Lots of questions!

Hi everyone. Hope your health is well! Time for a novel-length list of questions from a potential newbie.

After failing all meds for UC (5ASAs, Imuran, Remicade) and being unable to get off of steroids for nearly a year, I’m almost certainly facing surgery, and will be scheduling a date in the next day or so.

I’ve gone through a LOT of emotions, as I’m sure many of you have - anger that I’m sick and yet still have to go though surgery and recovery, fear (and I’m sure there will be more of this as the date is set and draws closer…), hope that I’ll end up with a better quality of life on the other end of it all. I’ve pretty much accepted the fact that I’ll do through with this, though there’s moments of “But…but…what if some random thing works?”. Honestly though, the chances of that are pretty much non-existent.

I’m very confident in the surgeon I’ve picked, he has a ton of experience and excellent reviews.

Because I’m quite young 26, male, and slim, the outlook seems good and the plan is a 2-part J-pouch procedure, non-laproscopic.

A few questions for those that have gone through this - of course your experiences won’t be the same as mine, as it’s all individual but…:

1) BMs post-takedown / Bag empties a day - This is the big one. I know frequency generally decreases as time goes on and the pouch learns how to work. I’ve heard 4-6 is average, which seems manageable if there isn’t any urgency (I’ve almost forgotten what that’s like!). I’d be overjoyed if I could take a day trip for mountain hiking - or do some world travel. Are things like that manageable with a pouch, or does increased frequency over the “still-coloned-masses” throw a kink into outdoor activity?

2) Stool consistency - With no water being removed, what’s the end result?

3) Fatigue - The second big one. Fatigue is my major enemy. Seems to be a combination of meds, UC, anemia, malabsorption, depression; a whole host of issues. I’m told that it should improve after the inflammation caused by my colon is gone, but worried that it won’t lift after everything. Did you notice more energy post-surgery? It seems like this foggy, fuzzy feeling won’t ever leave.

4) Food - I love food! I eat a lot of salads, and for the last year have missed big family dinners and the (very) rare Indian buffet. I’d love to be able to not worry about what I eat again! Though I can’t imagine the end result of spicy food with less intestine… :/


Any input is hugely appreciated!

I'll second what Marianne said above.

Before I get to your questions, WHY are you doing the procedure non laparoscopically? Is it something about you that makes an open surgery necessary, or is it just that your surgeon prefers non laparoscopic? I would think long and hard about that. As a young slim person, unless there is something else going on you are a good candidate for laparoscopy. open surgery is much harder to recover from and the larger incision is more prone to complications and wound healing issues.

1) I'm five weeks post takedown and I average six BMs per day, typical range is 5-7. A normal day for me is to wake up and go to the bathroom (like most people :)), then go again in late afternoon, once more after dinner, once right before bed, and then one time in the middle of the night. Sometimes I go more frequently as "insurance," for example if I'm going out for a run (yes, I'm five weeks post takedown and I can run!) I will empty my j-pouch beforehand whether I really need to or not, just to be more comfortable, mentally and physically. It seems like most people report decreased frequency over time but this is a schedule I feel I could live with forever so I'm not stressing.

I do think this is a bit easier to adapt to for women because if I wanted to go on a day hike or outdoors trip, I would know that I'd need a toilet a few times during the day even if I still had my colon (to pee) -- men I guess are more flexible about peeing standing up, etc. Either way there are definitely lots of j-pouchers who are active and there are ways to make it work.

2) Common misconception. The colon's main job is to remove water from your waste, but actually the small intestine (even in a healthy person) does about 80% of the water absorption. When I had an end ileo, meaning I had no colon but all of my small intestine, my output was quite thick -- toothpaste is a fair comparison I'd say. Definitely more "formed" than anything that ever came out of my colon when I had UC. Likewise, depending on what and how much I eat with my j-pouch, my output can be fairly thick. Sometimes it IS pure liquid but that's usually only if I eat something that speeds up digestion (like a lot of sugar) or if I haven't eaten in a long time (sometimes my first morning BM is liquid because everything I ate the day before has already passed).

3) I felt very fatigued when I had a loop ileo (that was Step 2 for me, for a two-stepper that would be Step 1), but after takedown that problem resolved pretty quickly. I still need more rest than most people, but I feel good and I don't feel "foggy". I had three surgeries in seven months so I know I need rest and I believe this time next year I'll be good to go :)

4) I *LOVE* food and I LOVE Indian food! After the first surgery I was able to go back to eating 95% of all my favorite things (popcorn and very fibrous stuff like celery sticks -- yes I love celery sticks -- you need to be careful with, though I have had both). Earlier this week, five weeks post takedown, I had an "Indian feast" (OK, I just forged myself on Indian take out, but calling it a feast sounds festive). Getting to eat again is one of my many favorite things about my outcome from surgery.

Oh, and PS regarding spicy food... my surgeon told me from the very beginning to not be afraid of food and that's my attitude. I eat what I want as long as I know it won't physically hurt me (again, sharp or fibrous foods can cause blockages, so that's where I'm a bit careful) -- that means sometimes I have excess gas or my stools are liquid, and, I have experienced spicy food with no colon. It's not FUN but to me it is worth it. Your skin toughens up with time so my attitude is that you have to just get right back on the horse... if I keep eating spicy food, I can probably look forward to a future of having less unpleasant results :)

I was always tired with UC. I am 6 weeks post takedown and have so much energy now! I had 3 steps, and felt great after step 1, but lost my energy with the loop ileo in step 2. But I feel awesome now. I eat anything I want, although I do notice a few extra bathroom trips after certain foods (my pouch isn't a fan of Chinese cabbage in egg rolls apparently). I go when I wake up, mid-morning, late afternoon, after dinner, once on the evening, at bedtime, and usually once overnight (7 times total). Sometimes though, now that I'm back at work, I'll only go once during the day. If I drink a lot of fluids and have to pee a lot, I usually empty my pouch then too, but it's not a big deal and takes no time. Honestly, the only time I spend more than 2-3 minutes in the bathroom is first thing in the morning. Not getting much reading done these days ;)

Alison - are you on a bowel slower now or did your number of trips decrease on their own? I remember when you were going like 16x/day!!

I'm in step 2 of 3 (loop ileo installed 3 months ago -- waiting for takedown) and I will echo pretty much what others have said here.

I was barely functioning before my surgery -- very similar story to what you described. Failed all meds, chronically anemic, never in remission since my diagnosis in 2008. The first stage surgery (laparascopic end ileo) was a revelation. My only regret was that I didn't do it sooner! I functioned so well it was only then that I realized how sick I'd actually been all those years.

It's been another story with the loop. The problem stepchild of the ileo family, as my ET nurse put it, and truer words were never spoken. That surgery was open, I was in hospital 12 days, my wound hurt like hell, the stoma site was raw and irritated for weeks afterward. Only the caring and frequent ministrations of my incredible ET nurse got me back to the point I had been at pre-second-step. And actually, as others have mentioned, I'm still not there. I think I'm about 80% all the time, still battling some fatigue and stuff. But I eat pretty normally (I avoid corn and tomato juice).

I look forward to the takedown and resuming normal pouch-free life. I confess I hate the pouch, but I've gotten used to it.

My advice to you is that if you've failed all meds and you feel like death, you'll never get better. Sorry to say it, but if all signs point to surgery, you need it, or you'll be sick for the rest of your life. This disease is nasty, and the docs still really don't understand it, though they've found ways to manage it. Good luck!

Busted Guts - Cool name!

As far as j-pouch, I can't answer that....i chose a permanent illeostomy after having dealt with UC for over 15 years...

Which brings us to - you are absolutely right to get surgery...I was on prednisone for 7 years straight after trying everything...If I had a brain then, like you do now, I might have stopped and said "I need to have surgery" LOL!

Also, like you, I kept reading about possible cures for UC, to no avail.... - I do believe, based on some cutting edge gene reserach, in 20 years time, a treatment (not cure) will allow people with UC to live 'normal' lives - sort of like people with high blood pressure/diabetes....

You are making the right decision, and being 26, assuming you plan to have surgery this year, when you are 28 (again, I can't speak for j-pouch time/healing) you will be living a new life.

Also, to repeat what someone else said about our old friend prednisone, I had to get back on it for 3 months (5 months after surgery) because they took me off to fast...it actually took me almost two years to feel normal after the surgery - my surgeon said my body was on the two year plan (6 months to 2 years for recovery from the illeostomy). Since you are only 26, and have not been on prednisone "that long," you will recover much faster.

God Bless!