Good Morining Stephalynnd,

There are stories to make one concerned generally posted. You have heard the old adage.. bad news travels fast while good news could be classified as Turtle-ish. I also had the two stage loop ileo. First op was in November 2001 with closure and re-section and pouch formation in Feb. 2002. Mine was a total-colectomy. Also had it done by Dr. Strong at the Cleveland Clinic. For me, it's been wonderful. Of course if you over-look the BM trips. My issue was more of high output than many of the other issues you may have read about. Diet, diet, diet is and I feel my biggest assistance to pouch health. I did have a few years of pouchitis problems but honestly and I am likely a special case but I made an effort to stay away from as many meds as possible. I religiously consume Fiber containing probiotics every morning. It eventually cleared on it's own. Again that was for me and it may not be recommended. Currently I take absolutely nothing and really never have other than a good solid (no pun) ;-) diet. On a side note; I do eat just about anything but more so as a special occasion than typical. Yea, even hot wings. Sure I get the butt burn but I've always had a high pain tolerance and believe me that burn is unmistakable. You do want to be very careful with your diet and chewing while wearing the colostomy bag. I also recall trapped gas was very painful during those first months with the bag. Well, I've jumped around a bit but stay strong things will be great. (fingers crossed) Please feel free to contact me at anytime if you need someone to chat with. I know many wonderful pouchers are ready and willing to lend a shoulder and ear. Hit me back with any questions. Godspeed and my prayers are with you.

Hi,

I am willing to speak with you on the telephone if you would like to talk to some one.

On this board, I am probably one of the individuals who has a jpouch the longest.

One thing to remember is that this board has stories of people who have have issues; There are many satisfied jpouchers on the planet who have no reason to connect to this site. They are obviously doing well.

The quality of my life changed drastically following surgery. First and foremost, it removed the chances of having colon cancer. People with colitis have an increased chance over the general population of getting colon cancer. As each year goes by living with ulcerative colitis, the chances of getting colon cancer increase.

A good friend of mine had ulcerative colitis for many years. He did not have the surgery in time (and was not properly followed up). He got colon cancer, lived with it for 5 years and has since passed on. No one wants to be in that situation.

In terms of quality of life, there is nothing that I cannot do. I am fully active in an any activity / sport that I want to participate in. I have never been limited for anything post surgery.

There is an adjustment period, however the disease will no longer control your life. No more accidents, no more incontinence, and no more being a slave to the toilet.

I am in control now. I do not get urges to go to the toilet immediately without warning.

Sure there are no issues pouchitis, butt burn, and so forth. All this can be controlled by medication and healed. I am not an any medication, nor have I suffered from pouchitis for a few years now. I have also learned what food I can eat and what I cannot.

So, would I do the surgery again if I had to make the choice all over again? In a heartbeat, because the difference is night and day.

Do you have skype? We can connect on Skype if you provide a time and date when you are available. Message me for time and date.

I live in Montreal Quebec, Canada so our time difference is something like 12 hours (I am in EST time zone). My skype handle is Silanis One.

Take care and good luck in your surgery.

Best Regards,

Solomin

Hi Steph,

This site is great, but yes, it can be freak-out inducing. I postponed my decision to have surgery (from after high school til after uni) because all the possible complications scared me off. Worst decision I've ever made! I lost another 4 years to UC.

But enough about me. The surgery/recovery is no walk in the park, and the j-pouch takes some adjusting, but dealing with UC since 2003 and colectomy/ileo since March means that you've already been through ALOT and are probably made of tough stuff.

You might have a dream run with your pouch, or you might get thrown some curve balls, but you'll get through it. And the overwhelming odds are you'll be a success story, as most people.

Good luck! And remember, this site is a goldmine of information. Any question you may have has already been asked by someone else 10 times before. It's such a great resource to have. If you don't know, there is a good search function which means you can find answers right away without having to necessary wait for responses.

ah thanks everyone for the positive words.
makes me feel better.
off to hospital tomorrow so it's pretty much out of my hands unless i do a runner LOL.

thanks again and im sure i will be back with heaps of questions during recover about all sorts of butt issues!

x

Hi Steph,

I see you are a GC girl! I grew up on the coast and moved to Brisbane a few years ago now.

I am a very happy owner of a j pouch. I had my colectomy early last year and have been using my j pouch without issue for over 12 months. No one suspects I am any different to themselves unless they knew me during my UC days.

I am more than happy to chat to you over the phone or by pm if you like, so funny how many Aussies find each other on the American boards.

Best of luck tomorrow. Remember to stay positive and let others help you during your recovery.

I look forward to hearing how your recovery progresses!

Laura

Good Luck! I was smiling all the way into the operating room. Please focus on the positive. When you wake up you will feel like you've been hit by a truck but that doesn't last too long.

I'm still having some problems but am glad I've got the operations behind me.