Surgery but not so sick???

I don't think you need to try every medical option and wait for them to fail before having surgery. I never wanted to take Imuran or Remicade- seemed like a bad idea to turn off my body's main defense against illness and disease. The long term side effects of Remicade are also unknown. Some people are comfortable with that and willing to take anything to save their colon. I was not. I did take Remicade to get out of the hospital and avoid emergency surgery when I was horribly weak and sick, but I knew I didn't really want to be on lit long term and that I wanted surgery eventually. Ended up having horrible side effects to Remicade anyway... so that was that. I chose a permanent ileostomy as I did not want to deal with multiple surgeries or the unknowns of the j-pouch. Seems like everyone who has a j-pouch has a different experience: some really great, some bad. I just wanted the predictability of the permanent ileostomy. I am also into a lot of outdoor activities such as rock climbing, backpacking, trail running, snowboarding etc. and I thought these would be easier with an ostomy pouch as I would never have to worry about frequency or urgency issues when up on a rock face etc. Could just swap out a pouch on a two-piece ostomy system on a convenient ledge, or empty it along the trail by digging a cathole when needed. So far, life with an ostomy has been great. I am 5 months post-op and went backpacking last weekend. Other than having to get up in the middle of the night to empty, everything was a cinch. And even that was really no big deal. Just something I will have to get used to.

As far as trouble going and time spent on the toilet that is actually one of the nice things about the pouch, I can go in about 5 mins or less. Once agian it took me near a year and a half to be able to do that but really those 4 to 5 times on the toilet can be played off like you were taking a long pee or something. I've never been on to be embarrassed about my bowels I'm pretty opened about it with friends and employers and they are understanding, I mean what are they gonna do tell you you can't go to the bathroom. I find personally I have to go once immediatly when I wake up, then once after breakfast afternoons vary but I either go after lunch or after dinner, and finally I personally like to go before I'm about to fall asleep whether I feel like I have to or not so I don't wake up to go in the middle of the night. Took a while to be this normal, but its been worth it for me. Good luck either choice is a good one as long as you feel you can handle the situation and your not on deaths doorstep. If you have any other questions I'm always willing to talk one on one.

Yahoo: JK51Italian

AIM: Fridgedmonkies

God bless

John

Post Edited (Johnny K) : 4/20/2011 7:24:19 PM (GMT-6)

     I just want to quote what my GI doctor said to me at my first visit with him after my initial Remicade infusion (which worked wonders at the time).  Mind you, he was pushing Remicade on me for two years prior to my finally taking his advice.  He was elated that I was feeling so well and said, "Chris I am so happy Remicade worked so fast for you.  I thought it would.  Now, if we can keep your ulcerative proctitis in remission for fifteen years before you get Lymphoma, that would be wonderful!"  What the heck????  Was he trying to tell me to expect to get Lymphoma???  Ironically, Remicade failed after my third infusion and I did try Humira for three months with no change.

     I'm 64 years old and granted, I know sooner or later some disease or other will lead to my demise, but to tell me to expect Lymphoma?  That's going over the edge.

     Glad I had my surgery last year.  I never returned to the GI doctor.

In answer to your questions:

1) I'd say unless you are lucky give yourself 6 months from the first surgery to the time you are feeling ready to get out and take on the world agian. (2 months after the second surgery or so). With that it depends on how you heal, whether or not you have any bouts with pouchitis, and how quickly you learn about how your body will handle different foods as to whether or not you have to "hang around the toilet" I was going to school and work in between the first and second surgery but then had issues with the ilostomy bag sticking and had to stop everything about 2 weeks before I had the reconnection surgery ( I'd say to laying up till after the second surgery is a better way of recouping). As far as urgency immediatly after you are reconnected, its a little ridiculous. On top of the fact that you hardly eat 2 bites of a meal and feel full you kinda have to go pretty soon after you eat anything. That went on for near 2 weeks for me. After that I started getting more and more time inbetween my trips to the toilet. I also read that holding your movements until you literally think your gonna crap yourself helps to expand the pouch. Don't know if it actually worked but like I said I go about 3 to 4 times a day now. Oh and speaking of crapping yourself...lets just say steal some hospital shorts and be prepared for a few clean ups at night for a few months after the surgery.
2) I'd say I wasn't completely "normal" for near a year and a half. I was ready to take on the world by the 7th month after my first surgery but my body held me back a bit.
3/4) Some days there is urgency but that can be figured out by what you ate (certian foods make you go less some make you go more) I make it a point to eat 3 apples a week, some bannanas yogurt everyday ect... there are lots of websites about foods that help to firm you up and lessen your BM's basically high fiber is a good bet if you feel your going to much. If you get the flu count yourself out it sucks and basically your down for the count. Pouchitis sucks but its easily managed pepto for 3 days 2 doeses a day seem to clear me up just fine, but make sure to get ahold of your GI or surgeon the first couple of times then experiment with over the counter stuff. You also have to learn what you can and can't eat agian blockages can be a common thing and they hurt, with nothing the doctor can do except to tell you to drink lots of water, I had one cuz I ate to many carrots, nuts, and mushrooms in the same day and it took me 3 days of screaming hell to clear it. Never again. For the most part you don't have any pain unless you are having one of those 3 afflixitions I mentioned. Finally long trips are a breeze if you don't eat to much. I figure 6 to 8 hours is the maximum anyone can go without peeing and I've never had a trip were I had to stop before someone else also had to go, make sure when you stop to go, and avoid snaking the entire time because it goes through you faster than everyone else, and when you fill up you gotta go. I like to snack when I'm driving so I set myself limits; hard candy, soft candy, chew gum, avoid the chips or anything fried seems to make you go faster, an apple is always good and drink lots of water it helps digestion slow at least in my case I feel it does. I've also found it easier to hold it if I have to when I'm sitting than when I'm standing or laying.

Hope this all helps good luck with your decision
Keep us updated

John

Hey Johnny,

Any luck joining the military? I know this post is a bit old, but I've been trying to join the military with my J-pouch too. Wondering if you have any updated info from your end? One recruiter is telling me not to mention it, and I should be able to sneak under the radar. I'm on the fence about this proposition.

Thanks!

Drew