Who just had surgery? Can't find post.

I was looking for the post of our friend who just had surgery. Who was that and have we heard from him?

http://activeguts.wordpress.com
this is from activeUCer

https://www.healingwell.com/community/default.aspx?f=38&m=2494730 and this is from Peace and Harmony

If you are talking about me, I'm doing well (and yup, am a girl)! The biggest complication I had was having a "flush" stoma - meaning I have a rather complicated ostomy system but that is minor compared to others complications.

There was also somebody named dbtennesse (spelling might be kind of wrong) who has a blog at http://myulcerativecolitisstory.blogspot.com/. about five weeks out from surgery, he went and got married and went on his honeymoon!

There are other's who are posting on the ostomy board who have had surgery recently, but dbtennesse is the person that jumped out at me who might have been posting on the UC forum recently.

I definitely don't regret my decision (I'm only a third of the way through all of my jpouch surgeries though). I was on a full dose of Remicade and 30 megs of Prednisone and still having accidents. The surgeons got my colon out and said it looked really bad and needed to come out. The UC had actually gotten worse in the two months since my last scope, even with the drugs. I was done experimenting with drugs. With the UC I just felt like I was on a roller coaster of non-working drugs, except prednisone. The Prednisone was causing bad side-effects already (high BP). I didn't want to deal with high blood sugar and bone damage from long term use.

I won't lie. It's not all rainbows and unicorns...or maybe unicorns pooping rainbows! The parts that suck for me right now...I wake up to empty the bag about three times during the night. It does smell a bit stronger than having a bowel movement (I'm experimenting with different in-the-bag odor killers now). I've had several leaks at night but hopefully that's fixed by now. The accidents were not any worse than my UC accidents. Because I'm overweight right now from all the steroids, my stoma is flush with my skin. That means I have a complicated ostomy system (barrier that pushes my stoma out, multiple "rings" to further push it out, glues, barrier powder to treat an ulcer). This should resolve eventually when I lose weight. Also, I get a bit grossed out when I get splashed from emptying that bag. This typically happens when I'm inpatient. Also, cleaning the end of the bag can gross me out sometimes. I'm a bit of a neat freak though. I'm still a bit paranoid about the bag leaking or pulling away from the skin when it gets heavy. I'm looking into belts now to help make sure it stays on. Also, i still have six inches of my rectum left. The surgeon's goal with the first surgery was to get the bad out. They'll do the rectum modifications with the second surgery. So I'm still passing blood and mucus. Sometimes it's like six times a day, sometimes it doesn't happen at all. It's not as urgent as when I had UC. Overall, dealing with the bag and such now is still better than the UC I was dealing with - both in terms of dealing with the poop effects of UC and dealing with the other aspects (tiredness, dizziness, etc.). I think my quality of life has improved already.

Only a week after surgery, I felt like I did the week before surgery with the exception of some additional stomach pain from the surgery. Two weeks after surgery, my mom said I had color back in my face. She hadn't seen that for months. It's amazing what UC can take out of you.

Feel free to ask any questions. I remember your joking personality from your other posts so I won't be bothered by whatever you ask. :)

Yup, I empty before I go to bed and empty when I get up. Then probably twice during the night. I've had a tendency lately to wake up, eat, then go back to bed (normal people would just get up) - so I was including that wake-up empty as well in my three count. I typically just wake up on my own, touch the bag to see how full it is, then decide what to do. You are supposed to empty the bag once it's a third full so it's not filling up completely. I'm scared to sleep with it overly full given the leaking problems I've had, so there's probably some wiggle room there too.

My appetite has been weird though in that I'm eating more in the evening than in the morning. It generally takes 3-5 hours for the stomach to empty then another 3 for things to make it through the small intestines. If a person eats the bulk of their food in the AM then he/she would probably only need to empty once during the night. Also, when you first out of surgery I think you tend to have more output than you will in a couple of months. I generally hear people say that they empty once or not at all during the night.

Right now I'm on a post-surgery special diet (called GI Soft). It's basically white carbs and anything that's bad for you ;). I have to stay away from fruits and vegetables for six weeks, aside from canned peaches, canned pears, and bananas. I also can't eat high fiber bread, nuts, or potato skins (but potatoes are ok). After six weeks post-op, I'll be able to reintroduce foods slowly. There shouldn't be any restrictions once I'm done with the post-op diet. Occasionally people will report problems with foods on an individual basis. And if you were lactose intolerant before the surgery, then you will be lactose intolerant after the surgery.

Work on your flare as long as you feel good about it...and maybe you'll find your remission trick! I hadn't been able to live the life I wanted for a year and was done drugs/diet/etc - I was ready to start working my way to a more guaranteed "recovery."

Also, you asked me if I regret having surgery. I regret being in the position where I had to make a decision to have surgery. I wish I had a good colon. I wish asacol or one of the lighter drugs had worked for me. But since that wasn't in the cards for me, if given the choice between my UC and the surgery, I'm still going with the surgery.