20 year UCer that has just finished the j pouch journey and ready to get on with life!!! I am feeling great so far and hope it only continues to get better.
Some more about me:
From central Ohio and love to fish, hunt, coach basketball and just hang with the family. Oldest daughter just graduated from UT, youngest daughter is a freshman in college and playing soccer and my son is almost 14. I don’t think I am that interesting but my wife swears she has 4 kids with me around and my kids tell me the same thing. After going through what I have the last year I don’t get to uptight or worried about much anymore.
I have ZERO UC symptoms!!!
My J Pouch Journey Complete
I have posted my first two surgery outcomes on this site earlier this year and it is time for the third and final one. Hopefully this will help those facing this same journey.
I came to this site when I first learned that I would have to have my colon removed after a colonoscopy in Oct. 2012. I was feeling absolutely terrible, trying to make it to the toilet 15 times a day and I say trying because I know there were time that I did not make it if you know what I mean and I was losing about a pound a day. This site not only gave me the information I was looking for but also some calm before the storm.
My colon was in such bad shape that my GI sent me to a surgeon at the Cleveland Clinic (God blessed this surgeon’s hands because he has done wonders for me) and told me not to wait much longer because my health was in serious decline. On top of the colon issue the UC had attacked my joints to the point that I had to have help standing up from a chair and getting out of bed in the mornings. At that point in time Vicodin was my only real relief in life.
My first surgery to remove my entire colon was in January of this year 2013. Needless to say I was scared shitless no pun intended but the crew at the clinic did an awesome job putting me at ease and when I realized I only needed a 4 inch cut to have it removed I felt a little better about it. The stay in the hospital only lasted 4 days but it was miserable now that I think about it again but nothing depresses you more than when you see your stoma for the first time and learn that you are now officially crapping from your belly instead of your butt. The recovery from this surgery really was not too bad because I had a 4 week supply of narcotics to get me through, again the only rough part was the learning curve on how to care for my stoma (sparky). I got a terrible skin rash around the stoma but nothing a visit to the stoma nurse couldn’t resolve. I did learn to get along pretty well with this end ileostomy and started to really feel good about it and all of a sudde n it was time for the next surgery. The joint pain got a little better but was still very painful at times.
The second surgery took place on June 5th and this was a doozy. It took the surgeon 7 hours to create my j pouch due to a few complications but he was able to work through it. I was in the hospital for 3 days this time but went home feeling like crap. Again, it was only a 4 inch cut but this time the recovery did not go so well. I was in a lot of pain a lot of the time and to top things off this new stoma I was sent home with was a loop ileostomy and leaked all the time. It took me a couple weeks and help from Hollister to find the right products to stop the leaking. I was also sent home with a JP drain to keep from getting an infection. This thing sucked bad!! It was always in the way and when the surgeon took it out it felt like a snake was trying to get out of my abdomen in a bad way. I wish to never think of that pain again. After a couple trips to see the surgeon and have my pouch scoped and 4 weeks prior to the third surgery I started to feel good again. The pain was gone butt now the mucous that is produced from the inactive pouch became a nuisance. About once a week I was on the toilet passing mucous all day long. The joint pain again got a little better which was awesome but I was really ready for the bag to be gone. I disliked this temp ileo so much I did not even bother to name it.
Again right when life was getting better again it was time for the third and final surgery on 9/11 of this year. This surgery was much less invasive and only took a couple hours rather than an entire work day like the last time. I woke up feeling great and really have never felt bad at any point since the final surgery which has only been 8 days from the time I am writing this. I was only in the hospital for 3 days again but could have gone home after day 1 but the Dr’s just like to make sure my food was settling well and the pouch was working well with no clogs before sending me home.
It was such a relief to wake up and realize that the bag was gone. I was going to post a gross picture of the opening my stoma left in my belly but just couldn’t do it. They left it partially open to heal from the inside out and to keep infection from brewing so needless to say it’s not a pretty thing but it looks better everyday and I only have to cover it with a gauze pad. I felt so good I did not want any narcotics this time but I did get a mild NSAID to help if needed.
Now the really good news!! I know it has only been 8 days and I know I will eventually have a bout with pouchitis or maybe even the dreaded C-diff but at just 8 days post op I actually feel normal again. I read many posts about the dreaded butt burn and butt rash and also of the gas that comes with the new pouch and the many trips to the bathroom and leakage I will have until my body gets used to the pouch.
Again, I know it has only been 8 days but I have yet to have the slightest hint of the butt burn or rash and I think I know why. For some reason my doctor told me to take 2 prevacid a day once I got home even though I do not have indigestion and haven’t since my colon was removed. I think the Prevacid not only prevents the acid from coming back up but I think it prevents the acid from going back down into my stools that would in turn cause the butt burn. Only hours after the j pouch was hooked up I started having my first small bowel movements and major farting from the pouch. I think all of this initial farting released all of the gas from my body so in turn I have yet to have the slightest gas pain that came with the first two surgeries. Now comes the part that I love the most. I was worried about all of the trips to the bathroom that I would have and leakage just because most everyone else was having them too after having the pouch connected. The first two da ys home I was probably going to the toilet every three hours but it has gotten better everyday and today it is just after dinner and I have only had to go to the bathroom 3 times and so far no time leakage and no sharting of the pants has occurred.
My new pouch is working great, I am sticking to the GI soft diet and probably will forever as long as I have the results I have now. I eat 3 smaller meals a day, avoid the sugars and snacks before bed time and so far so good. I wake myself up at 3am just to empty the pouch and it takes maybe 30 seconds to empty, put on a little butt cream to help avoid rashes and butt burn and back to bed for a couple more hours. It is hard to describe but I do know when the pouch needs to be emptied but it is easy to hold until it is convenient for me to go. The sudden urges of having to run to toilet just aren’t there. On top of everything else the joint pain is now at a manageable level. I still have a some minor issues with my joints but nothing like it was pre-surgery. Knock on wood and I do not know if there is any connection but since having my colon removed I have yet to even get a case of the sniffles even after the worse flu season my house has suffered in a long time earlier this year.
I feel truly blessed right now but also know that my journey with this new pouch has just begun. I thank God everyday now for the Cleveland Clinic and for most importantly how my friends and family that have helped me mentally and physically this past year. My wife has been a trooper through all of this and the company I work for was more than helpful and understanding. I know there are many details I could have added but I am more than willing to help answer any questions anyone ever has about UC or the j pouch procedures that I went through. One last little important thing to all j pouchers and future j pouchers. Make sure you wear a medical bracelet letting everyone know that you have a j pouch. In the case that you ever need something shoved up that back end again due to an emergency and you are not coherent they need to know because the typical colon hose will not fit and could cause major j pouch ending damage if forced in. God bless all UCer’s (and everyone else as well) and I hope my story helps someone.
No meds really worked for me. I just learned over the years how to deal with the flares.
Remecade is the devil’s potion that actually made things worse.
submitted by Mike in the colitis venting area