Hey everyone I really appreciate you guys taking the time to read and write out something I am doing my best to try and get in a better mindset.
Woogy - I am feeling okay, my day's usually have been having there up's and downs... I get quite depressed in the mornings and then the afternoons/evenings I usually have a bit better attitude towards everything. As far as physically I feel okay too. The bag's not terrible, I am lucky to have not had any leaks or anything but it is a weird feeling having it on me. I am glad the surgery's went well for you, I really hope that I can have a good result too.
3timechamp - Thank you your comment really made me smile
I have to accept the fact I had to have surgery it just is hard sometimes when a couple weeks ago(beginning of january/end of december) I was pretty much in a state of remission and now I have my new years resolutions being stripped away from me and its a 180 from everything I had planned for myself. Including possibly losing my job to this surgery/UC. It is hard to come to grips with.
RunJerRun - Thank you for your advice
I know I will eventually return to feeling like myself again but it is hard to think about
the future right now with all the surgery's planned and recovery times etc. I am sorry about
the past year that you have been having it sounds pretty tough but I am happy that you are getting to do the things you want to. Sadly I have already fallen into that trap and have read countless stories about
failed jpouches, part of the reason I have been so depressed is because I am so unsure whether or not it will work for me. I have been trying to counteract it with positive ones but its a tough mental game sometimes.
Virdent - I suppose that is a good way to look at it. My boyfriend also tells me this to cheer me up when I am down that I won't have to worry about
colon cancer now. You are right on that it can't get worse at this point and I did have a really successful first surgery. We do adapt quite well, I feel I eventually will have to adapt but right now thinking about
it seems so difficult. Sad thing was I wasn't suffering too long with colitis, I had just failed most of the meds. I suffered with some symptoms sure and the only two flares I had were very bad ones but overall I had been pretty good up until a few weeks ago. That's my mental barrier is that is happened so fast all of this stuff it is overwhelming to say the least. I am sorry that the pouch did not work for you but glad you feel good still. I keep hearing that and want to believe that those people that are happy with their pouches are all living their lives, hard to believe it sometimes though.
ks1905 - I would consider a failure to be having to have the pouch taken out and replaced with a illeostomy(assuming that is what you meant) I don't mind having to go more than the average person or to deal with butt burn etc. I have read all that stuff and it doesn't phase me but having it so bad it has to be taken out is what I consider a failure. I really hope I get to a point where I can also have beers and chinese food with a jpouch! That's the goal. Yea my surgery was 10 days ago, very recent but I am at home. I got released from the hospital quite quickly after my surgery because I did so well(luckily). Before my surgery, I hadn't even lost any weight or my appetite this last flare so I guess it's still hard to wrap my head around because I wasn't extremely sick. However I was still going 10-15 times with 60mg of IV steroids and two loading doses of infliximab in my system(administered 4 days apart). I get down in the dumps a lot of the time wondering if I should have pushed to try a different drug like humira, xeljanz or a clinical trial but I can't be doing that anymore because I suppose what's done is done. Regardless for me I guess it is hard to think about
because I truly was healthy and in remission about
a month ago and now I am 10 days post-op with no colon.
Ulcerative colitis diagnosed in 2014/2015
Meslamine, entyvio, remicade, prednisone failed.
Three step pouch surgery
1 - colon removal - 02/10/19
Two more to go!