What Do I Do, I Was Just Diagnosed with Colitis?

Meet Justin:

My name is Justin from new Mexico. I’m 26 and was diagnosed with moderate uc two weeks ago along with a hernia in my esophagus. I was real into bodybuilding and fitness and have always had a fairly healthy diet. But now I’m a little lost with all of this news._

Justin’s Symptoms:

Currently I have few symptoms, I believe the prednisone is doing its job although I hate it with a passion. I’m down to one bathroom visit in the afternoon and one first thing in the morning. The pain has almost left me but sometimes in the middle of the night it hurts.
Justin from New Mexico

I was Diagnosed 2 weeks ago
with ulcerative colitis.
Thanks for reading my story.

Justin’s Story:

It all started about 2 months ago when I started noticing a little blood after using the restroom. A combination of no health insurance and being a knucklehead led me to do nothing about it. About a month of bloody bathroom time passed then about 3 and a half weeks ago after eating out at a restaurant I got a pretty nasty belly ache. Next day the pain was still there and I started have pure liquid bowl movements with a lot of blood. I still didn’t bother to see a doctor or anything just kept working and going to the gym. But after a couple days of pain and lots of potty breaks I noticed my weight was dropping pretty rapidly. After two weeks of increasing pain and bleeding I started to get very week and could not do my job, almost passed out climbing up a ladder and fell a few times. Finally I went to the er. I was 171 pounds before the symptoms started and at the emergency room I weighed 150. They admitted me immediately and I spent a week in the hospital. After the colonoscopy they diagnosed me with “moderate ulcerative colitis” and started me on prednisone 40mg and mesalamine.

After I got out of the hospital I was 135 pounds and pure bone.

It has now been 7 days and I am back to work and feeling somewhat decent. With the help of prednisone I’ve gained about 6 pounds back all in the gut (which looks weird on a skinny skeleton body) still pretty weak and get tired easy but everyday is better then the one before it. I am still in shock as this all happened so fast, any feedback would be much much appreciated. I have questions like will I have to be on steroids for ever? Will I flare up as soon as I’m off them? Will I ever be able to eat a steak again? And I know recovery is most important but will I ever be able to live my previous life of weight lifting and bodybuilding?

Where I’d Like to be in 1 year:

I’d like to be able to not have “where is the nearest bathroom ” always on my mind. And I would like to be able to bulk up enough to compete as a bodybuilder in the light weight class.
inflamed colon

Justin’s Colonoscopy pictures of his colon

Justin’s Medications:
Started on 40mg prednisone with a 5mg taper every two weeks. It seems to be helping but the side effects are horrible. Night sweats, fat gains, joint pain and depression. Also on mesalsmine, vitamin b12, omeprazole, and probiotics

written by Justin

submitted in the colitis venting area

28 thoughts on “What Do I Do, I Was Just Diagnosed with Colitis?”

  1. Justin! I just had colon surgery about one back, May 22 to be exact. I was on tons of prednisone, remicade, and asacol, all of which seemed to mask the problem. I’m not saying you need surgery, but for me i was off an on prednisone for about 2 years, only to get better then taper off prednisone, and start flaring again. Just be careful with all the drugs, I have at times, have really sore knees bc of all the prednisone. If you start flaring don’t wait so long, I waited so long one time, they said if I had waited to much longer I might not have made it. Good Luck with everything. Feel free to let me know if you have and questions. Will be happy to help however I can!

    1. Hey Joseph! I appreciate the feedback! I’m sorry you had to get surgery to get better, the doctor’s have mentioned the possibility of surgery as well. That is my biggest concern like you said tapering off the meds only to flare back up. I am also having issues with the knee pain and I’ve only been on prednisone a few weeks, pretty scary. So in your surgery did they remove the entire colon? And as for waiting to get help if I flare again, I just completed my 90 day probation period at work and now am covered for health insurance (timing sucks it would have been nice to have insurance before the hospital visit haha). Thanks again for the feedback and look forward to hearing from ya!

      1. Yeah they took the whole thing out. They tried laproscopic but ended up having a 6 inch incision. My colon had been damaged for a couple years though. Hey, feel free to email me, joseph.critcher@gmail.com. Trust me there is a lot of comfort in support from others. I’m more than happy to help however i can! Really think about surgery, its a permanent cure and you never have to worry about UC again. I will be glad to tell you all about it!

  2. Justin,

    So sorry you are in this active phase of UC. Here is some good news for you,though. With effective meds, rest, and time you will go into remission. That means you will be able to regain your strength and activity level.I have had UC for thirty years,and have been in the active phase of UC four times. This last time my UC was active for two years.I went from walking two miles a day at a 14 minute mile pace to barely being able to walk 8 miles in an entire month due to pain,fatigue and inability to walk without having bouts of diarrhea. After two years I am now walking regularly again at my former pace. I also picked up the weights again to rebuild muscle.It feels great! Best wishes to you. There is hope!

    1. Hello Debby! Its great to hear that you are doing well and that there is hope of returning to full functionality! That has been one of the hardest things for me to deal with, how fast this can knock you on your ass and steal your strength and energy right out from underneath you. It is getting better I’m able to work full days and have started working out again. I am taking it easy I don’t want to overdo it. The only thing I worry about is as soon as I’m off the meds it will attack again.

  3. Hey Justin, it sounds like the prednisone is giving you some immediate relief! Congrats on that! Also, if flares continue in the future, your doctor may prescribe something else for you to take besides the prednisone so that you aren’t on steroids forever and consistently needing higher dosages.

    Also, my first flare was the worst, partly because I had no idea what was going on at the time and was an even bigger knucklehead than you were. I was 19 and went 6 months with blood in my stools before doing anything about it! I started reading a Mayo Clinic book to try to figure out what in the heck was going on in my insides. I had narrowed it down to an IBS or ulcerative colitis. I wasn’t able to see a specialist for another 4 months, and one sigmoidoscopy later, I found out I had UC. My first perscription was Lialda, which basically did nothing, then it turned out my health insurance wouldn’t cover it and it was $400+ for a months perscription. After telling my doctor that it wasn’t doing anything, and I can not afford it, we started a prednisone taper IT WAS AMAZING! I experienced an immediate change! By the end of the taper I was totally fine, and remained in remission for 9 months, until I made myself a bowl of spicy chili…

    Since then, I have been in and out of remission for the last 4 years, trying to control my diet, and doing whatever I can to avoid having to take medication for this illness. I’ve done prednisone tapers a number of times during that time, none of which have had the results of that first one. All in all, it sounds like you are headed towards remission! I think if you watch what you eat, and take care to avoid antibiotics, you can keep it that way!

    1. Hey Alyson! Thanks for the input! I think chili is gonna be my Achilles heel I love spicy stuff. Its gonna be hard to not eat it again. How long do your remission periods usually last? I’m definitely hoping that first flare will be the worst, definitely won’t wait so long to get help next time.

  4. Hi Justin,
    I have been off the pred for about 2 months, and I was worried it would return full force the day after my last pill, but it didnt. I wouldnt say that im feeling as good as I did while on the pred, but for anything less than the pre diagnosis symptoms Im not complaining! And you should be able to eat most normal things such as chilli but not all the time, but who knows, it might not cause you any problems
    Good luck with everything!

    1. Hello Megan, that gives me some hope hearing that you were okay after the prednisone stopped. I’m down to 30mg a day now and drop to 25 next Friday. I feel semi normal now the symptoms are nearly gone I just hope it stays that way. Like you said as long as its not as bad as the pre diagnosis symptoms and I won’t complain!

  5. Whats up Justin,
    I myself was an avid gym rat before I was diagnosed with UC. I had the exact same symptoms as you man. I recall being at the gym once and going to the bathroom and it was so bloody, I was so scared, but thought this cant be happening to me and it must just be hemorriods or something because I was lifting hard, 6 days a week. I kept lifting until it got so bad. I have lost alot of weight too man since being diagnosed, but I dont lift anymore, I do miss it, but its a goal for the future. Where you taking any supplements? Like protein, pre-workout etc… I swear NO-Xplode started my symptoms. I remember drinking a protein shake and then taking a dump right away, that milk and whey doesnt go good with UC. It got a bit worse, than I had my wisdom teeth extracted and was on pain killers, then all hell broke lose.
    I switched up my diet since being diagnosed and I know it helps! Check out SCD diet, I hope to hear from you son bro.
    Johnny Drama

    1. Johnnydrama its good to hear from you man, I’m sorry to hear your troubles. I was taking a bunch of supps, weight gainer, protien, creatine, and a pre-workout called super pump. But when the pain and constant crapping started I would hit the bathroom within 10 minutes of drinking a protien shake. It definitely sucks spending all those years trying to add muscle then its gone in a matter of weeks. I’ve actually started to work out again (well I should say attempted to start) I’ve done 3 weight lifting workouts this week but they have been real short and with super light weight. I got some lactose free protien powder and mix it with water or lactaid milk. So far haven’t had any gut issues. I’m still on prednisone so I know any attempts at muscle gains are pretty much in vain but oh well. Are you currently taking any meds for the uc?

  6. Justin,
    Crazy shit man, that super pump made me get horrible gas and I think it was it that initally started the symptoms, I would switch between pre-workouts each time because my friends and I had all differnt kinds, so one day it would be jacked or NO-xplode, super pump, N5, etc… prob pretty stupid for switching off and on, but it was all pretty much the same shit, its pretty much tons of caffeine jacked with tons of shit we dont even know, topped off with creatine, I honestly feel like a complete idiot for using that stuff. The crazy thing I googled super pump bloody poop when I was taking it and it was common, and the dude at GNC called it SUPER Dump, so this shit must have something in it that gives anyone gas,frequent bowel movements. Check out my story https://ihaveuc.com/you-cant-spell-sucks-with-out-uc/
    I’m following the SCD diet right now and taking 3 lialda per day. I think you should be careful with the weights until your off the pred, because thats hard on the bones man. Plus I would avoid any type of protein man, that has so many unknow ingredients its not even funny.
    Take it easy bro

    1. You ain’t kidding bro all that pre workout stuff is poison I won’t touch it again. I checked your story out its crazy how similar it is to mine. I was under a ton of stress as well plus all the “proprietary blends” in all those supplements that who knows what the hell is really in them. I’m reading a lot about the scd diet but haven’t started it yet. Im actually not really having much symptoms now just get mild cramping from certain foods like salad. I’m sure the prednisone is masking the symptoms tho. I’ve read a lot about the bone and muscle weakening effects of the prednisone as well so I’m taking it super easy just body weight exercises and really light weight curls. I may be jumping the gun though I’ve only been out of the hospital for two weeks. What do you think about like boost and ensure to get some extra protein? But yeah I know you can relate how much it sucks looking in the mirror and seeing all that was lost. I know main focus is healing and recovery and I shouldn’t even think about working out but its rough

  7. Im guessing the ensure and boost are going to be a little more known, compared to all the Gym workout products(none are FDA approved and their are no studies on long term/side affects of all that stuff)
    Obviously ensure or boost wont have such crazy ingredients and creatine, but I still think they have alot of things that just arent the best for people like us with UC. Everyones body is differnt man, it couuld work for some dude, then the other guy may be shittin blood within 20 minutes. Being you just diagnosed I would switch my diet right away and get healed up, we are lucky to have a site like this to get all these tips and secrets the docs dont tell us man, If I was diagnosed a few years back I wouldnt of had a chance to talk to hundreds of people and learn pointers about UC and diet etc… So I would say we are kind of fourtane in this day in age, hell their wasnt even internet like 15 years ago haha.
    Man when I first stopped lifiting I couldnt stand it. I got really big man, I was curling 50 pound dumbells, maxing out on all the machines and had killer abs, I was know at the gym, and the crazy thing is like a year and half before I could hardly curl a 10 pound dumbbell. I got pretty jacked man, I had some good times, but I though about the long run man, lifting is always going to be their.
    From that picture you look like you know your way around the gym, I bet you been dedicated and it sucks we were dealt with thesse cards we call UC, but life throws curve balls man, we just gotta know how to handle them. Yeah I lost all my gains, but my health is way more important then being at the gym with a bunch of dudes trying to show off to each other haha. I honestly have times where I want to go to the gym and let some stress out, but right now Im trying to get my life back to normal and get everything healed up. The SCD diet isnt bad man, I eat tons of eggs(cheap protein) Lots of lean chicken breast,good veggies, plenty of tasty fruits, juicty burgers and fish man, Its all natural and I can feel the difference. Putting in all of that protein shit I just knew my body didnt like it. I recall having stomach aches and stuff. Eating healthy can be costly, but their is no price on our health.
    Best of luck man. Hope you get of that pred soon and start healing up bro. I dont know if the diet will cure the disease, but man its working great. I just hate taking pills man, the though of taking pills my entire life doesnt go well with me, thats not my style. I think taking a pill for everything is cheating, I feel you gotta fight the inital problem not just mask it.
    Good luck bro, hit me up on here anytime you need to talk,
    Johnny Drama

    1. Definitely good advice I appreciate it. I think I will start that scd diet when I get my next paycheck. Ive been eating mostly scrambled eggs and chicken breast and turkey sandwiches, I know gotta cut out the bread. I gotta figure some things I can bring to lunch at work. I work construction so I don’t have a microwave. I’m definitely in the same boat as you man I don’t like needing to take pills just to feel normal. Hopefully after I’m off the meds I can control it with diet. Really appreciate all the advice and I will definitely keep in touch

  8. Hey Justin,

    Sorry you are going through this initial period of the flare up. I’ve been diagnosed for a little bit over a year and a half now and I’m still waiting for a remission period. Diet is a big change for sure! Sadly all the foods I used to enjoy are on my no go list. Prednisone is hard on the body, mine freaked out when they put me on it and it didn’t help my uc at all. I’m on azathioprine right now and it’s helping but not fully yet. It’s all trial and error for each person since our bodies react so differently. Im actually looking into taking time off from work just so I can give my body time to heal. I work in a salon and after each client it feels like I’ve run a mile. I hope things get better for you soon and you can get back to feeling like yourself again!

    1. The new diet is a drag! Haha all my favorite foods are on the can’t have list as well. I’m sorry you’ve had to deal with this so long with no remission period. Hopefully you get some relief soon. I was also considering some time off of work. It seems like over the weekend when I rest everything gets better then by Tuesday or Wednesday I get burnt out.

  9. I am in the same boat with you justin! No insurance…. and newly diagnosed. Just know you are not alone, pretty sure we all would agree this site makes us a little more at ease in talking to others just like us on diet, meds, and everything in between. Everyone is different though…. some things work for others and some dont. I will say diet is a big part…. (still currently working out what works for me).

    For me, In april when diagnosed I got started just on sulfazine and bentyl. I had flares 2-3 times a week. Went to a new GI doc may 31st and he put me on 40mg of prednisone that tapped every two weeks. After 9 days of 40mg, I had what I call my mental break! I had every single severe side effect to the meds besides the hives, convulsions, throat swelling. My fam doc had also put me on cymbalta for the anxiety/stress of the disease and effects of the steroids (even tho cymbalta is an anti-depressant). I ended up in the ER, cause I thought either I was having heart attack or it was all the side effects of the meds. Wasnt my heart. I got to tapper after talkin to GI doc next day to 30mg…. that put me in a flare. GI doc wanted me to stay on 30mg until I was supposed to tapper at 25 which would be july the 12th. I actually tapped today to 25 (even though today I was just now supposed to be at 30mg)30mg of pred for over a month period seems to be a bit much! In the mean time, I was still having bad anxiety issues….. fam doc decided we would try celexa since cymbalta and me didnt get along. The celexa is like the “sister” of cymbalta. Only after 4 days of celexa another mental break came and this time with worse side effects than the cymbalta… had my bp to 170/105! I could literally count my pulse by just watching my wrist. Off of the celexa now and got put on buspar (anxiety med)….. I am feeling more like me again. I too wonder if I can go without flares when I am off the prednisone.

    Glad to hear you have put some weight back on…. I on the other hand am still losing weight rapidly.
    Just try and have patience with this…. I know it is hard, and I have to remind myself to do the same all the time. You are not alone, hang in there!

    1. Hey Jessica, I too am playing the trial and error game with the diet. I think I am getting a pretty good hold on it. Like you said though everyone is different so some of the stuff people say will help gives me problems. But I am putting weight back on pretty quickly. I’m on 30 mg of prednisone now and am supposed to cut to 25 in a couple days. The side effects are insane though! Just recently I started getting really bad hand cramps where my hand will freeze in a awkward position. I was on celexa before and it jacked my blood pressure through the roof. I think venting on this site and talking to everyone is keeping my anxiety in check. I’m sorry to hear your symptoms and that your still losing weight, I hope it gets better soon. Do you take any probiotics or anything like that?

  10. Mate,
    You will honestly be able to do anything you want. UC comes as a shock at first but it won’t stop you succeeding.

    1. Thanks man good to hear. I’m definitely still in the shock phase but its starting to sink in and become part of life slowly but surley. Everything was going great, but yesterday the symptoms came back but I’m pretty sure it was a diet issue. I got a little over zealous and ate something I shouldn’t have. I appreciate your input and look forward to reading future posts and picking up more knowledge about all of this. Take care buddy and thanks again

  11. Hey Justin, sorry to hear about everything that has happened. I was diagnosed about 4 years ago and have had a flare up for the last year. (Bleeding, constantly bleeding.) I’ve been on the SCD for 7 months and I’m just now seeing the bleeding go away. My diet consists of protein, some veggies and most fruits. Bread, starches (potatoes, corn), sugar (soda, sugar of any kind) and dairy are all gone from my diet. (Honey is the only sweetener that works for me.) Even though I’m bleeding, the cramping and diarrhea are pretty much gone, as long as I don’t deviate from that diet. Elaine Gottschall is one of the modern ‘founders’ of the SCD. Breaking the Vicious Cycle is a great read if you get a chance. Unfortunately, everything is trial and error. From a bodybuilding perspective on supplements, wait until the flare up is gone before trying supplements. The stomach needs to be full of healthy bacteria before it can process supplements again. (N.O., L-arginine, beta-alanine, etc) I’ve been using supplements from NOW Sports. Most of there supplements are all natural. I had excessive bleeding at first when I used beta-alinine, but using it sparingly is okay. Well, good luck and be patient, this doesn’t get better over night!

  12. Hey!
    Happy to hear the prednisone,is working.I hope you can get off it soon though. The side effects are terrible!!! What time of the day are you taking the prednisone at? Side effects can be reduced if you adjust when you take your dose.
    Best things to do, is stay positive, hang out with family and friends. Listen to your body!Take a break,from your everyday routine. Get a lot of rest , your body will thank you for it. I see you are takin b12 ,thats good. Should help with the energy boosting. But sleep is wonderful,it will help your body heal. Any questions,ask me,and I will help.
    Have fun and live each day to the fullest!

  13. Hi Justin,

    I rarely come on here now however after reading your post I thought it would be good to give you a heads up on what I’ve done to get back on track after my diagnosis.

    In Summer 2011 I was a frequent gym goer and football (soccer) player for a local team, probably in the best condition I’d been in my life at the time. Then in Oct/Nov 2011 was diagnosed with UC, and quickly went from 170lb to 140lb. I was put on mesalazine & prednisolone as a result, which as you know is great at stopping UC, but horrible in all other respects.

    I was very weak after this, but built my strenght up by eating highly calorific foods, which I’ll be honest was great to do. Whilst I did not stick to a very healthy diet I did keep my protein intake high, with a view to getting back to training as quickly as possible.

    I started training again with walks and body weight exercises, then after a month or so started going back into the gym, doing all over body routines so I didn’t overwork one body part. This was also the best option for building muscle mass again.

    Once my UC was under control I began tapering off the pred, which all I can say is that you need to do slowly, as I had another flare as a result of coming off this too quickly. When you are on pred, you can feel great at times and eat what you want, but as you start your taper, you need to hold back on any strenuous exercise, make sure you keep hvaing rest days and most importantly of all – Be strict with your diet.

    Your adrenal glands will need to get used to working properly now that you are coming off the pred, and any overworking of your body, whether it be from eating big meals, or exercising too much, will set you back. I tried to follow the paleo diet as much as possible, and would difinitely recommend it to you. (google paleo diet for athletes, which is basically a paleo diet but with complex carbs after training to help you grow)

    It took me 3 months to taper off preds properly, and would drop 5mg every week or two. Its no plain sailing. You will feel tired as your body adjusts to life without it, but it can be done.

    Now I train at the gym 4/5 times a week (apart from an achilles tendon tear keeping me out at present – which I have been told is a result of the UC med azothioprine which I am now on)
    I have put on circa 20lb, am not in as good a shape as I used to be but I’m getting there. The best weight training to do when coming off pred is to stick to no more than 10 reps per set, and make sure you rest for that little bit extra between sets, (90 seconds or so) this stops you body from being stressed. Also I’d avoid any supersets at first.

    I would suggest that whilst you are on preds, relax your diet and begin to eat highly calorific foods in lots of small meals spaced out. Its unlikely you will flare up again whilst on pred and you need to put some weight on and build your strength. However when you begin to come off them, make sure you watch your diet, don’t do too much – at work or in the gym (I would actually take a step back with trianing at this stage, only doing maybe 35-45 minute workouts as oppose to an hour or so), and listen to your body – if you feel tired, rest, if you feel hungry, eat, if you get that dodgy rumble in your stomach, think about what you’ve eaten that could have caused it. Remember, its a marathon not a sprint!
    Hope this helps, good luck!

  14. Hey Justin,

    How you doing?

    Was wondering how all is going for you and what’s the latest with you ad bodybuilding?

    Is that something you’re still into?

    HOpe you’re well bud,


  15. I’m 17 years old and was just diagnosed with UC about a month ago. I stumbled across this website while desperately looking for solutions and tips on gaining some weight back and lifting with this god awful illness. It’s nice to know there are other people out there going through the same thing! I was surprised when I was told I have UC because I’m pretty young and it just totally demotivated me to workout. I had been lifting all last summer and put on about 18 pounds. I weighed 165 and I dropped down to 142 thanks to UC. I’m currently in a pretty hellish flare up, and I’ve been on a pretty bland diet for the last few weeks. Hoping to heal this up, and possibly go into remission before summer so I can get back in the gym. I’ve got my last high school football season waiting for me next year, and I plan on kicking some ass! I’m not giving up yet. Best of luck to all of you, any tips or
    pointers will be much appreciated! And Adam I’ve been making one of your shakes every morning and it’s awesome man!! Thanks!

    1. What up James,
      Hey, thanks for joining the site, and best of luck right back to you with everything. One tip/pointer, is respect your body. Try to listen to it, and don’t push things as much as you might usually. What I mean is give your insides some time to heal and get back to normal before hitting the gym too hard(if at all.) I think in general people would agree that by taking it easy on the physical workouts when symptoms are present is a good idea. In long run, it usually allows you to get back in the gym faster with better long term results.
      With that said, I hope you reach all your dreams, and I’m sure you will.
      Take care,

  16. Hey Adam! Thanks for the feedback. I’ve been on a very strict diet and it’s paying off. I’m currently tapering off the prednisone, now taking 30mg a day with lialda. My diet basically consists of eggs, chicken, rice, colliflower, and spinach. I’ve introduced a couple things back like deer venison and turkey. Still laying off sugars and sweets. Took your advice and layed off the workouts and focused on healing. My health is my main concern and I want to be feeling 100% when I get back in the gym. I’m down to about 1 or 2 stools a day, as oppose to the 20 I was having about 5 weeks ago. I know prednisone is probably masking most of my symptoms but I was wondering when it would be best to get back in the gym? I’m feeling great but I’ve heard prednisone and lifting don’t mix well. Should I wait till I’m completely tapered off? Anybody’s feedback is appreciated!
    Your fellow pooper,

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.