First surgery: Colectomy
October 7, 2008This video detailing my first surgery because of ulcerative colitis. But I’m not out of the water yet! More surgeries and trials to come. Surgery is the only known “cure” for ulcerative colitis.
Keep fighting,
~Dennis
Question: How did your colectomy surgery go? If you haven’t had a colectomy yet, what are your concerns about having the surgery? Reply below!
Dennis,
we put up a post about your site on our blog..hope that is cool with you?
Megan & Mark
ucstory.wordpress.com
Hi Dennis,
Its good to view your video blog especially as I am currently trying to decide whether or not to undergo surgery, my story mirrors yours pretty much spot on, currently the disease is not to bad not to good and its in the back of my mind whether or not im opting for surgery to early, but then again I have had the disease for 13 years so have done well I suppose! I also tried Infliximab and and currenlty injecting with Humira and also use methotrexate, but that seems to have stopped working. The only difference I have is that they dont know for sure whether I have Chrons or UC, which could mean that I dont have the option of having the J Pouch!
Do you feel surgery was the right move for you?
Any way, good to hear it went well! Now for the rest of the videos!
Thanks
Stuart
Hi Stuart,
It’s a tough position you are in. In my case, surgery definitely was the right move. It has improved my quality of life dramatically and the issues I have now pale in comparison to the issues I had with UC. Surgery isn’t a perfect solution, as I say in many of my videos, but it was the better option for me. In a way, I didn’t have too much of a choice about surgery, since I had tried lots of medicine to little effect. I suppose I could’ve held out awhile longer but at the time of life it was the best move.
Check out http://www.jpouch.net I can’t remember which blogger, but one of them had surgery and the doctors thought she had colitis, but after surgery, they realized she had Crohn’s.
Also, send an email to Nadia, my co-contributor. She had surgery, and they knew she had Crohn’s colitis. She still takes medicine for her Crohn’s right now. In her case, surgery was necessary because her colon was basically destroyed. So surgery isn’t out of the question if you have Crohn’s disease, but in the case of Crohn’s disease it’s often done out of necessity to give you some temporary relief, since as you probably know, Crohn’s can appear elsewhere even if you cut out the diseased section.
If you have any questions, shoot me an email at Dennis@UCVlog.com
Take care,
Dennis
Hello Dennis. I first viewed your video on your takedown surgery days one-three. I was first diagnosed with UC three months prior to my HS Graduation in March 1993 at the age of 17. My problems began February 28,1993; I noticed blood in my underwear and I didn’t think anything about it; thought perhaps it was female related. However, as I was about to find out, this was something other than female problems or bleeding from that. As the next week passed, the bleeding continued worsening, and I noticed that I was losing weight very rapidly. After the third week, I noticed that I had lost nearly 40 pounds, and the rectal bleeding was becoming very heavy. I found myself in the bathroom 20 to 25 times a day, and one Saturday I was at my best friends house visiting, and she noticed that I was in and out of the bathroom a whole lot and she asked me what was going on. I told her that I was bleeding heavily from my rectum, and I made her promise me that she wouldn’t say anything to my parents. She did anyhow, and when they questioned me about it, I told them that the massive bleeding was from my front and not my bottom. When I got home, the bleeding continued, and within a few hours, the sheet I was laying on was covered in blood. By this time,I was so terrified. I finally made an appt to visit my family doctor within the next few days. She asked me about it too, and I told her there was no bleeding anywhere; only diarrhea, and gave me a diagnosis of gastroenteritis, told me I was dehydrated, and gave me a bag of IV fluids. I went back to school 2 or 3 days later and I wasn’t able to finish out my day there back because the abdominal pain worsened and I began throwing up blood and the massive rectal bleeding continued. By that point, I was so weak that I was unable to sit up straight. My mom’s friend came and got me and called my mom and told her how sick I really was. A few days later, a massive blizzard struck Douglasville, GA where I lived, (which is 30 min west of Atlanta,GA); we were buried under at least 2 feet of snow and a huge pine tree fell on my house and destroyed our living room, or den. I was getting worse and worse, and at this point, I was unable to walk on my own. I had lost copious amounts of blood, and I looked like a walking skeleton and pale as a ghost. Anyways after several blood transfusions, oral medications, like prednisone, and other 5-ASA’s and many tests, I was diagnosed with Ulcerative Colitis. 3 weeks after my HS graduation, I was hospitalized for my total proctocolectomy with an ileostomy. My surgeon told my mom how bad I was; he said that my colon pratically fell apart in his hands it was so bad. Over the next year, I continued regaining all lost weight, and ended up undergoing the 2nd surgery, which I’m sure you know from personal experience, was my ileoanal J-pouch surgery. I knew immediately that surgery wasn’t working because I was in and out of the hospital 3 times post-op up until August 29th; the diagnoses was pouchitis, or inflammation of the pouch; I was treated several different occasions with antibiotics, which failed to control the infection in the j-pouch. I had suspected all along that I had Crohn’s Disease instead of UC but all pathology reports done from my 1st surgery returned 90% positive Ulcerative Colitis. Then, on August 31st, 1994, I underwent my 3rd major abdominal operation to remove the jpouch plus 18 inches of inflammed ileum(small intestine); a permanent ileostomy was created and I am still living with it. My 1st surgery was done June 30,1993; my second, (J-Pouch) June 17th, 1994, and my 3rd, August 31st, 1994(8 weeks or 2 months between my 2nd and 3rd) I was 18 for my first surgery, and 19 my last two surgeries. My hope was that I would have my j-pouch surgery( I had a temporary ileostomy, a loop ileostomy was created(2 stomal openings); look like my docs would’ve picked up on the Crohn’s Diagnosis after my 2nd surgery was done. I was hoping to have my J-pouch takedown surgery done, like you, and go on to live a normal life with a j-pouch. Unfortunately, my rectum was inflammed, and when the j-pouch was hooked to the rectum, the inflammation spread up into the internal pouch and back into my terminal ileum, small intestine. I was so devatated. I think you’re such a brave guy; how old was you when you was originally diagnosed with UC and how about your 2nd and 3rd surgery? The takedown surgery, how old was you, and where is your hometown? My surgeries were done at Northside Hospital in Atlanta Georgia. I was on TPN after my 1st surgery; I weighed 87 or 88 pounds when I fell ill, down from 142 pounds. People thought I was anorexic, but I wasn’t; it was the Ulcerative Colitis, then Crohn’s; they told me Crohn’s Colitis, like Nadia. I viewed her blogs on the website, and she was sicker than I ever was. I still suffer from small bowel obstructions occasionally, and from painful flare ups from the CD. The surgeries didn’t cure me because there is no cure for Crohn’s like there is Ulcerative Colitis. Before my 1st surgery, I had no choice because it was either that, or I died, like Nadia said. My doc told me that if I’d waited a week longer to have that first surgery, I’d have died with Toxic Megacolon or peritonitis. I’m also missing my gallbladder, and I’ve had that removed because it became inflammed from the Crohn’s, and I’ve had attacks of acute pancreatitis and some elevated liver enzyme levels. Your blogs have been a wonderful inspiration to me, and Nadia’s as well. My name’s Carla Head, and I currently live in North Carolina, but my home state is Georgia, and I’m orginally from Marietta,GA, and I spent over 25 years in Douglasville, GA(30 min W of Atlanta). Thanks for posting this website; I’m still navigating it, so please let me know or feel free to email me with any additional questions. I’d love to hear from you,Dennis. You are very amazing! You’ve done a great thing by putting the word out about this website; I was wondering if you are active in the Crohn’s and Colitis Foundation, and have you done any fundraisers? I’m currently 35 years old, and I’ve lived with Crohn’s for 17 years, March of this year, March 13th. Take Care, and Best of Health to you. Hope you are doing well,Dennis. I hope we can become friends. Let me know if there’s any way I can help others who suffer from Crohn’s or Colitis. Love, Crohnie, Carla A. Head
hey just found your site I am very glad that you guys decided to make this site and the videos. I just had my large intestine removed at the end of may. My experince with the pain was very different. I had my surgery done at ucsd. I had it done laproscopic as well though my colon ruptured while they were trying to remove it and i had to have another incision about 5 inches directly through my belly button. Also when i woke up i was in the worst pain of my life. They basiclly could not control it. I had a button where i could get pain meds when i pushed it that wasent working. I had a epideral placed didnt work. i had lido in the top portions of the abdomen i dont think it went deep enough so that failed as well. For about 2-3 days i was in the worst pain i have ever been in. It was so bad and uncontrolled that i wanted to be placed in a coma until it went away. It was a very hard time in my life it made me realize why dr kavorkin (assit sucicide for chronic pain sufforage)…was so important. I felt very unprepared for the pain that i would experince as the drs did not mention that it would hurt that bad. I dont know if maybe the rupture during surgery made it that much worse. Also something different you mentioned that you only had to stay in the hospital for a feew days afterwards. I was in the hospital for a lil over 2 wks afterwards and had to go back a for a few days becuase of a blockage. I wish my surgery was as painless as yours. Im not a month out and still have pain. I cannot take a full deep breath in nor can i yawn or stand up stright. I dont know if i have abcesses or what but it still hurts. I have very sharp pains that shoot through my abdomen. I just want to know why i am having so much pain with a sugery that others seeminly dont have much pain. but thank you again for putting this site up..gives me confort that there is help with my ileostomy.
Hey there, Lindsay! Read your post earlier; It broke my heart to see how much pain this surgery has caused you. I can recall my first surgery and the pain I felt afterwards; however, the pain I felt preop was a nightmare; I was on no pain meds at all, and I had never known anything stronger than regular Tylenol;in other words, I had no idea how many available pain meds there were and the fact that I could’ve been comfortable my entire three months prior to my total colectomy. I, unfortunately, didn’t have the luxury of choosing between open conventional surgery and laporaoscopy. If I could’ve chosen, I’d have chosen the surgery you had because the open convential colectomy was horrific, I mean pain wise. I too, like you, had a PCA pain pump w/ morphine where I could push a button when the pain became too untolerable and I also had a central IV line where I was fed TPN intravenously for nearly two weeks while I was hospitalized post operatively because I was so malnourished going into surgery. I weighed about 85 pounds prior to surgery and my surgeon told me that if I’d have waited another week to have had this surgery, then my colon would’ve ruptured and poisoned my entire bloodstream and my life would’ve been in great danger, and I could’ve even died, so that’s how severely ill I was. I was only 18 years old, and the surgery was done 3 days after I celebrated my 18th B-day; I wasn’t able to have a “real” celebration with cake, ice cream, and any other food because I was hardly able to eat. What was even worse, I celebrated my 19th B-day in the hospital and I had just had my J-Pouch procedure done, just as Dennis had done, but unfortunately mine failed and it had to be reverted back to a conventional permanent ileostomy 8 weeks after my j-pouch procedure; I was so devastated because my diagnosis was also changed from being 90% positive that it was Ulcerative Colitis to being Crohn’s, where there is no cure, and I even suffer with flares today, at least one every year. Have your doctors considered placing a pain pump under your skin where pain meds are continuously circulating in your system? That would be something worth checking out; anything would be better than being in pain. I know exactly what you’re feeling, hon. Keep your chin up, and if you feel like you ever need someone to talk to, feel free to e-mail me sometime. My name is Carla, and my e-mail address is: carlahead@ymail.com. Good Luck to you, and I pray that your luck will get much better. Take Care Now, Carla