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Stay Positive!!!

Brett H fIntro:

I am 38 years old & I was diagnosed in May 2014 with UC after suffering a severe attack which landed me in hospital for an extended period.

I had never heard of UC but have always had mild irritable bowel type symptoms which I though we’re just normal!
I was wrong 😱

Some more:

I am a father of 4 beautiful children ages 17,9,6 & a 6 months old 😊
I am engaged to my beautiful supportive partner who has been by my side through my whole UC journey!

I am a store manager of a liquor retail business for the last 14 years.

I love everything technical I play PlayStation & PC games in my spare time (this is my outlet and me time)

I spend most of my time at work or with my family or renovating my house etc.

I am a happy go lucky guy and get along with almost everyone I meet, I am a positive person who searches for the good in things, I try my hardest never to focus on negatives!

If my kids described me I’m the fun loving playful, stupid, embarrassing, cool dad depending on which child you ask LoL

If my mates described me they would say I’m the joker who is always the life of the party and no doubt would throw in some sarcastic comment/joke about me 😉

My best mate would tell you I am a top bloke who is always there when I am needed by anyone!

My partner well she could say anything lol but she would tell you I am supportive and a great father with a huge sense of humour who swears way to much!


My colitis symptoms vary depending on my attacks:
Ongoing symptoms are:
-Joint pain(hands,feet,knees,back)
-Inflammation as above
-Irritable bowel type issues(severe cramps, loose movements)
-Stomach ulcers
-Body hair loss(patchy)
In my full on attacks I have suffered so far:
-Extreme diarrhea 30+ times a day(resulting in no sleep for extended periods as I’m up more than every hr on loo)
-Stabbing pains in sternum
-Cramping like clockwork to the point I’m in writhing pain begging for it to stop!
-Severe dehydration
-Loss of appetite
-Hemorrhoids from going so often which is a lot of my pain after a few days/weeks at it
-Mood swings due to lack of sleep
On steroids
-Pimples everywhere especially on my face
-Oily skin
-Severe mood swings and just not feeling like I’m me
-Insomnia because my brain goes 100 mile n hour all night
-Increased appetite
-Weight gain(gut,face,back of neck)

Stay Positive

My story is as follows:

March 2014 I start having weird pains in tummy that don’t seem to go away like they normally would, I start having gastro like symptoms which progressively get worse over a week of doctors visits and a trip to emergency.

After a week I am now going 30+ times a day, I have blood & mucus and explosive gas and loads of pain!
Another few doctors visits and another trip to emergency later I’m on immodium etc. and trying anything the chemist will give me to try stop the flow, nothing helps! Doctors continue telling me I have gastro!!!!

So week 3 I’m still going 30+ times a day, I’m forcing myself to eat, I’m pumping Gatorade and Powerade into myself to stay hydrated, I have lost about 10kg I can’t work, I can’t sleep for longer than 30min without being up in writhing pain, I’m so dehydrated/malnourished I’m hallucinating of a night and feeling like I’m not going to make it through this, I’m feeling alone with no support not knowing what’s happening to me.

Week 4 I continue to deteriorate I drag myself into the car n drive to emergency for my 3rd visit begging them it’s not gastro and begging for help! My blood results come back and my inflammation markers are like 101 or something and I’m dehydrated/malnourished, I get sent to a specialist in the private sector who calls them back & says admit me now and informs me I’m not well don’t move you could literally die!

Ok we now have some attention, I’m admitted and I see my first gastro doc, He is amazing came in on his night off and explained to me I am gravely ill, He talked me through UC info and informs me I’m in the worst 1% of case he has ever seen upon admission and he can tell me I have it without doing a scope and to prepare myself for surgery as he is pretty sure he will have to take my colon as I am so far gone????

What???? I came in with gastro now I’m going to have a colestomy bag? I’m devastated, depressed n just want the pain to stop!

Doc gives me few days to respond to extreme steroid injections every 6 hrs or I’m losing my colon 😢😢
Apparently in my docs eyes I’m a miracle man, I respond to treatment inflammation markers start coming down, I’m on drip constantly, still going to loo a lot blood pus mucus you name it (nurses have to view every single poop n rate it poor things)

I have been in a secluded room as I’m being tested for all sorts of other problems and anyone that visits has to gown up, I feel lonely and I’m going nuts in this one room feeling like I’m a contagious virus.

I’m still a mess I’ve lost 15kg my muscles have wasted away to nothing, I’m forcing myself to eat even though I don’t want to as pain is still severe but improving.

I’m on endone, steroids, panadol & the odd sleeping pill here n there as I beg nurses for sleep.

Ok 4 days later I’m starting to feel better my inflammation markers are down to almost normal (5ish I think) I can finally come out of my room but I can’t get up I’m weak n brittle I try walk to the other end of the hospital but I am no chance. I’m holding so much fluid I’m like an 80year old man walking really slow sweating and sitting at every seat I can find to rest!

I call my state boss and tell him I’m stuffed and I don’t think I can ever return to work as normal and to book my LSL as I am not getting back anytime soon.

I continue to improve and get put on oral steroids for two days to be monitored before I can be sent home. By now I’m back in the positive mind frame thinking I’m on the mend I can beat this thing and I will!

I finally get out of hospital it feels so good I’m still down about my body I’m weak and have really been knocked about, I have literally withered away to nothing! I started at 78kg I’m now down to 60ish.

I return to work literally half the man I was 6-8 weeks ago, I start off 3hr shifts and work my way back into health!

I was trialed on sulfasalazine this made me gravely ill felt really sick, massive headaches so bad I could not sit up, I return to gastro doc he puts me on mesalazine, psyllium husk(Metamucil) and advises me to stay on good quality multi vitamin and see how we go.

I’m still on 50mg prednisone for two weeks also I then taper down 10mg a week till I reach 10mg, As I am still doing well I then come down 1mg per week until I’m off steroids all together WOooooooooo I’ve done it finally!!!!!

I continue to improve over coming weeks gaining strength back feeling more like me again, My gastro doc unfortunately moves but tells me I am one of his favourite case studies and I can call him anytime I need and again tells me I am a miracle man!

Ok so now we made it through my first ever illness that made me rethink everything I ever done in my life from smoking cigs when I was younger, drinking alcohol, diet etc etc. why did this happen to me??

I read a lot about UC and hey I’m now thinking wow I am really one of the lucky ones. I feel fully recovered with my same old Irratable bowel cramps and the odd bout of diarehea returning but hey this is nothing after what I’ve just been through!

Fast forward to mid 2015 I’m having 3 monthly visits with gastro doc and I can finally have a follow up colonoscopy IM IN FULL REMISSION yessss. I have plenty of existing scarring and damage due to my extreme attack but I’m on cloud 9 feeling invincible m, eating anything I want having the odd alcoholic drink again with my mates etc.

Nov 2015 pains return have another severe attack, I start with ongoing tummy pains progressing into 30+ bouts of diarehea daily again NOOOOO please noooo!!! Ok stay calm Brett you knew this day was coming, I know what I have this time we can do this stay positive!

Two sleepless days later I head back to emergency and this time confidently rock up and TELL them I have UC help me now before I get any worse! I need you to check my bloods please and I may need to go on prednisone to ease this attack!

The tests come back with slight inflammation, I have no blood in poop but lots of mucus and stools are very loose with explosive painful gas and cramps & plenty of pain, I get a script for prednisone 50mg and persevere for two more sleepless days. I’m still going to the extreme 30+ times a day getting drained and 5kg down in 5days.

I head back to emergency and beg them to call my gastro doc he advises them I’m going so much I may not be absorbing the oral prednisone so they give me a shot of steroids in the arm and tell me to return the next day.

It works and kick starts my recovery, I stay on 50mg for two weeks and my symptoms slowly get better till I sleep one day for like 12hrs straight!

Ok positive thoughts come at me I’m now tapering off prednisone sitting on 30mg at the moment feeling pretty good (except for the miracle drugs side effects of coarse but hey who cares if I look like a pimpley teenager after all of that?) fingers crossed I’m on the mend and I’m looking fioward to some more remission 👍🏻

I joined the Facebook page tonight and replied to a comment that I thought I could answer! I am always open to help others so feel free to contact me through Facebook if I can help in any way!

ENJOY LIFE when I was in hospital at my worst I was looking across the room thinking wow I’m bad but that guy over there is going through worse than me!!!

A positive mind will always help you on your journey! You will drop below the line, everyone will at some point, you need to go to someone and tell them! Ask for help! Talk about your condition!

I hope you enjoyed my story I apologise for my writing skills and grammar etc. this is the result of pc’s doing the work for me for the last 20 years lol.


I have traced back my initial attack to anti inflammatory nsdsaids (keep away from these they have the opposite effect on me)

Sulfasalazine did not agree with me at all.

Mesalazine has been great for me although it is costly I take two per day.

I take a good quality multivitamin daily.

I have continued taking Metamucil two a day as my doc told me it’s great for absorbing excess water.

I take inner health plus pro biotics.

I stay away from spicy foods they agrovate my bowels! I love hot spicy food and get tempted occasionally but always regret it when I wake at 2am in pain running to the loo!

I eat and drink what I want, I could not give up dairy if I tried, I eat a lot of bread, I am a chocolate addict ;) in short I don’t really think food is my aggrivator but can give me ibs type symptoms.

STRESS from my job and a few things going on in my life this year I believe had a lot to do with my current attack, I knew I was stressed and have since made a conscious effort to relax in times of high stress and I think it’s working :)

I openly talk about my condition to anyone it really helps! My staff know if I disappear I am more than likely in the loo! My partner has seen first hand the pain and suffering I go through and I could not stay so positive without her! (She also yells at me and tells me go to emergency when I’m stubborn and doing the ego man thing I’ll be right lol)

I tried taking chondroiten an glucosamine for my arthritic pains and seen a specialist for advice. The bottom line was anything he could try me on may trigger a UC attack so to put up with my niggling pain until it becomes a hindrance then we will try other avenues! And he told me the glucosamine etc is a gimmic and it works for some people because they think it’s working but the body can not absorb it correctly for it to help.

written by Brett

submitted in the colitis venting area

15 thoughts on “Stay Positive!!!”

  1. Wow, Bret, sounds like you were on a roller coaster. So you never had surgery? Did you ever have to take the immune supressants, like Remicaid or Imuran? I haven’t taken a Prednisone in a very long time but my GI doesn’t want to put me on it. He is set on Remicaid treatment, but I feel that is poison that I really want to avoid. I have an appt. in a couple of weeks and I should have been going for infusions for the last five months. He may just fire me as a patient–not kidding. I am leaning toward a more holistic/natural approach but the idea of giving up foods I love really sucks, especially since it’s only been a few years that I have enjoyed eating. I am paralyzed with these decisions and I know only I can make them.
    I am so happy that you’ve achieved remission and am hoping my day comes soon. I love your attitude of staying positive. The battle can be very waring on a person. Keep smiling! :).

    1. Hi Debrak,

      No surgery just yet, I am in hospital as we speak now facing the threat again though.
      I have not been on any immune suppressants as yet but if I can recover from this flare I think that will be added to my daily cocktail of drugs Imuran was mentioned today along with increasing my mesalazine to 4 per day from 2.
      I also love food in general and can tell you any attempts to change my diet would fail lol, Indeed we all face very real decisions that only we can decide on, So if you feel after doing research a diet change may help or whatever follow your heart! I trust my doc and follow his advise but I’m not shy and always ask questions and have input in my treatments.
      Thank you for the feedback and good luck in your journey!

      Stay positive and talk about it with people close to u, They always point me in the right direction with my decisions.

      1. Hi Brett! Wow, that is some story! I really feel for you not knowing at first that it was indeed UC that you have and how frustrating that the ED kept sending you away before doing all the tests! I was really lucky that I was diagnosed after just some minor symptoms of bleeding. You can read the rest of my story in the Colitis Venting Area (I 1st wrote about trying the SCD diet while in remission so that’s where you’ll find me on this site if you’re interested).

        I have to say I’m so impressed that you manage to stay so positive throughout your journey. UC is a horrible illness that is really difficult for other people to understand and I agree that it is SO important to talk about it to ANYONE that will listen. Yes, it’s an embarassing topic but at the end of the day, everyone shits (we just happen to do it more frequently, in pain and in a different style!)

        I was in the Wine Trade here in the UK for 15 years too, so I feel we have something in common. How are your employers treating you now? I hope they are supportive.
        Not sure if your doctors have discussed Infliximab (or Remicade) with you. During my worst flare it was the only thing that worked for me!
        I wish you all the best in your recovery from the latest flare. When I was in hospital there was someone in the bed opposite me who’d suffered a massive stroke and wasn’t much longer for this world. These experiences certainly help to keep things in perspective.

        Keep us updated and I wish you the best of luck! Lili x

    1. Hi Dean,

      I had a severe flare 2 years ago that couldn’t be controlled by steroids, either oral or IV. After 3 weeks in hospital the doctors finally gave me an infusion of Infliximab (Remicade in the US). It is administered over a 2 hour period through an intravenous drip. I then had 2 more infusions a week apart and it turned out to be my miracle cure which put me into remission (after 3 months of 20+trips to the loo per day at my worst). Luckily I suffered no major side effects, however, because it suppresses your immune system so heavily, you can get infections easily (I had to go on Antibiotics 3 times in 6 months thanks to throat infections).
      Unfortunately Infliximab is not licensed in the UK for Colitis as a maintenance drug, only an emergency remedy (plus it costs the NHS £5,000 for a 3 dose treatment). Instead I am now on a Chemo drug called Mercaptopurine (6MP), which has so far kept me in remission (fingers crossed it stays that way).
      I hope that helps x

  2. You may try meditation or relaxation therapy.Vipasana meditation helped me in remaining positive but had no effect on the course of colitic symptoms.I get attacks even when I am doing everything right,Perhaps we have to suffer relapses till more research finds some ‘cure’

  3. Thanks for all your replies guys,

    I am just posting an update for you all on my current situation SO I’m still in hospital making very slow progress in the right direction, I am having hydrocortisone injections 6 hourly, mesalazine x4 daily, I’m on vancomycin 4per day, flagyl 3per day! Bowel movements of approx 10 per day down from 30ish.
    In the next day or two I will most likely be trying my first infusion of remicade to try boost my recovery! I will also be intruduced to imuran ongoing along with my increased side of mesalazine!
    Fingers crossed I can avoid surgery for a bit longer and have some more remission, although I have mentally prepared myself to have the op, I feel I still have some time up my sleeve to try other avenues first and hope some new miracle cure becomes available in the near future
    The more I have researched I definitely attribute my flair to STRESS and if you read up about it stress triggers your immune system to boost for a fight or flight type situation when u are under stress!
    I’m still positive & I always will be, I’ve had few sooks n why me moments but then work my way through it, drag my butt out of bed go for a walk in the sun n think how lucky I am every single day, even if I feel 80yo n work a sweat in 10min n need to sit because my body has withered away and I’m holding fluid in my knees n legs.
    I’m pretty sure cdiff is pretty much gone but they holding off on imuran etc. just Incase, thx for all the love n support I have received after my initial post I have made a few fb friends around the world which has been lovely!
    Btw I’m an Australian I don’t think I mentioned that earlier, I live in Tasmania which is an island at the bottom of Aus and yes I love my bbq lol, I have numerous Aussie slang words I use on a regular basis

    Cheers guys n gals,
    I really appreciate the support.

  4. Imuran might be to keep the Remicade from building antibodies, which you definitely do not want to happen.
    Well you must be having some great weather down south! Even in central Florida it is cold right now.
    So what are they feeding you in the hospital? Are they suggesting anything specific for post hospital meals?
    So what do you BBQ? And what do you put on it? Got any good recipes you’d like to share?

  5. Hi Brett!

    I hope you are continuing to improve and feel a bit better in hospital. Pleased to hear your BM numbers have reduced. Hopefully the Remicade will work for you as well as it did for me.

    You mentioned feeling very very old, weary and holding fluid in your legs. That might be the Hydrocortisone injections. When I was getting that medication as regularly as you are now, I had to keep my legs elevated for a few days and nights as my ankles swelled up like balloons! I also took Paracetamol with codeine at the time which eased the pain a little. I know exactly what you’re going through right now. Hang on in there, it will get better. You are doing the right thing by getting up and moving about (I have to say, I am a teeny bit jealous that you get to go out in the lovely Tassie Sunshine at least… could be worse, imagine the British Climate this time of year!)

    During my recovery time after my stay in hospital and the magical Remicade, the aches and pains did last a while but it gradually got better in time. Unfortunately, myalgia is one of the common side effects of being on a prolonged course of steroids. I hope that doesn’t last too long for you. If you ever want to just vent and swear and have a “why me” moment, don’t beat yourself up about it, it’s completely natural, go for it! That’s what sites like this are for.

    I completely agree about the stress element btw… my first major flare came shortly after my mum was diagnosed with Cancer, the next after a difficult spell at work. I have been in remission for 2 years but have seen some very minor symptoms return in the last few months. It has not come as a surprise to me given that my partner and I are having relationship difficulties and I took on a higher pressure job just before Christmas! I’m considering a step down at work to try and reduce the stress and help my health…. but that’s another story!

    In the meantime, I really hope that you are able to avoid surgery. Keep up the positive spirit and remember you are not alone. Good luck! x

  6. Hi all,
    Finally after 14 days I’m out of hospital! I’m very beaten up but no surgery yet and my bm back to 4-5 a day and reducing further.
    Turns out I needed the full course of everything they could throw at me before my UC even wanted to begin to calm(it was extreme) my doc described it as my colon looked like the surface of the sun and had seen nothing like it before……me being me”well I guess the sun dies shine out some ppls ass” hahaha
    I’ve had two very close infusions of remicade 5 days apart (should be 14) which turned out to be my saviour so far! I will return fir another in 4 weeks.
    I am now on prednisone oral 40 tapering 5pw, 4xmesalazine, 1xmesalazine suppository(night) and am starting imuran gradually increasing to x3 over 3 months.
    I couldn’t really decipher which side effects are from what at the moment for you guys but here are the noticeable ones FYI in future.
    I have lost alot of muscle n strength, acne, moon face, bloating, uncontrollable shaking, fatigue(bad), unable to concentrate, sweats, lack of vision(focus), unable to urinate easily & worst of all fluid retention in my legs n feet n hands making me feel 90!
    I am in a very happy place right now after returning home after being away from my family and just have to cross my fingers n recover and hope we hit remission after I taper down from my concoction of potions n pills! Cdiff was all clear after two bouts of both antibiotics! Yay 1 down.
    Thank you for all your feedback n support and I have made some lovely fb friends in the meantime, if anyone would like to ask my opinions on any of the options I have tried feel free to request me and inbox me questions, I am happy to repay all the info I have received from others which helped in my decision making with the dr.
    REMEMBER STAY POSiTIVE if I lose my colon who cares in the end IM ALIVE and I had that option to fix my condition! After seeing others in hospital for 14 days and 1 patient next to me pass away HEY I’m lucky!!!! Nothing will ever keep me down for more than a few weeks at most
    Long road ahead but my attitude will bring me home, seeing my gorgeous girls smile this morning after being couped up in hospital in isolation room for 14 days puts it all in perspective! Let alone all the things we take for granted, it was surreal today, I could eat whatever I wanted, when I wanted? Shower when I wanted, I drove my car(I forgot I had one) hell I just sat there thinking wow its so quiet here in my house its so peaceful compared to the last 14 days! N omg my bed felt like a fluffy cloud!
    It’s a battle but I’ll hit it head on I just need to remember to pace myself and listen to my body!
    I’m so glad Adam created this site it has helped me so much and is a great resource for everyone an unbiased opinions of real people!
    Cheers from Australia guys live life to the fullest!

    1. Hey B,
      Way glad to hear you are returning home and on the rebound my friend!

      Thx for keeping us posted and wishing you a nice weekend back in a familiar place:))

      Take care and all the best to you,

  7. Hi Brett –

    I found we have some similarities in our illnesses after reading your post, and thought I should tell you a little about my experiences – in case they might help you as well. I too had a severe flare as my first flare, ultimately being hospitalized. I was diagnosed correctly before the hospital, but had to try out every drug on the planet from the lowest intensity on up to see what would work for me that was the least potent.

    Well, nothing worked. So, I ended up in the hospital – also having lost so much weight from my diet of jell-o and gatorade. I was finishing up my first year of law school and was just doing anything I could to get through the semester – so I couldn’t eat. I was also severely anemic – from losing so much blood each bowel movement. You didn’t mention blood loss, so maybe this is not something you experienced, but I think that is what ultimately landed me in the hospital. I ended up on 60 mg prednisone taper and starting Humira. Prednisone worked so fast – and I was out of the hospital in a couple of days. However, I did have all the nasty side effects of a long term high dose steroid treatment. Insomnia, mood swings, anxiety (terrible! I had begun my dream internship at a law firm that summer and was literally out of my mind!), and of course the weight gain/mood face. The worst of it though has been the long term joint pains in my knees. I have been taking chondroiten an glucosamine supplements – triple strength – whatever that means and it didn’t help for a long time… until it did. I think it takes a while, but my joint pains are nothing like they used to be. I think it’s worth trying, but give it a while to work. It can’t hurt you – and if it helps, totally worth it.

    I also reached remission – for about a year, with a few days here and there of a little blood/IBD symptoms. But, it did come back. Never as bad as the first time. I think you should consider some of the more potent medications if possible – I know they are crazy expensive and some have better insurance/prices than others. Also, I ALWAYS have leftover Prednisone on hand for flares. The sooner you start taking it with symptoms, the less severe the attack and the more quickly you can recover. You can also look into Uceris and cortisone enimas when you think a flare might be coming – less serious medicines that might nip it before it turns ugly. Just some thoughts, but of course what works for me may not work for you!

  8. Hi Brandi,

    3months later I’m still going well, On the hard stuff now having remicade infusions every 8 weeks and they started me on azathioprine but it gave me severe migraines so they switched me mercaptopurine and that concoction seems to be working for me so far with my 4 mesalazine daily :)
    I have weened off steroids 14kg heavier n feeling like a fat lard lol and omg my joints are killing me again since coming off roids.
    I also used to take glucosamine n chondroiten but my arthritis doc told me I was wasting my money so I stopped but may give it another go after your success.
    One thing I will mention is my gi doc also told me not to bother taking psyllium husk as he didn’t think it helped but I was still very loose for a prolonged period and I started taking 2 tabs a day n now I’m not loose anymore, still going 3-4 times a day but no pain,blood,mucus for last few months! Wooooo, now I need to knuckle back down n get my fat ass back to the gym to lose the extra kegs
    The only side effects I’m still having is I’m struggling to lose weight, joint pain, headaches, fatigue(random) and bloody pimples on my back! Other than that I’m kicking ass back at work full time smashing out pallet loads of stock

  9. Bret, have you tried Turmeric for joint pain and headaches? I take1000mg once a day after dinner….always with food. If you buy it, make sure it includes Curcumin and BioPerine. It is very good for any type of inflammation, great for joints, and an antioxidant. I take it once a day and got my husband to take it and his arthritis in his hands is almost completely gone! He discontinued two Rx meds he was on because Turmeric works better. I bought the brand Vimerson Health from Amazon. For myself and my Crohn’s, I also take L-Glutamine tabs once or twice a day, and 50 billion probiotic a couple times a week only–because I don’t want to get SIBO. I also take Rx drugs of course, but these supplements have def helped. I have had loose BMs for so long that when I go normally, it almost kills me! Lol. Still hoping to go into remission one day–hoping to avoid biologics. I need to change my diet but honestly, not enough willpower, or time to figure out all the info I read online. Best of luck and health to you…

  10. Hi Brett,

    Not sure if you have come across it but I posted about joint pain and Extra Virgin Olive Oil a few years ago. I started using it for UC with great results and later discovered that it was also responsible for ending my long standing lower back pain. I am an obsessive about EVOO because the more I researched it the greater the benefits to health were. In the last few years some arthritis sites have picked it up and endorse it so well worth a try. It is a powerful yet very safe anti inflammatory and some even claim a weight loss benefit so you shouldn’t gain any more fat. It is afterall a very good fat indeed. You need the good stuff though. More details can be found by searching on this site for EVOO and or pain relief.

    Good luck!

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