probiotics and strict adherence to the SCD diet. I could not figure out why it wasn’t working this time. I was depressed and terrified that maybe this was cancer and I spiralled quite a bit. However, I sucked it up and went back on a higher dose of prednisone, which helped a bit, but not as much as I hoped it would. I kept thinking “what is different this time, why can’t I control this?” and even began to doubt that I’d get out of this. Here’s where I had the epiphany. Because I’ve been feeling so awful and it was difficult to eat, I stopped taking my probiotic. This morning I felt better. I took one probiotic pill after breakfast and began to feel a little ill again. It occurred to me to check the ingredients and I discovered that the probiotic pills I have been cramming increasingly more of down my throat in an attempt to curb this flare have actually been making me worse because they contain FOS (fructo-oligosaccarides to the uninitiated). I can’t emphasize enough that if things aren’t working, take a closer look at what you’re putting in to your body. I have no doubt that once this last pill has cleared my system I will feel 100% better. I should mention that these were new pills for me, as where I lived previously I was unable to find a 50 billion live culture pill like this one, and so only took a 10 billion one. This sure explains a lot, and I feel such a sense of relief knowing that I should be able to come out of this once again. Sucks that I have to taper down from prednisone, but I know everyone can relate when I say that I’d rather be tapering down and getting better than be getting worse and not knowing why! Thanks again for all the support!
Hello, I just read your very helpful, inspiring story. In Oct 2012, I was diagnosed with pan colitis. It was very severe but with about 4 months of being on Pentasa 500mg 4 tabs twice daily, it literally disappeared. I have not had any issue with bowel movement until a week ago. This past year has been very stressful for me. Let’s just say, I carry everyone’s problems on my heart as well as my own. I’ve been having more frequent bowel movements and stomach cramping as well as when I wiped, I noticed a tiny bit of blood. I’m going to the doctor on Tuesday but am petrified it’s something else. I suffer from severe anxiety so I can’t help but think the worst. Any comments or advice would be much appreciated. Thank you.
Thanks for writing in, and by best advice would be to try to relax and realize that you’ve overcome so much since being diagnosed, and you will be able to overcome what you’re going through as well.
Keep us posted on how things go, and keep your head up.
Thank you so much!
I haven’t read all the responses here but just want to say that while relaxation is important generally I’m unsure as to whether it’s a major solution to a serious UC flare. And if one was a tad stressed prior to a flare…you can bet additional stress arrives with severe UC onset. Very hard to sleep or relax when when your body is being torn up burning from the inside.
I would not recommend delaying or ignoring contact with your Gastroenterologist. If s/he is too formalistic or rigid with treatment regimes – then find another with whom you can work. The best are open to alternative or complimentary treatments and ideas – but are also there to catch when really sick. People with severe UC disease should seek professional help immediately to avoid other very serious complications.
For me fresh vegetable juices (carrot and apple etc) twice a day are a big help. Also simple sprouted grain breads with no preservatives etc, rice and vegetables fish etc.
Medically proven that nicotine results in ~30% reduction in UC. One of the many references on this subject here: http://www.gastrohep.com/freespeech/freespeech.asp?id=56. That does not mean take up smoking – patches might assist. But not gum because it contains sorbitol. Apologies for being politically incorrect on this latter suggestion.
hi, my son is quite newly diagnosed with proctitis a form of colitis. We are both struggling with it but he is now on mezalazine but is having a bad flare right now.He works out in the gym, lifting weights and also takes protein shakes which im convinced triggered all this off!! what are your views on these shakes? thanks
I would steer clear of the protein shakes, especially if it is a big part of his diet. If he removed them and went to something else (i would go for more chicken breast meat as a substitue for protein), that might show him some positive changes.
Also, if it was me and if symptoms were active, I would stay away from the gym, or at least tone it way way down until the body is doing better.
Wishing you both the best,