Officially starting step one towards j pouch on Monday!!!

I was diagnosed with very severe UC on March 7th 2017. IT is now June 16th and I amd going into surgery on Monday for the first step of the J pouch procedure. I could NOT go on living the way I have been living any longer (its not living). So while I am a nervous wreck about getting put under at the dentist office I am READY to go under for a major life changing surgery. So while I am excited about it I am hoping for all the strength in the world to relieve the anxiety of my fears.

I am a 25 year old man and plan to live out an amazing life so I am hoping this is the step in the right direction. THe plan is for a 3 step procedure to make sure everything is ok. Now If I was married already and settled down I may opt to stick with the bag. But I will give the the j pouch a shot since I am so young and wanna live my life as normal as someone like us can be. SOOO idk why exactly I posted probably just to get this off my chest. ANy feedback or opinions would be appreciated

Good luck!

I had surgery and it was the best decision for me. I knew that I would likely end up needing surgery at some point down the line, so I figured, might as well be now. I exhausted just about all the treatment options that were feasible for me. I do not regret not trying more stuff. I go more often now, but UC and drugs are the last thing on my mind these days. Life is much easier and more enjoyable without drugs, doctors and huge medical expenses. All of that gave me anxiety. I am glossing over the seriousness of surgery, but I want to be supportive. I can tell you, the stats show the vast majority of people have a good experience and only regret not having had it sooner. To be honest, I never thought I would be a person who would regret holding off, but I am. If I could go back and live my 30s without a colon, or struggling with UC, there is no way I'd choose UC. I am stupid for giving up all that time. It would be different if it were controlled and I was living well between flares, but it wasn't really the case. I was sick, on various meds, struggling to stay stable, emotionally and physically drained... Not worth it.

Good luck to you!!!

Please report back after. I know you said you're not married, and you're young, this is the best thing you can do for the future from my experience. If you do get married and have kids, you will be able to be with them and not have UC in the forefront of your existence. It's going to be fantastic. You take the good and the bad, but the good is so much better than the bad.

Ive been dealing with this for 4 years now and I dont think ive ever been fully in remission I can honestly say that Im starting to consider the surgery just to have my life back. I do have a wife and a child to provide for and this disease just puts so much stress on everything. Im so drained and tired of dealing with the 10-15 bm's a day with pain and being at 120lbs. My only concern is that isnt it possible for the colitis to return again in the j pouch?

Thank you so much everyone for your kind and positive responses. I will be documenting my experience so starting as of yesterday so I will give you little updates as things go on. Even as a reference for future UC people searching for experiences.

Electricain: Well technically bc its an autoimmune disease idk if we ever really literally get rid of it haha. But the problem unlike chrons is only in the colon. So once thats gone UC and it's symptoms are gone. Only issues from here on out come from the j pouch but think of it as permanent remission from UC...WITHOUT MEDS!!!!

Wow, you're back quickly. You seem to be doing amazingly well. On my first day, I don't think I was able to do much at all, a move to the chair from the bed is a huge achievement!!! Very happy to hear you're in such good spirits. it sounds like such a long time between the steps, but the time flies. Before you know it you will be reporting back about life with a jpouch.

Thanks guys! After the hell I've been thru the bag isn't the worst thing in the world I may wait till after Xmas to go for step 2. I wanna have a few months to enjoy myself, my family, and of.course the holiday food 😎

They are giving me aa mg of diladud eevery 3 hours. It takes the edge away but between the joint pain and newly fresh surgery I think it reasonable. Im a very uneasy guy with muscle pain Im not used to it. Always injuerd bones haha

I don't think an epidural is common. I didn't have one. Actually that shot in the spine sounds like it would be worse than just about everything else I went through. The only worse thing was the drain i had after step 1. I have nerve blockers in my abdomen. I had some pain, but nothing too severe. I was able to go home after 3 days, but I stayed a bit longer simply because I wanted the help.

Also how long till you were able to get out and socialize or go shopping. I ned new clothes since I lost so much weight haha. I do plan on eating ALOT of stuff in moderation that Ive missed out on

Hey guys just want to stop by and give a quick update on my surgery in case anyone is wondering if they should get it done and wants to know others experiences. I got out of surgery on Monday afternoon with pretty bad pain. More so its where it is thats the problem since you need to use your abdomin o move around. Second day sontinued to be rough but with help from the pain meds I ws able to get up. First from bed to chair , next day chair to halllway and now I am at the point of going for a walk every 3 hours if possible.
I am sheduled diladud 1mg every 3 hours so I came up with a plan. Instead of taking it before i move I decided to get up walk and then take it after. This way I know how I am really doing and how much is masked by the diladud. And then when I get back whatever aches and pains I feel go away. I can not believe how far I ve come since Monday. I am stil walking with aid and a walker but on Monday and Tuesday I thouught there was no way I would get to this point before 2 weeks. So as mch as it sucks and as much as you don't wanna do it you HAVE to move it helps out so much and IDK why but IDC why its working.

I have had a phenomonal nursing staff here at Lankenauu Hospital right outside of Philly. HIGHLY recommened Dr. John Marks as a surgeon, great team behind him, has his patients on a newly renovated foor and thats where thiis truly amazing staff is. Not one complaint to give about anyone here and I've been here since June 6th...ENough of my advertisment haha

I feel amazing but thats only bc I have a positive outlook on this. My colon was soooo close to perferating (?) i was VERY sick. I can only look at this one way and that HAS to be positive I have my life back. Ya i have temp bag at 25, idc if i had a permanent bag, I can have a life again. Even still being sick and tie up in the hospital I would take this day over any day while still having that abusive colon. Acceptance didnt come till I had enough but if you had enough dont wait! I got a little wy to go but its only recovery. The bad part is gone


Also test came back and there is NO Cancer!!!

Ramesses, like I said I really had no other choice. According to my surgeon and his team my colon was literally falling apart as they took it out so I was VERY VERY sick. I had one of the worst my gi had seen in his 30 years. Also 5-6 times would be a godsend to me I was going 10-12 just at night. Constantly in the hospital and this was only a 4 month period It cam on QUICK so a quick decision had to be made. Also there is no urgency to the 4-5 times Im told its go when you want compared to going in my pants . THAT was not norma I am 25 yeard old active kid who just lost 60 lbs, cant leave the house and I am wearing diapers. I am doing the 3 step procedure so i'll have the bag for a bit, which isnt the bad really haha.
But it removes the symptoms of UC, it greatly reduces your chances of cancer as well and I had a colon that was literally killing me I needed it. I gave it my best to avoid it I really did but in the end I feel 100% ok with my decision regardless if I have those rare complications in the future bc life in general was a complication with UC. If you feel life is normal under your current cndition than thats all you need. I just needed that devil out of me to be able to feel "normal". But remember its YOUR decision. Good luck with everything I hope medication is the way for you!!!

hey cowboy I came in so sick and all my nutrients were gone I had to be fed all my stuff thru a PICC line thru my main artery for over a week before they would touch me. The healthier you are the less surgeries you made need. It would have been to invasive to create the J Pouch on this first time. They really can't say for sure whether or not it can be 2 or 3 steps until really theyre are in but they cn always plan ahead with you. I would get it done sooner than later but thats just me looking back bc I gave it my all to save it but it was trying to kill me. I came close to death a few times it had me so sick..by the end i was begging for surgery. it took me hitting rock bottom like an alcoholic who does and gets sober.
But it is YOUR decision but I would meet with a colorectal surgeon now to discuss options and have him work along with your GI to get the best consult

BTW I am going to be 26 in month so I know what your thinking about at such a young age but I look at it like I am supposed to enjoy this time and I was NOT. Ask yourself if you are living life to its fullness or if these disease is limiting you. Good luck and stay on here. ALot of people seem to leave after positive experiences and the forum is left with a bunch of scared people like me who are searching for answers and that can never be good haha