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 😱
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:
-Inflammation as above
-Irritable bowel type issues(severe cramps, loose movements)
-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!
-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
-Pimples everywhere especially on my face
-Severe mood swings and just not feeling like I’m me
-Insomnia because my brain goes 100 mile n hour all night
-Weight gain(gut,face,back of neck)
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