Introduction:
I’m thirty-three years old, I fight fires in Chicago, and I’ve got ulcerative colitis.
My Colitis Symptoms:
Abd pain, recal pain, blood here and there not very often
Hello my friends, I am sorry we have all been dealt this shitty hand.
Back in 2010 I had diarrhea for 30 days in a row and thought it was probably food poisoning. Went to Dr and was sent for stool culture that turned up negative so a week later was scheduled for colonoscopy. I was awake for it just sedatated and was able to see the inflamed colon on the tv screen. After a meet with Dr when he finished I was given Lialda, Canasa and was under the asumption it would clear up in a few weeks I would be back to normal.
After all what the hell was UC anyway?
I was still stoned from the Versed maybe a little denial too.
We just bought a bigger house because my wife was pregnant with twins and we already had a 3 y/o daughter. The next 11 months was complete hell, I went through a bunch of different medications you all know the story, none were working. My wife delivered a boy and a girl and they were brought home on Halloween. My wife was bed ridden and I was my mom, a one man show with 20 trips to the toilet a day.
I’m sorry to say the twins had a few of their feedings
while I was on the toilet :(
I was back to work after 3 weeks off with the babies, work was stressful to say the least. I’m a firefighter/paramedic and I was always worrying about the calls coming in and the fear of crapping my pants. The alarm would go off and I would run to the toilet, release the blood and mucus quick cleanup and jump on the truck or ambulance.
One time I had to climb a ladder
to chop a hole in a roof at a house fire
and I crapped the first swing of the axe.
My life went from great to grim in a very short time I was devastated, the fear of not being able to support my family was all I thought about and still do. After multiple more trips to the Dr I was told I’m out of options and we talked about surgery a little. I decided to get a new Doctor. She was stunned my old GI was out of options. She read my records and saw I had quit s moking 1.5 years before my diagnosis and told me to start up nicotine. It sucked to hear I was proud to be a nonsmoker. I got over it, I would try anything. I stayed on the Lialda x4 and Nicorette but then started Smoking again, after 6 weeks the blood stopped. After 7 weeks a solid poop it was hard to believe! It wasn’t all symptom free I was nauseous and belly pain but that went away eventually. I went almost a year without a flare! Had one in Feb 2012 when I stopped the Lialda for 5 days. Today I am doing decent I do the e-cig and Lialda x2. I still have bad days here and there, and I still am deathly afraid of surgery because I fear I my loose my job. Anyway It took some nerve to post this it’s not my proudest moments. I’ve been reading this website so many times with all your stories and wanted to give one back.
Adam’s the man, we’ve talked several times and his book(Feeling Crappy to Feeling Happy)
was great for me.
was great for me.One last thing I didn’t give every detail or medication but some of the stuff I tried Lialda, Imuran, prednisone, Canasa, steroid enema, probiotics, FMT, SCD . If you have any question please ask. Thank you
written by Firefighter Matt
submitted in the Colitis Venting Area
33 y/o male from Chicago married father of 3.
Diagnosed Feb 2010 Ran an 8K the following month against Dr recommendation, probably would not do that again UC sucks!!
Wow Matt, Thanks so much for your story. Those fears are so real for all of us, finances and managing kids and career. Its frigg’n scary. I’m so happy you’ve found some remission with it and I hope things stay that way. Its hard to go through all that, you sure did take a hit with the timing. So sorry you had to face that much all at once and for all the pressure you still feel having to keep it together. You can tho, and you will. Thanks for inspiring my day! Best wishes, Alice from Ottawa
Thanks for sharing your story Matt
It’s weird that something that’s supposed to be so bad for us can actually work as medicine in the form of cigarettes. I quit 3 (several short)long times, last one for good over 2 1/2 years ago, and got a bad flare every time. Remicade put me in remission once after 6 months in a flare and after I started smoking again. It didn’t help, the smoking I mean, the Remicade helped. I wished I hadn’t started the cigs again. The last time I quit I was having chest pains so had to quit but I got through the flare. Nicorette is, in my opinion, a better option than smoking, I know spoken like a true ex-smoker! Best of luck to you.
Thanks for sharing your story Matt.
My 23 Y.O. daughter was just discharged from the Hosp. It was her 4th admit and also her 4th transfusion in 6 years. She has tried asacol,VSL 3, pentasa, lialda and finally got relief with prednisone and entacort (all PO). — Untill this last flair. Her doc was talking remicade so we got a second opinion. The new doc wants to start over with the asa drugs via rectum this time. I was researching options and saw Helminthic therapy – purposeful introduction of worms (hook or whipworms)into the GI tract. My daughter said no way! – no how!
I also saw FMT and am curious about your experience with that. Was it home administerd? how was the FM prepared? and any other details you might want to share.
Don’t mean to be overly personal but yours is the 1st time I have seen someone mention trying it.
Thanks, Dan
Hey Dan, email me if you want I can give you more FMT info. I have Dr Borodys at home protocol and Sky Curtis’s
Mhacke7@Aol.com
Hey Matt! I feel your pain! I know exactly how you feel, dude. I am an active type of guy, but worry everytime I leave the house. Am I going to crap my pants and if so, will there be people around. Currently, I too am on Lialda, Casana along with Imuran. Right now, the Doc says I’m not in a flare, but the IBD portion of it is rearing its ugly head. I really believe that half of this disease is the mental portion of it. Trying to get that bad boy under control feels like its just as hard as the physical part.
Great story by the way. Keep coming back on keep posting!
James
Hi Matt,
Thank you so much for sharing your story and i too can feel your pain with being afraid (i also have a lot of anxiety of not making it to the bathroom and my anxiety goes very high when i start to feel a gas attack coming :-( ). Even though i work in an office, when i am sitting in meetings and i start to feel that “tummy ache” coming, i have to get up and walk out. Everyone at work knows i am in a very bad flare up, so thank God they are very understanding when i just get up and walk out.
This morning alone, the last time i counted… it was 7xs. it seems that morning are the worse for me. i dont know if others have the same problem in the morning, by the time i am ready to go to work, i am already EXHAUSTED! its such a frustrating illness that will never go away :-(
Yesterday I ordered Adams books and I am keeping the Faith that they will help me. I am trying so hard not to go on steroids. I was on them many many years ago and didn’t like them just like everyone else who goes on them.
I will also admit i am a smoker too…. its gross and i really don’t want to do it, and maybe once i get this flare up under control i will try the patch.
Thanks again for sharing your story with all of us on the site, and keep us posted on how you are doing.
Joanne
Joanne
Thanks for sharing Matt, I am a career firefighter as well who shares the same fears you do. Firefighting is my life and my passion which is why I take a large load of drugs to keep going and like you after my first diagnoses what like what the heck is UC? Thanks for sharing.
I’ve had to start wearing depends at work , what’s crazy is when I have on the diaper I never have to go , it’s such a mind game ,before I hot on medication , I have been on calls and shit in barrels , in back of engine into towels , I’m like a shit ninja , everywhere I go I scan for a good place to run and shit ,worst part now is getting up in middle if night , I stay dressed ,shoes on so I can run to toilet while other guys are getting dressed for the call , sometimes though I won’t feel like u got to go until I’m up for a few minutes and by that time we are walking into the call , it sucks , I also quit the butts exactly 2 years prior , I switched to snus , I thought maybe the juices from the chew were causing my issues but I think it’s from quitting the smoking , something in the smoke prevents flare ups, anyway it’s nice to have company and people who get what your going through, the guys at work don’t get it .
How have you been doing with the UC? Reach out if you want to talk
I’m meeting with surgeons currently tired off the fight
Matt