Hey all, it’s Curtis. I haven’t posted an update in a while so I figured I would share how things are going with me since my last update.
I only had Ulcerative Colitis for about 2 months but I can confidently say that I am 100000x happier now than I ever was with UC.
I have ZERO pain, am taking ZERO medications and have freedom to do and pretty much eat whatever I want without having to worry about where the bathroom is!
I know there are a lot of you who are happy in remission and changing your diet and taking medications so if that makes you happy, then that’s great, but if you aren’t happy and surgery is more and more becoming an option, I can personally say that it changed my life for the best. I know I have said this before but if I could go back in time and have the option to have the medications work or have the surgery, I would still do the surgery with the knowledge that I have now.
I went to Disneyland last week with my friends and I had no issues whatsoever and it felt incredible! I gave myself 3 goals at the beginning of this year when this all started and I wanted to complete them by December. I made these goals to let myself know when I am fully healthy again and they were: 1. To be able to play soccer 2. To be able to surf 3. To be able to go to Disneyland. I can now check #3 off that list, and in the next couple of weeks will be able to cross of the other 2. My incision is ALMOST fully healed, it’s taken a lot longer than I expected but oh well. I have started working out slowly to get myself in shape for soccer so I at least have some base fitness instead of going into it cold. ANYWHO, I feel awesome, now I just need to find a job! If anyone has any ideas or connections for a job down here in beautiful San Diego I would be open for suggestions! haha.
I hope everyone is finding something that works for them, and also I hope that anyone who is thinking about surgery knows that it isn’t the end of the world at all, you just have to put life on hold for a couple months, but in my opinion it is TOTALLY worth it!
Vitamin C and a Multi Vitamin…BOOM
Submitted by Curtis in the Colitis Venting Area
Curtis is a young guy who developed a very rapid case of severe ulcerative colitis symptoms in early 2011. Shortly afterwards as when medications were failing to solve his problems, he had only one option left which was surgery, and he is hanging in there and doing great. Curtis is an expert soccer player and has his own line of T-Shirts he creates too.
No I’m all done. My surgery was done in 3 steps and my last one was September 21. I’m bag free, UC free and colon free. Haha
Hey Curtis. I’m so happy for you! My son (13) had his reversal in July but still frequently has to go to the bathroom. Currently he takes 4 Imodium in the morning and 4 at night before bed. Yet, he still gets up overnight 1-3 times. Are you eating anything specific to combat the frequent bathroom trips? Throughout the day he may go anywhere from 6-10 times. No pain, no blood.. but we definitely can’t be unaware of where the bathroom is, where ever we go. Any tips?
I’m not doing anything specific with my diet really at all and that sucks that he’s still going so much even while taking all of that Immodium. I don’t take Immodium unless I know I’m going to be out for a long time like or to go surf or play soccer. I took 2 before I left for Disneyland and didn’t go to the bathroom until about 9 pm that night so I guess everyone is different, then I take 1 before I go surfing and stuff like that, but for the most part I don’t take any. I wake up maybe 2 times a night and go anywhere from 4-8 times a day when I don’t take anything (which I’m fine with). I like to eat everything and haven’t really found anything that makes me feel really bad or go a lot more yet so who knows! I hope it gets better!
Thanks Curtis for the good words on your surgery. I’m getting closer and closer to just saying F it, take my colon. I’m in such pain, been dealing with a massive flare since June, just got my first Remicade infusion two nights ago in the hospital and boy, it’s like it’s gotten worse. I consider myselft to be pretty damn tough, but this craps got me begging for mercy. I feel awful for my wife and 2 year old son having to deal with me. Doctor wants me to bump up Prednisone again to 60mg’s, but I’m a little weary cause I’ve been on it so long and I started tapering off and actually started improving till they took some biopsies of my colon and that just made things worse. It’s like it stirred a bees nest. I think I’m actually shitting out tiny bits of colon at this point. I know I need to give Remicade some time to work it’s magic, wish there was a fast forward button to this part of my life. I’m glad to hear someone with such positive results after getting your colon removed cause that sounds pretty wonderful right now. Anyway, best of luck getting back to soccer. I want to get back in the gym and start putting back on all the strength I’ve lost and can’t wait for that. I wish the treatment for UC was with some real anabolic steroids instead of this shitty Prednisone. Atleast that would give us some good results with our bodies instead of getting all the horrible side effects of steroid abuse and none of the muscle, haha. Take care Buddy!
Hi Curtis! So great to read that it can turn out good! I’m doing my last surgery(knock on wood) tomorrow where i’m getting rid of the bag and to read this as last thing before going to bed really calms me down hehe. Thanks for good read and good luck to you in the future man!
Hey bro, I have been trying to figure out how to get in touch with you. My name is Jonathan just turned 25 live in SD and I have the same surgeon (Ramamoorthy) and had the same G.I. as you (Sandborne). It would be cool to exchange stories as well as maybe get some advice as to what I should expect going into these next two ops. I had my first on OCtober 4th. Next will be with the robot. Glad you are doing great man! Have you picked up surfing again yet?
Awesome to hear!!! Congrats =)
Dude just read your story in its entirety and wow man that was some experience you went through. I hope that nothing but good news comes from you in your updates in the following years. Congrats bro!
Your story is such an ispiration. Your outlook is amazing. I was diagnosed in 2006 and have been on remicade for a little over a year. My GI says it is working on my colon but it seems to be making my joints worse. It is nothing compared to your story. My son also has UC he is 21 and had a bad flare while first year in college. He seems to be doing well on Asacol. I am interested in hearing about your soccer shirts. I love soccer! I hope you keep feeling well.
hey Curtis i just had my colon removed late November and i would love to play football again because this season i was too sick to play. I’m only 17 and i really would like to play my senior year but right now i have lost all of my strength after surgery and i get worn out doing the easiest thing. you said you have been running and want to play soccer. did your energy come back after your last surgery or did it just take a long time to work at it to get your strength and energy back? also since i have had my bag i have lost 30 pounds witch is a lot of my strength i think. I know every body is different but i was wondering if any of this has happened to you?
I’m getting very close to getting the surgery…nothing is working for me, on remicade and it’s doing nothing…i feel horrible and can barely get out of the house. only 29 and i can’t function at all. any words of wisdom about the surgery or things i should ask the dr? hoping that if i get it i will be back to “normal” or at least back to functioning!
Hello to another UC’er in Sunny Southern CAli… Loved your story!!! I was only diagnosed in August so this journey is so new to me. Mine includes my entire colon and seems to be stubborn on 60mg of Prednisone and that is barely making a dent … Your story has given me great hope. AS a busy mom with 2 young girls I too feel like just saying F”it take that crappy thing out… Glad to hear you are feeling so well. Gives this 39 year old new UC’er hope!!!!
Enjoy your new found freedom my friend!!!
Thanks so much for sharing….
Thanks so much to Curtis and all of you who have posted comments on his post. I learned SO much!!! I consider myself a UC veteran diagnosed Nov 2008 while in grad school and was about 26 years old, started with the same gammit of meds that all of you have tried including lialda, asacol, enemas, humera, remicade, 6mp (lately even up to 80mg prednisone status post hospitalization. Also diets including SCD and gluten free…needless to say all those extremes were no match for the severity if my UC within the last 6 months. Incidentally, in all this time that has gone by I really only enjoyed 1 1/2 of remission. The rest of the time was spent trying to control symptoms with meds and diet.
I recently went to Dr Sandborne at UCSD and followed up for a surgical consult with Dr Ramamoorthy. Dr Sandborne gave me the option of trying new meds; however said my best option is removal of entire colon. I just want to thank you Curtis bc on the long drive home, my wife conducted a search about jpouch surgical outcomes and when she read your post I said this is the obvious answer! I am sick of being a slave to this disease! All the medication that i had to take hopefully have not damaged my body so far and I want to continue with a healthy body for the future. I am ready to move on with my life with my loving wife, take vacations, enjoy restaurants, take a walk with the dogs, hit the gym…..at least this is what I pray for. I will post my story during my downtime and will update my recovery bc I know it will help others like Curtis and all of you did for me! Can’t say this enough, thank you!!!
Any update on your surgery?