I do wish I could have found these message boards under more pleasant circumstances, but I doubt most people do.

I was diagnosed with UC february of 2009. I nearly had surgery this past october, but high doses of prednisone lowered my symptoms enough so that surgery side effects would be worse.

Well they kept my symptoms down for a while, but you can't stay on prednisone forever, and eventually i had to come off, things were ok at first, but slowly grew to get worse and worse. Then I had a sudden flare up, and was placed back on the prednisone. This was two weeks ago. Unfortunately, this time around the medication doesn't seem to be as effective. During the day I do ok, butat night i have many bowel movements, about one every hours or so during the evening time, and it's usually accompanied by considerable pain.

Now you know the background, very similar to many people I've read about on this forum already.

I have a few specific questions about life after J pouch surgery, like I said i was a great candidate for it last october so it's still in the cards, but I want to talk to as many people as possible about how life is post surgery.

After you are done with the bag *shudder* and you start uses your pouch, about how often do you usually have to use the bathroom and how quickly does the frequency start to go down? Will i be looking at 10 bowl movements a day for about a year? less?

How is the urgency? Right now sometimes when i get the urge to go I have minutes if that before I have to find a restroom. This has taken it's toll on my social life, like many of you will understand. When you have your j pouch how long can you hold it when you get that urge to go? minutes? half an hour? a few hours?

I'm typically very active, was a lifeguard for 9 summers and I love to work out, run, lift weights, swim, etc. Does activity like that make you have to go when you have a j pouch? Right now it seems to make me have to go less when I work out and run.

How much weight can you expect to lose during the surgery ordeal? Before I had UC I was 195 pounds, working out in the gym and had a great physique. After I got sick i dropped 30 pounds and lost a lot of that muscle I had built up, medication has helped me rebound somewhat and I'm currently at 175, is it hard to put on weight and build muscle back up after your fully recover from surgery?

When it's all said and done, how many bowl movements can I expect to have a day say 2 or 3 years post surgery? 10? 6? 3?

Sorry for the rambling but as i'm sure you can understand this hasn't been pleasant to deal with. If anyone can answer any of these questions I would greatly appreciate it.

You mentioned that you have been on prednisone, but what other meds have you tried? I was on several different meds before my surgery one of them being remicade which worked very well for me for about 3yrs.
Now on to my surgery, I was so scared depressed when my Dr.'s finally said that there was nothing more that they could do execpt cut me open. With that being said it was the best thing that ever could have happenened to me. Both of my surgeries went about as pefect as they could go. Had my firt one on a Friday, and was released from the hospital the following Monday, and my second surgery was on a Friday and I was released the next day (Saturday). The only thing I could really say that was a problem was the terrible gas pains that I had for about 3 weeks after my surgery. I only have to go to the BR about 6-8 times a day, as long as I take a few immodium each morning when I get up. I very rarely have to get up in the middle of the night to go to the BR, which is a nice change from the days of UC where I got up at least once per night. As far as holding it, I all to well remember the UC days were seconds were of the essence when the urge hit. Now when I feel like I have to go I have held it for up to a hour and a half, with no problems. I can go when it is convient for me instead of having to search for a BR whenever I go somewhere! I am very happy with my results although everyone is different it seams with this surgery, not everything is perfect but I have a MUCH better quality of life now then before. I had my first surgery May 15th 2009, my second July 31st 2009 and continue to feel better each and every day that goes by.
Chris

I've been on asacol, which didn't help, did remicade infusions, which also didn't help. Right now I'm on azathioprine (another immune system supressent that i have to take for a separate liver issue) prednisone for about 6 more weeks, and using canasa sepositories every night. The doctor also has me on prescrition iron pills to help keep my red blood cell count up so i'm not exahusted all the time.

6 to 8 times a day half a year after your surgery seems like a lot. Especially if you are taking imodium to keep the frequency down. I was hoping for about 4 to 5 a day max if I had this surgery.

How many times a day my child would have to go to the bathroom was a big concern when we had to confront the intense decision to have him undergo this surgery at age 8. It's so amazing how your perspective changes once you live with the jpouch. While my son goes about 6-9 times a day (usually once in the very early morning) we don't seem to be so concerned with it being too many times. It doesn't get in the way of anything he does he just goes when he needs to - it's never a big deal and it never takes as long as it did when he had UC. To be honest we (and he) barely notice - if I ask him to count how many times he went he has to really think about it. He feels so much better, he eats almost whatever he wants - his quality of life is 100 times better. I also feel like when we have a bad day it's usually just because he ate something that disagreed with his new plumbing but we know it will get better - with UC every bad symptom felt like the beginning of worse things to come

How many times a day I will go post surgery (if i have it) is a big concern for me too. I love to scuba dive, my dad was an instructor long before I was born and I've been going since I was 6 (He had a little kids tank and mask he special ordered for me and my brother)

But with my condition, even if i had the surgery, spending 12 hours out in the ocean on a little boat really isn't much of an option anymore. I hate that my life will never be normal, but I'm just trying to see how close to normal I could potentially get.

I'd like to start out by saying that the bag isn't as bad as you think. You "shudder" now, but I bet you will be so happy that you're no longer sick that the bag won't even bother you.

I couldn't tell you how many times I go to the bathroom in a day. My standard answer when the doc asks is 12, but I really don't know. It's not very noticeable and it hardly impacts my life. I coming up on two years post surgery, and I would say on average I go 8 to 12 times a day. Sometimes I go more, sometimes less.

Urgency for me is almost nonexistent. There have been times with I have held it for 5+ hours. It wasn't very comfortable be the end of it, but I could have held it longer if I needed to.

I haven't noticed an increase in bathroom trips when I am active.

I lost about 25 pounds during both surgeries. But after I started to have a more normal diet after takedown I quickly gained back most of that. I currently weight more than before I got sick.

I can't imagine not hating the bag. Being stuck with it permanently (however unlikely) would be devestating. Like i mentioned before, I was a lifeguard for 9 summers and LOVE the beach. Can't imagine ever going again if I was stuck with that thing.

There's no comparison of life with a jpouch and life with UC. Remember, once you have surgery you will be *healthy* so to deal with the immediate concerns of recovery, frequency, discomfort, etc will be easier because that is all you will be battling. There is an adaption phase post surgery that will include higher frequency, possible urgency, but it will pass. To give you an idea, I had frequency in the range of 10-15X per day but still went camping and hiking in the Sierras 6 weeks out of surgery. At 3 months, I traveled through Europe and at 6 months I did a half marathon. Was I fully recovered? No. But I was able to enjoy those activities anyway.

Since surgery I have done 3 international hikes in the range of 100-200 miles each. I have hiked in and out of the Grand Canyon, backpacked in the Sierras, taken on and completed almost the entire John Muir trail, and traveled extensively around the world. I am better for surgery. I can make travel plans and keep them because I know that UC is not going to derail me.

Life is not the same as with a healthy colon but it sure beats life with the unpredictability of UC.

Sue

I battled UC for 10 months before having surgery. I too was scared of the bag, when I woke up the next morning, I felt like a new women. For the first time in months, I didn't feel sick - that was huge. I would take a bag over UC any day.

That being said, I was more than ready for my takedown in December. I am almost 4 months post-op and there are many days I have a BM before I leave the house at 7:30AM and don't go again until after lunch (1:00PM). The urgency is gone, I can hold it if I want. I no longer have what I called "Death Poops". BM's so painful I was in tears and throwing up.

Due to UC, I had to work from home because I couldn't risk making the drive downtown. Now, I go into the office everyday.

Surgery gave me my life back, gave my husband is wife back, and gave my daughter her mother back. We just took a 6 day trip to FL by plane which included a 4 hr car ride - I did great. Everyone who saw me was amazed on how good I looked. This was my 3rd trip to FL since my takedown.

Marnie

had the same issues dealing with UC for 10 years. Had the bag and shuttered for the three months, was glad to have it removed. The3 months though, goes by quite quickly, and is much better to have it, then to be as sick as you are..

In regards to how many times I use the bathroom, all depends on the routine I get myself into, and what I eat that day. Typically, around 4-8 times, and I'm less then 12 months from when I had my take down. I just started working out a few months ago, vary active with my two kids, and eat about 99% of what I want. I stay away from sugars for the most part, sodas totally, have been eating more and more veggies and seem to be doing fine!!

It's vary natural to have a hesitation to the bag, I did in a huge way. But the ones spirit adapts if you allow it to, and after a week or so, I learned to deal with it, and if I had to go back to it, I would be at ease with it. It's far better then dealing with the disease!!

Wish you the best, this site is AMAZING for questions, answers, and allowing yourself to get the right info to complete the process of getting better...

I do not envy your decision. I had no choice I was in the hospital and they told me I had to have surgery. I had a three step process and was very sick going into first surgery. It is not a easy process and everybody has different recovery times. I was 32 when I had first surgery that was 11 months ago. It took me 4 months after my third surgery for the urgency to go down, I would assume that is because the pouch is growing and adapting. I now go 6-7 times a day 2 of those in the night and I can hold it my whole shift at work no problem I tend to go more at night. After last surgery it was 13 times a day and I really had not very much control but with time it got better.I lost 25 pounds but I was really sick going into all this. I gained it back within 7 months after 1st surgery. I had the bag a total of 5 months and you do get used to it, I did not love it, and the scar that was left by it is my least favorite of all my scars but I felt healthy with the bag and that was such a relief. I'm glad I had it done because my UC did not even go into remmision.

I completely understand where you are coming from ,but you have stay positive and know that the bag is only temporary. We all had the same fears going into surgery and for the most part we all came out happy with the outcome.
I had my surgeries when I was 21 (8 years ago) and would do it 10x over if I had to.
You might not see it now, but the day after surgery you will feel what it's like to be healthy again. I was diagnosed when I was 13 and did not have my surgeries for another 8 years, nothing is worth living life that miserable and sick. I do not wish our illness on anyone.
Just stay focused on the long-term outcome, which is your take-down surgery within months of your first. Stay positive and stay current with all of the medical advances for our illness.

(Tip 1)-drink lots of fluids post-op, we dehydrate very easily.
(Tip 2)-post-op with the bag.....before you change your bag in the mornings, eat a marshmallow and wait about 10 minutes. You are probably wondering "what the hell is she talking about", but just put this tip in your memory bank and you will understand it when the time comes.
(Tip 3)-Know that there will probably be bumps along the way, but things could always be worse.
Take care, good luck, and be healthy.

I'm between my two surgeries, had the first Jan 12 and take down is scheduled for April 6. The first month was tough, no lie. But then I started to feel good for the first time in a looooong time.

Prior to my surgery I was reading here about all the folks who didn't mind the bag at all, blah blah blah ... the bag SUCKS. But it IS temporary and I have no regrets about undertaking the surgery.

I lost about 20 lbs since the surgery, but I let myself put 10 lbs over the holiday season knowing I was going to be losing more than that shortly.

If you've tried all the medications and they're not working for you, you don't really have much choice. The surgery has a very high satisfaction rate, just take care choosing your surgeon.

Meesh62

I appreciate everyones feedback.

One thing I dont' think I was clear enough about is that I don't feel that sick. I have energy, I eat whatever I like, I sleep a normal 8 hours and feel fine, currently work out and exercise. The only problem really are my sudden urges. And like I said, they are usually worse at night, when everyone likes to be social.

So I'm basically just trying to compare my current situation of frequency/urgency with that of post surgery. Of course when I come off the prednisone in a few weeks, things could potentially flare back up, in which case I'll probably have to do surgery because I can't keep going on and off prednisone forever without some very bad side effects down the road. Wish I could stay on it though, high doses of that stuff makes me feel a lot better.

You don't have to spend much time on the internet to find out how bad prednisone is for you. The list of potential side effects is long and very scary. I read in a couple places that it would not be approved for human use if it was discovered today. This is what I tell most people who are on the fence about surgery. Set yourself a timeline goal of about 4 months. Try any med and any diet and any procedure you can think of that will allow you to good health and be off of prednisone. If you find something that works, go ahead and put off surgery. If not, then set up a consult appointment with a surgeon.

Whatever you do, don't ride the prednisone rollercoaster for too long. It doesn't end well.

I'm 5 months post takedown and my frequency is 7 times a day. Unlimited diet and no meds other than products to slow me down like Lomotil. Working out, running and living a better life than when I had UC.

Keep asking questions.
Dave