What is up everyone my name is Joe and I was diagnosed back in 2012. Since being diagnosed I went through multiple treatments which I ended up having server colitis and had to have my entire large intestine removed.
Some more about me:
Video games, comics, Dr. Who (FANATIC), Science Fiction, Sports (Football fanatic), Exercising (counting the days till I am able to do so).
U.S. Veteran served 4 years in the Navy a man aware of many bathroom facilities.
No “J” but an “S” Pouch
So I was diagnosed with Ulcerative Colitis back in October 2012 even before then I have always had ‘butt’ issues my whole life. Basically I am known as the guy who can go to the bathroom anywhere at anytime. So right before I finally decided to see the Doctor I was having crazy issues with pooping and yes pooping as you all know is an understatement. Again as stated by so many other people the pain I was going through was way to much to handle. Flare-ups were happening non-stop no matter what I was eating, it even started to affect my work. The GI DR I was seeing put me on canasta and prednisone at first. Neither was helping and my flare-ups started to get worse so she then signed me up for remicade treatments. The remicade treatments helped out immensely which each time I went I felt like I was on an episode of Breaking Bad. You have a recliner with an ivy for the infusions definitely a weird feeling. By then I lost 25 lbs of weight (185 to 160) which can easily be noticed but nothing to severe. Well the first 3 treatments were completed which happened every 3 weeks or as stated my first stage of treatments were done. Now I can start doing these treatments every 6-8 weeks which I was happy about since now I can start coming off of predisone.
My last or 3rd remicade treatment ended right before Christmas which worked out perfect since now I feel like I can celebrate the holidays. During Christmas I had my first few alcoholic drinks since being diagnosed and ate a real meal for once without blowing the toilet up. Well then came New Years where my wife and I went to our friends New Years Eve party. Needless to say I had some drinks, started with a few beers then moved on to whiskey on the rocks. Kept eating some appetizers while drinking and the next thing you know my stomach started to growl a bit. All of a sudden I felt like a flare was happening while sitting on a couch. I did not want to move at the time for I was afraid once I did BAM my ass would have exploded. My blood pressure started rising so I knew I had to try and make a break for it to the bathroom. Thank goodness everybody was already tipsy and the new year already happened. Finally I saw a break and I took off to the nearest bathroom, one guy was in front of me so I politely pushed him to the side and said I was sorry but I gotta go. Not one second later after opening the bathroom door the BAM started to happen. I barely made it to the toilet yet most of it landed on my pants and let plus the rim of the toilet seat. Well can you say embarrassed slightly yes, my face was blaring red and I was in instant panic aka gotta clean this up and get out mode. I tried to text/call my wife about 30 times which I already knew she was pretty much drunk socializing with her friends. After an hour of cleaning and putting together an escaped plan I decided to stuff toilet paper in my pants and make a break for the door. Instantly I walked out the bathroom walked quickly to the door with my wife yelling hey babe come here and say goodbye to Elena, I instantly turned around and said one minute have to run out to the car. I’ll stop now but lets just say it took me another 45 minutes to FINALLY get my wife to answer her phone and meet me outside while I sat in the car smelling like poop.
So after that long story that is how I knew the flare-ups are back and in full affect. Took a while to get a hold of my GI DR for she was on vacation. The assistant started me back with remicade treatments which took forever for some reason. During this time of pain & agony the wife and I had a cruise planned for our 9th anniversary on Feb 11th. Called the GI again who was not available and decided to contact my main DR. He supplied me with more prednisone & canasta for the cruise which was already booked & paid for. Let me just add I ended up knowing where EVERY bathroom on the boat was. After we gotten back in Orlando my flare-ups were still in full affect. Next thing you know our lay-over to fly back to St. Louis had a 6 hour delay yes I said SIX HOUR DELAY. You can all imagine with having flare-ups during your whole vacation then sitting in the airport for six hours waiting to fly home was absolutely horrific. When we did get back I called the GI DR again which once again she was on a vacation. By now I was fed up and the pain was so bad I ended up going to the emergency room. In the ER I was tested for seadiff which ended up coming back positive. By now they re-hydrated me with some fluids and I finally had an appointment setup with my GI DR. The first time the DR saw me she almost started crying. I looked like a zombie by then I was weighing 125lbs a total loss of 60lbs. Finally she decided to admit me to the hospital and believe it or not asked if I want to go now or wait till tomorrow.
Obviously my wife took me to the hospital that day. My main DR was there as well as my GI DR assistant apparently she was busy doing something else. After being checked out it appeared my UC went to being severe. The colitis spread throughout my whole colon and was explained to me it looked like a blood puss sponge. I instantly said take it out even though my wife was asking is it possible to save it. Well the colon ended up being taken out and the instant I woke up I felt a HUGE difference. The surgeon already explained to me the 3 step process it’s going to take in order to create a J-Pouch. At that time I did not care just get this freaking thing out of my body. After the first surgery I ended up going back to work a week later. Was it too early possibly although it didn’t matter cause I was then later on laid off due to cut backs. To be honest that worked out for the best cause after the second surgery which was the more so major part of creating the p ouch etc really kicked my a**. For starters the 4 hour surgery ended up being 8 due to the portion of my torso. Instead of having a ‘J’ pouch I ended up with an ‘S’ pouch. Then the piece I had for the bag was wrong I ended up needing a convex. By the time I learned that it was too late and the skin was so burned I was laid up for over a week. Finally 8 miserable weeks go by and I had my 3rd and FINAL surgery. Also during my preparation for the 3rd surgery I ended up landing a job at Boeing talk about things finally looking up after having a horrific year.
Just to add this is my second and hopefully last major surgery. I had an erupted brain aneurysm when I was 29 (9 years ago). That alone had me in the hospital/rehab for 6 months still I do not remember much of the pain from that. What I do know and remember is the pain of UC and that is something I wish on no one.
written by Joe Barrow
submitted in the colitis venting area