Most of you probably don't remember me at all. I posted my original introduction and story last March.... Newb here...
Well a lot has happened in the last year. I will attempt to keep this as short as possible, as I do have some questions regarding the weeks following post take down.
As I mentioned in the previous topic I was scheduling a surgery date at the Cleveland Clinic for the first of the three surgeries to remove my colon. I had the first procedure on April 11th. Everything went off without a hitch as far as the surgery goes. My Dr. decided to do a midline incision as opposed to laparoscopy. So, I was in a good amount of pain the days following the procedure, BUT I was shocked at how good I was feeling. It was nice not to have the horrific pain caused by the UC. That alone immediately confirmed that I had made the right choice to go through the surgery.
Once I got home to enjoy my 6 week recovery, things improved faster than I expected. Even though I had to be on the “soft GI diet” I was able to enjoy some foods that otherwise would have made me miserable.
Dealing with my new ileostomy was a bit of a challenge at first. I had some problems with leakage and the adhesive not sticking to my skin. Once some of the post op swelling had gone down, and the staples were removed, those problems vanished. I met a guy in the hospital, who told me about the Stealth Belt for the bag. If anyone is looking into getting these, they work! I ordered two types. One was meant for everyday/night use and the other was a neoprene “extreme” version for active sports…I was really looking forward to summer - I have a boat, I love to wakeboard, wakesurf, and slalom ski. I was able to enjoy most of my normal summer activities without any problems.
My second surgery was scheduled for late October. I could not believe how fast 6 months went! Everything with the second procedure went well. From all of the reading that I had done, and info from my Dr, I knew that this second surgery was really going to knock my on my butt, and it sure did. There were many days that I didn’t want to get out of bed. I felt worthless. The new loop ileostomy was not a pleasant experience either. I was switched over to a convex flange which always seemed to leak around the barrier ring, which inflamed the skin around the stoma site. I eventually experimented on my own, and tried one of the normal flat flanges and barrier ring, like I had before. What a world of difference! No leaks, and the skin irritation was gone. I guess I was one of the lucky ones that didn’t need to have the convex flange. Once Christmas came around, I was finally starting to feel more energetic…I’m a very stubborn person, so I had to keep reminding myself how much trauma my body went though. Things will take time to fully recover.
Surgery Three…Probably the one that I was most apprehensive about. I know this sounds crazy since the procedure itself was very simple. I was/am concerned about the weeks/months following take down. The procedure was scheduled for Jan. 23rd. The procedure was very uneventful, like my Dr. had told me. Pain was minimal…I was off all pain meds two days after surgery. I was expecting to be out of the hospital in a few days. Well, that wasn’t the case. My bowels were very slow to “wake up” and as a result, I became very distended, nauseous, which eventually lead to vomiting. The dreaded NG tube was mentioned, but never happened. After 7 days sitting in the hospital and slowly advancing my diet, I was able to go home.
So here I am home…Now is where some of my questions come in.
Everything is functioning with the new jpouch. Everyday is different when it comes to how often I’m in the restroom. I would say I’m averaging 8-12 times a day and at least two at night. I’m really not trying to keep an exact number…the way I look at it, I’ll eventually decided whats going to feel normal.
Butt burn hasn’t been too bad. The nurses at the Cleveland Clinic gave me what they call “butt paste” which is working great.
Here are my concerns/questions:
1. Do many of you pouchers have to, or dealt with really having to “push” to have a bm? I don’t feel constipated by any means, but I’m too the point that it’s very uncomfortable to sit, like the muscles are very sore from an intense work out. Has this happened to anyone else? I’m trying to remind myself not to push so hard, but sometimes it is all that I can do to feel relieved.
2. How long did you deal with feeling or urgency until your brain learned that was the new norm and it eventually didn’t bother you?
3. Passing gas seems to be a challenge. It seems that the only way I can get it to move is if I lay on my side. Sometime it will pass when I’m in the restroom but it seems difficult. I guess this relates back to my fist question as well. What are your thoughts?
Thanks for taking the time to read this. I’d be happy to elaborate on my past experiences. And I’ll trying to keep up-to-date with post takedown recovery and life. :-)