Im not the average person on here, I go 5-7 times in 24 hours, I eat every thing that I used to. but raw onions way to much gas. i can go twice a night or not at all. I was not sick when I went under the knife it was a premptive strike. I have had my pouch for 10 months I was back to work with in 3, I never will go back to full time Military but got a job with a rail way contractor. you are what you make of your self. if you dont give up, you will not have any issues.
Murray

I'm not sure who gave you the idea that j-pouchers have restricted diets. We can eat anything we want to. I choose to not eat or drink certain things but this is my preference (I don't drink soda past lunch, for example, or it will get me up at night due to carbonation; my daughter can drink it as late as she wants to). So yes, there are things you may choose to avoid, but nothing that is really restricted under normal circumstances.

I would be worrying more about the constriction the doctor is seeing and about getting as much proof of UC as you can. How does he / she know it's not Crohns? If you have Crohns a pouch may not be a good alternative.

Bathroom trips for me are about six / day, and I have been averaging 0-1 times a night out of those six. And yes, there may be an adjustment period. However, if you are not very sick going into surgery you should expect a faster recovery and return to work, and a shortened "adjustment" period, in my experience.

It is hard when you have managed your IBD for a long time. I managed from age 12-35. However, at 35 I ended up in the hospital and was forced into surgery. That is not the way you want to go into this surgery if you can help it. The healthier, the better. Off all steroids for as long as possible prior to surgery. The keys are an experienced, successful surgeon. And as a bonus, if you can find it, laparoscopic surgery is preferable.

Ultimately it has to be your choice, along with advice from your doctor. Just don't wait until you are forced into it. If your UC is manageable, it's hard to even consider this option. And honestly, life may seem worse for a time with a pouch. But if you have ever had a flare up, life with a pouch is way better.

Steve

I also eat whatever I want, though I'm moderate with gassy foods. I sleep through the night at least 90% of the time. I go to the bathroom 4-7 x/day. For me the chief benefits of the J-pouch are that the pain and urgency of IBD are gone. After eight years or so I had to go on antibiotics continuously, since in my case the pouchitis won't stay away otherwise. I could choose to sharply reduce carbs in my diet and potentially eliminate the need for antibiotics, but for now I'm happy with this tradeoff.

Do you know specifically why your doctor is so adamant? It sounds like you're feeling fine and (at least currently) are on acceptable medications. For some folks the long-term cancer risk is enough to motivate surgery; for some it's the debilitating effects of steroids; and for some it's a matter of waiting until there's no alternative (but the surgery is much tougher then).

Another happy j-poucher here. The only one food that I do not eat (besides junk food and other crap) is apple peels. I am almost vegetarian, in that I eat way more fruit, vegetables, and nuts and beans than meat. At least that is what I try to do and what makes me feel healthy. So don't automatically think that you won't be able to eat whatever you want afterwards. I had a one-step open j-pouch surgery with amazing results. I go between 3-6 times per day. And once during the night. In the spring my pouch will be 18 years old!
No one can predict your outcome, but you should be aware of worst case and best case scenarios. Any which way life will go on and you will adjust.
Good luck with your decision.
CJ

With my J Pouch, I can eat whatever I want. But I still have to use good judgment since some foods are friendlier than others. Last night the Xmas dinner I had was a mistake and I was sorry I consumed it. I paid the price with countless trips to the restroom.

I'm not sure why she's pushing surgery so hard now. I had a full colonoscopy on 12/2. She biopsied all over the colon and terminal ileum. Nothing from this report suggested Crohn's. There wasn't any evidence of cancer or dysplasia in the pathology report. I haven't seen her since the path report came in. She just referred me to the surgeon.

I want to say I don't believe her, but she's my third GI, the second to tell me I should have surgery, and an IBD specialist at a University hospital. I trust her, and I don't think she would send me for unnecessary surgery. She said I'm 'out of medical options' but I can name quite a few drugs I haven't tried. I don't know what I'm buying by trying more drugs, really, except time. Nothing has really worked. My son graduates this spring. I'm on the fence - I could be 'healthy' by May, but will all of that surgery & recovery mess up his last semester?

I'm meeting the surgeon on 1/17. I can at least listen and ask questions. I know they typically do two step procedures here.

I just read your med list at the bottom. Looks like you've tried all classes of UC meds, and they are minimally effective (meaning you flare and require steroids). Also, the combination of Imuran and biologics (Remicade) has been labeled as an increased cancer (lymphoma) risk. When my daughter was in the hospital they told us they used to treat kids with both but will not under any circumstances now due to the risk. Both suppress immune function and increase that risk. That may also be what has them nervous.

Also, if you are happy with your surgeon there, great. But if you want the best in MO, send me a private message. My surgeon here in KC is thought of as the best in the region. She is awesome!

Steve

You are doing the right thing by going to the surgery consult at least. I have to say you just don't sound ready for this at all. You need to be in a good mind set to go through this surgery because it's a huge thing. I believe you have to be ready for it. When my time came I was so eager to have this procedure done. Maybe because I was so damn sick but I tell you what, my recovery would have been easier if I hadn't been so damn sick. I wish I hadn't waited so long (I put it off for two years) because I only got sicker and sicker. Think about this carefully....it's so much better to have it done when you are feeling good and not knocking at death's door.

The trickiness here is that the level of misery that's sufficient to prepare us psychologically for the surgery is very different from the ideal physical status when we get surgery. There is no perfect answer - just do your best.

I wouldn't discount the idea of your surgical consult being a second opinion on surgery, too. I had consults with two surgeons and only one of them thought I needed surgery. To be clear, they were both more than willing to do it, but one of them said he thought I could wait and try more medical options first. Surgeons probably tend to recommend surgery more than GIs but they certainly don't always blindly recommend it.

I eat and drink whatever I want, whenever I want. I'm enjoying my nightly martini "as we speak". I usually stop at two because I'm out of it if I drink more than that! Some foods may be a challenge but I don't even think about it because once the culprit food is out of me....that's the end of the "challenge". I can live with short bouts of discomfort. I can't even tell you which foods are troublesome for me because I don't care! If I want a certain food, I eat it! I've had my J-pouch since 2002. Actually, I had it in 2001 but I chose to wait for a year before I had it fully functioning (the takedown). I had the surgery in two steps. I felt so healthy after Step 1 that I chose to keep my ileostomy for a full year. Never thought I'd feel that way about having an external pouch! Best of luck in making a decision for yourself!

Well, no, I'm not ready

I went from perfectly healthy to here really fast. I just got diarrhea that wouldn't go away in March of 2011. The first 15 months I had no idea I was looking at a chronic illness because my first GI would not diagnose me. Now I know she was wanting better data so she could say if I had Crohn's or UC, but I spent the whole year waiting to 'get better'. I thought I had food poisoning! (My first scope showed inflammation in the cecum, but no ileum involvement, and she likes the IBD panel blood test that showed nothing.)

I finally got so sick that my PCP called my second GI and said she'd better put me in the hospital. My hemoglobin was around 8, and I worked the whole day before I went to be admitted. This was just in June of last year.

My second GI suggested surgery a year ago, and then referred me to my IBD Specialist in February of this year when she knew she was out of her depth with my case.

I was on 60mg of prednisone when I went to my current doctor in March. She's got me off of steroids and 'stable' here, but nothing has touched this persistent ulceration, and she doesn't think any more experimenting with other drug options will really help me. Honestly, I sometimes think she's been prepping me for surgery this whole time. I've never had an office visit where it didn't come up.

Part of me is definitely still waiting to 'get better'.

I was sort of talking to my boss about this today. She was shocked when I said what kind of surgery I was facing. She has two friends who are cancer survivors with permanent ileostomies. One has since passed, and the other never really goes out anymore. She has a very negative impression of the surgery, and she kept apologizing to me that I had to think about this at my age. (She's just a few years older than me.)

Well, neither of your boss's friends fit my definition of "survivors." In folks with confirmed UC and in otherwise good health the large majority are glad they had J-pouch surgery. I don't know the satisfaction statistics for end ileostomy - it's less complicated but for many is psychologically fraught.

If you were still stuck on 60 mg of prednisone I'd be pushing alongside your doctors - the risks would be significant. With less destructive meds the key risk of delay is that you could get very sick, very fast. Sometimes that means the wrong surgeon opens you up. If you're more comfortable taking that risk than having the surgery earlier than absolutely necessary, then it sounds like a well-considered choice. I do recommend that you listen carefully to your doctor's explanation of why she feels so strongly about surgery. Perhaps she believes the simple, compelling idea that "colectomy cures UC," which is an often-repeated exaggeration, and ignores the trade-offs.

The good news is that she now knows I'm really sick, not 'she doesn't look sick'. The bad news is that I thought she was going to cry. Awkward!

Don't think their are definitive answers to your questions because all of us have ended up w/ different results. Btw, from my perspective, your quality of life is pretty good considering you have UC. I was in horrible shape w/ UC which is why I opted for a Jpouch. I LOVE my pouch. It has given me back my life. I go to the bathroom, on avg 2-3 times a day. If I eat more, I may go more and if I eat less, obviously, I'll go less. It's no big deal. I don't HAVE to go when I go-I can hold it forever. I don't go during the night, at all (on or off of the toilet). When I had UC, I was up 3-4 times during the night. It was brutal-I don't miss those nights! As for my restricted diet, I don't have one. I eat whatever I want to. I will have extra gas if I eat lots of garlic or onions but that doesn't stop me from eating it. Everyone is really different. I am almost 4 years post surgery so I am in a different place than I was right after the surgery but I am as "normal" as most w/ a colon now. 1st year post op I took it slow & tested out my pouch & by year 2 I realized I could eat it all. That's just my personal experience and I know there are others that are not as happy post-op so it is good that you are getting various opinions here. Recovery is tough, really tough. Since you're doing fairly well I'd suggest you hold off on surgery. When you say "your doctor" wants to have surgery now, are you referring to a surgeon? They seem to be in a rush which is the complete opposite of my docs. Years ago, before I had the surgery, my internist told me that I didn't need the surgery...yet. I had no quality of life & no drugs, even prednisone, put me into remission enough for me to live normally. I just never knew when I would need to run to a bathroom. Anyway, I made the decision myself to have surgery while I was fairly young (40) and in pretty good health. I didn't want to end up w/ emergency surgery. I can understand if that's why your doc is pushing surgery but you're doing pretty well. Just my 2 cents. I wish you the best w/ this tough decision. Btw, get names here of top surgeons in your area. Mine was Jeffrey Milson in NYC & I strongly feel the surgeon makes a huge difference. Dr. Milson is the best- if you're in NYC area. Best of luck.

I was ok with UC for 18 years. It was manageable. Then in May 2012 I crashed bad. On June 18,2012 I had a total proctocolectomy with temporary bad. I had a two step procedure. Second step in November 2012. This makes me just over a year out. It was by far the best decision made. I lasted 18 years with UC but when it went bad it went very bad very fast. Had I to do over I would have had surgery sooner. Due to complications I spent 3 ,on this in and out of hospital after my first surgery. I hated my bag, hated it. Really hated it! Now after step two I am good! Still it now has been a year and it is good. I eat what I want when I want. I do get butt burn still occasionally. Easily managed whith calmoseptine or balm ex or vasoline. I go on average 3-6 times a day. I take Imodium (1) at night so I don't go and do sleep. If I don't have access to a bathroom I take 1 Imodium. This beats 8+ Imodium and the extreme urgency of UC!
So all this to say, it has been a long hard road. But definitely worth it's your doctors may be trying to get you into surgery before it becomes a matter of extreme urgency, like mine was. I went from fine to needing surgery that was scheduled ASAP, on emergency. Scheduling and planning is much better! It was worth it for me.

It is your decision on what to do. I had UC for 2 years and by the end of the 2 years my colon was ready to burst. I had an emergency colonostopy and had the j pouch put in. 2 months later I had my takedown. I live a pretty normal life now. I go to the restroom about 4 or 5 times a day and once at night. I eat anything I want, in fact I just had lunch at Chippoltes Mexican diner and it won't affect me.
I try to avoid greasy foods but shouldn't everybody. peanuts will hurt a little if I don't chew them well enough. It all depends on the quality of life you want. I thank God everyday for allowing me to have the pouch.I am 60 yrs old, in great health and had my pouch for 4 years now. Before surgery, I was down to 110 lbs, Now I weigh 162 and feel great. just ask yourself this question, what do you want out of life!

Well, tomorrow is the big day.

I decided on my vacation that I do not want to have surgery now. I am trying to keep an open mind, but I feel like I am only going to appease my IBD specialist in hopes she'll keep me on as a patient.

The whole concept of surgery does not fill me with hope, but makes me very sad and defeated feeling.