impending 1st step, not feeling so bad.

I agree that you get used to living with UC everyday and you forget what normal is like. You have to tread on with life each day so you muddle through. I did it for five agonizing years. It wasn't until my diseased colon was gone that I realized what it felt like to be well again.

The surgeries are tough but in the end it's so worth it. All the best to you....when is the big day?

Thanks, May 22.I was diagnosed at in 2004 at 32, starting out mild and progressing to pancolitis. tried everything too. I also look forward to not seeing blood, wondering if cancer is the culprit, especially since I am going on 11 years. I hope I will less distracted for my kids, and will be able to get a better job. Are you still doing well with your pouch?

Yes it's quite normal for your colon to start behaving when ure surgery date gets closer.... I too had no pain with my UC just bleeding mucus urgency and frequent accidents.... It becomes your normal particularly when uve suffered from chronic illness for so long ... I agree with Marianne U don't realise how ill you were until good health is restored......
I'd had UC for 20 years and the final few years before I opted for elective surgery were hellish I had two young children and felt that I was struggling. .. My decision to have surgery was in part for the sake of my kids and so that I could do all the things I wanted to do with them.. even simple things like riding bikes to the park without fear of having an accident and having the energy to do it in the first place!! In felt like you that I could cope with the frequency with a pouch provided I could hold and empty when I chose.... Fast forward a year and a half from surgery and I have no regrets about having a pouch... Very glad I opted to have surgery which has totally transformed my life and benefitted my family hugely.... Surgery can be a tricky road for some but the vast majority are very happy with the outcome.... Best of luck to you in your journey..... X



MM

Yes, I'm still doing really well.
I don't know where I'd be right now without this procedure. I'm so grateful for it. You mentioned your kids.....I was in the same boat. I missed out on so much with them when they were little because of UC. But not anymore!

Are you having a two or three step procedure?

Well, that definitely gives me some hope. Knock on wood - I also hope it will be easier to figure out what foods affect me with a pouch, than with UC. I had the worst night last night. I think I was up five times. At one point I was in the bathroom 10 min. went to sleep, and sprang up 20 min. later. If I role onto either side it triggers it. Anyway wish me luck. I will tell my story either way.

Please come back any let us know how you made out. I know from a while ago when you were posting that is was a long time coming. Good luck!

I never had pain with my UC either. It just got to the point that I started having more and more accidents, the blood was non-abating, and a hospitalization on TPN, high dose steroids, and bowel rest didn't work. I went to the bathroom a lot, but never really *felt* bad. But regardless, it was out of control, at the end of 9ish years, and for the time, I had no other medical options. I hope you have good luck!

I will ask my doctor, but when can I drive. I hope its sooner than the 4 weeks out of work. Are you allowed to sit at all. I have no clue.

I was told no driving for 6 weeks. That's only because of being on pain meds. If you are off pain meds faster then you could probably drive sooner. I needed the pain meds for a while. I had a two step (not sure how many steps you are having) procedure so the first step was the proctocolecotmy and the j pouch creation at the same time. So a lot involved and I happily took the pain meds for a while. You can sit....that's not an issue.

Yes, good luck. I had my first step surgery on May 23 of last year. The surgery is no picnic, but I am happy to say it was all worth it. I feel like I have my life back and my children have their mom back.biggest obstacle for most are stoma related issues. Make sure you have a great nurse that can help you get use to your ostomy. I had to try several types of appliances before getting one that didn't constantly leak. That was my biggest hurdle. Once that happened she went fom "**** hole" to "poopsie". You have to find some humor to get through it. Anyway, best wishes for a successful surgery.

oh - I hope I can get off pain meds sooner - I really need to drive - deep breath. Thanks everyone, Happy Mother's Day! I am having a 2 step as long as things aren't too inflamed.

Happy Mother's day to you too! I will be thinking of you on the 22nd. All the best!

3 days to go, getting nervous. Just wondering for those who are happy with their pouches, How do the sensations compare to pre UC. In between bowel movements are there periods or no sensations or is there always something in the pouch that you can feel, It just builds up till the point that you have to go. Hope that makes sense.

It builds up to the point that you feel you have to go. It's a different sensation than when you had a healthy colon. It's more like a pressure feeling but no urgency. I go the entire day with no sensation of having to go. My bathroom trips are usually from 4pm to bed time. That's me....everyone is different.

3 days....excited for you! Before you know it, this will all be a distant memory. I can't believe I am going on 4 years with my j pouch already. Time flies!

What you are about to experience is truly a journey! The "new you" will emerge from your trip. I always refer to my status as the "new normal"! In many ways, my J-pouch is better than the original issue ever was! It's been over ten years and I have absolutely no regrets! Best wishes!

Thanks all, but boy am I nervous. It is really hitting me today. Surgery is tomorrow. I know I need this but it sucks that I have been pretty good this last month, nothing solid, but not too much urgency, 8 or so times a day, including the 2-3 at night, still some blood her and there. I really think its due to the fact that I am on a steroid mouth rinse for a rare oral manifestation of my UC. When I would even just do steroid eye drops for my UC related uveitis in eyes, my bowels would improve. Doctors told me that would be unlikely due to the small amount in drops, but somehow I know it did. Plus the Dr. is having me do hydrocort suppositories to calm the rectum, and those always helped me. I just hope I feel like I do right now, but with more predictability of when I will have to go. Do you restrict your diet much? Do you guys have alot of gas? I have asked these questions to others, but like I said getting nervous.

I'm Home! I think I am doing exceptionally well. My Surgeon said my surgery was one of the easiest she had done, no complications, anatomy was very cooperative. My rectum was extremely diseased, that's where it all started for me 10 years ago. I went of the pain meds in the Hospital, onto just tylenol so I was shocked. My back is actually bugging me the most. Its been one week so far, my big thing is whenever I do anything, like help my daughter with her hair, I get pretty tired and my heart races. I have been walking and trying to breath deep. I had one leakage but managed to change the bag - my ostomy nurse was awesome. How long did it take you guys to get your energy level back? ?Hope my follow up pathology results are good. I am still so worried about a Crohns Diagnosis. I did have back wash ilietis so hopefully thats all it was. also the pulling feeling of the bag, does that diminish with time.