New and confused!

I think alot of us may have had the thoughts at first about why we didn't just keep the bag I know I did too. It was a year April 18th since my reversal and I have to say it was a rough year , things are settling down now for me. As many say on this site take it a day at a time in your recovery , things will get better. Hang in there and this site is the best place to be for questions and concerns!

i used Metamucil (psyllium husk) and a bit of Lomotil from the very beginning. That helped thicken things up and keep the frequency down, which helped with everything else. Are you doing anything at all to manage the diarrhea?

It definitely gets better. I had a bad experience also with my surgeries where I had to have an emergency surgery in between my 2 surgeries due to a twisted intestine causing my bowels to leak into my body where my side turned green and was at risk for sepsis shock. I was also plagued with inelfections. I had three drains in me at one time to drain the infectious fluids out and I think as most of the Jpouchers know those are not fun to get pulled out. It seemed like it was one thin after another and I was never going to recover. I had multiple trips to the ER in between operations for complications. I wanted to just call it quits. It seemed like all the complications that me and my surgeon went over pre op days happened to me. I am now almost 8 weeks post take down and things are starting to look up. If you suffered from UC for many years you should think back to those days when having a hard time. The days of 15-20 bathroom trips a day that were painful, bloody, and impossible to hold (I know because I've crapped my pants before). Those days are now over and you are in the healing process. It seems like you've had a rough ride but that poisonous colon is no longer in your body. It definitely takes time and patience as I'm still learning tips and tricks myself to get the right diet so I'm no hurting constipated in the bathroom and also so I don't have diarrhea and worry about leaks or skin ripping off the hole in my butt. I beg you to hang in there it seems like you have already prevailed through the hardest parts of it. Now is the time for us to celebrate because in the future we will have freedom that we haven't felt in so long. This is a great site to be a part of. It gives you confidence that you are not alone through your struggles. I've been taking Citucel 3 times a day with half the fluid you are supposed to and that helps form my waste but not make it to watery. Your diet is more important now than ever in your life. Keep a log of what you eat and when you eat it and how it affects you. It seems like you're looking for a speedy recovery and you just have to take it slow and stay positive.

hey all!

Holly- it's nice to know that you went through the same feelings as I did


Scott - I am watching my diet, and living off bananas with every meal as I find that it helps. I am also avoiding fizzy drinks, tea, coffee, spicy food and chocolate. Pasta and potatoes are starting to become a staple (nothing new, as I lived off them when I was at uni :-))
As for treatment, I mentioned various creams.


Phonix2g - It was unknown at the time. I was ill for a few months, losing vast amount of weight and drinking no end of water. Everytime I went to the doctor, tests always came back negative. It wasn't until I was visiting my parents that I went to another doctor, who referred me straight to A+E. It was the hospital that diagnosed with UC and an emergency operation was performed.... I woke up with an ileostomy, so you can imagine my surprise and resentment when I saw it... I was 26yrs old at the time (2010). After the pouch formation, I was also in and out of hospital because of constant infections and also a break in the join, where I mentioned about the feces. I was on the SNAP programme at the hospital and had to be fed through a line in my neck for week, that was also used for antibiotics and fluids over 24hrs a day for a week. I admit, that I am not the most patient person, as I have always been an up and go person, constantly on the move, so this set back has been hard for me to deal with... not used to taking things easy! lol

Still, I am looking forward to the future, as you've said... things can only get better from here on out

Cautious-
Some things will get better simply as your recovery progresses. Other things will improve as you try things, pay attention to the results, and patiently learn what works for you. I do recommend you try something to manage that diarrhea - at least psyllium.

Your post could have been written by me and many others here. The first year with my j-pouch was full of problems, pouchitis, horrible butt burn, you name it. Sleep was out of the question and I was at the end of my rope -- is this what life is going to be like? Do my doctors really expect me to be able to live, work, etc., like this?!

Fast forward -- my pouch settled down and life became very normal again. I have had my pouch for 14 years and I rarely think about it anymore. I don't have to get up during the night to go to the bathroom, I work, I play, six years ago, I had a baby, I eat what I want, I live my life. I don't take lomotil, immodium, any kind of fiber or anything and I seriously don't give it much thought. I even had to look up the name of immodium for this post because I couldn't remember it!

For many of us, it takes a lot of time to adapt. Some like me needed to lower their expectations for a quick return to normal. I had made up my mind to give it a year and if I was still unhappy, then I would address making a change after the year had passed. Thankfully, that was my turning point and it's been smooth sailing ever since.

But now that I've said that, I'm sure I've jinxed myself!

Most people end up satisfied with their j-pouches in the long run and the odds are in your favor that you will, too. Best wishes to you for future success, though it may be slow going. Hang in there!

It takes quite a while before your body figures out how to handle what just happened to it.

Yes, there will be bad days, I had a lot of them, but over time, you will have more good days than bad. But it can take a long time before it happens.

Having patience and faith will both help, as will having a sense of humor.