Takedown Info

[Surroundedbylove]

You're all welcome. I did the thread after Eric (brownbagger) did his partly for those reasons. I couldn't find much on the web for those of us with colonic j-pouches and I wanted to be able to help from experience.

Here is my update - close to 11 months now:

I usually have two, occasionally three bowel movement "episodes" a day - that's how I like to think of them. In the morning, usually one after coffee/breakfast. In the evening usually one bowel movement after dinner and then a "clustered" bowel movement after that. Sometimes the clustering feeling I can tell is coming and all it takes is to wait a bit on the toilet or simply stand up, change positions, and sit back down again and it all works pretty normally. I have found most of my trigger foods (insoluble fibers other than in moderation, larger quantities of tomatoes, spicy foods, onions in particular) and simply try to moderate the consumption of them or choose to eat them when I know I'm going to be home for the evening and on a weekend where it doesn't keep me up at night. When I do eat the trigger foods, I will have quite a few more bowel movements but Imodium will usually calm that down.

I continue to eat a yogurt a day. I rarely take Imodium now - just with those trigger foods and sometimes preventatively if I'm going to be on an airplane or a long car trip.

All in all things are good!

[sguerra@sah.com]

My husband is getting ready for the takedown surgery in a couple of weeks. He will need more chemo after the takedown, has anyone else had to do chemo after the takedown? Thanks, Sandy.

[Surroundedbylove]

Hello all,

Well, a final one-year follow-up note. I am doing well and hope that this provides some hope for others as they adapt after a colonic j-pouch takedown. I probably have one or two more bowel movements a day than I did during my "before cancer" healthy days. These usually are simply a bowel movement when I am otherwise going to the bathroom. I do have certain trigger foods that are apparently trigger foods because of radiation damage to the tissue. Those will always trigger more bowel movements - urgency and frequency. If I avoid the triggers and stick with a fair amount of soluble fiber then honestly, nothing about my post-take down new "plumbing" holds me back from doing anything.

This forum has been a wonderful, wonderful support place. Rectal cancer is so much rarer that it is hard to find support groups with a fair number of people to share experiences to learn from. Without a place like this where I felt like we were all able to share everything so that we could really learn from each other - good and bad - I would have been devastated during my cancer battle and frankly would have been clinically depressed. This forum saved me many times from going down that path.

I wish everyone who battles colorectal cancer - whether as a patient or a caregiver - the very best.

Signing off,

SBL

[adina91]

Thank you SBL! This thread has been a huge source of information for me and i have read through it more than a few times. I'm so glad everything is great for you a year later! I hope to follow suit.

[GreenLakeGirl]

SBL, I bookmarked your posting and sent the link to several people, so thank you for taking the time to write up your experiences. I've debated writing up my ileal experience (I'm 12 days out now), but my horrid hospital experience would color my version.

Thank you!

[Surroundedbylove]

Just a bump up as quite a few people have takedown surgeries approaching.

[Surroundedbylove]

Update -

I used Activia for quite awhile as you see above. In the end, I didn't like the sugar content it had and I preferred plain Greek yogurt with my own fruit added and probiotic powder prescribed by a naturopath. That's my routine this days in terms of yogurt. Keep in mind Dannon's fine regarding Activia and unsubstantiated health claims too.

[wifeandmom]

Thank you so much for this chronicle of your takedown experience. I am hoping to have mine this coming Thursday. I've read this "journal" and have been so grateful to have an idea of what I might encounter during recovery.

[Surroundedbylove]

Hello all - well, I thought I'd post that even a year and a half out from takedown surgery I find new things that seem to help the little challenges! I generally feel well (in terms of the post-takedown adjustment). I occasionally still have clustering though. I recently learned that if I use a child's step stool to elevate my feet when sitting on the toilet that I am able to evacuate better and have less clustering. As most of us learn, adjusting the body position - standing up, sitting back down, moving around - tends to resolve the clustering issues. This is another tool to add to the toolbox!

SBL

[juliej]

I recently learned that if I use a child's step stool to elevate my feet when sitting on the toilet that I am able to evacuate better and have less clustering.

It sounds like elevating your feet gets you closer to the "squatting position." There's a lot of research showing that human physiology is better suited to the squat. After all, for most of human history, we squatted. I squat when I'm out camping in the woods and bowel movements just seem to happen without pushing. That may be making it easier for you.

Thanks for updating your thread. It's great info for a lot of people!

[GreenLakeGirl]

There was a Slate.com article last fall about that: http://www.slate.com/id/2264657/, entitled Don't Just Sit There! How bathroom posture affects your health.

I usually don't have to help things along with my ileo j-pouch, but it was nice having a child's step stool near when I was first relearning to use my reconnected body. The yogurt and probiotics are helping me as well.

[jjlist]

eight weeks out. still clustering, still incomplete evacuations, still neo rectal soreness, still constipation issues.
I am eating small portions, low residue soluble diet. no metamucil or fiber or immodium. around week 4 i believe the metamucil or the immodicum constipated me bad. i dont want that again.
what am i doing wrong?
should i reintroduce metamucil or high fiber or immodium?
jim

[BrownBagger]

eight weeks out. still clustering, still incomplete evacuations, still neo rectal soreness, still constipation issues.
I am eating small portions, low residue soluble diet. no metamucil or fiber or immodium. around week 4 i believe the metamucil or the immodicum constipated me bad. i dont want that again.
what am i doing wrong?
should i reintroduce metamucil or high fiber or immodium?
jim

I wasn't that much different at 8 weeks. It takes a long time for things to balance back out. Constipation is something I certainly battle on a daily basis, mostly with Metamucil.

The clustering and incomplete evacuations persist for quite awhile as well, but they get gradually better. I still cluster, but now it consists of maybe 3 or 4 sessions over the course of an hour to get it all done. So, not so bad. But when I was 2 months out, more like what you're experiencing.

If I were you, I'd try the Metamucil again--with lots of water. It has helped me considerably. I never felt that the Imodium was causing constipation for me. All it seemed to do was slow the digestive system down and control the frequent urges.

Good luck!

[Surroundedbylove]

Hi all,

I've taken a break from the boards recently and it has helped me to focus more on living life. Please know that I care about everyone here very deeply and I worry when things aren't going well for someone and rejoice when they are going well. I am challenging myself to take some more breaks from the board though - for my own emotional health. The last two weeks I thought much less about cancer and it's impact on me post-treatment than I have in the last year and a half. So - that's the reason for the challenge of another break. Anyone who wants to talk though - please do PM me as I'm still around and still care.

So, before this break I thought I'd give a "final" update on my reversal surgery/takedown surgery. I'm now 20 months out from the surgery and really feeling good. When I have a bad day I can attribute it to lack of soluble fiber and certain foods that simply don't work well with my radiated colorectal tract. The list of foods is still relatively short and some things I can eat but just in moderation. All in all I am dong very well and happy I had the surgery.

SBL

[Surroundedbylove]

I have to add to this thread - so not quite final like I thought above!

Recently I had to start taking Entocort EC (budesonide). Oh my gosh - huge, huge difference for the colorectal tract post radiation. I asked the doc about it (that wasn't the reason I started to take it) and he thinks that basically the different foods that set off the digestive tract are because of radiation induced colitis. Entocort EC is a steroid that isn't systemic - it bypasses the stomach and is absorbed in the intestine. It has completely changed by bowel movement patterns and eating patterns. If you've read through this entire thread you know about tomatoes, chocolate, and leafy greens setting my digestive system off. So, now, here is where I am with the Entocort EC:

Sample menu and bowel movement day after I realized the change:

Breakfast - shredded wheat with berries and milk
Lunch - Large mixed green salad with lots of tomatoes, leafy greens, onions, dried fruit, and asparagus
Dinner - Fish, sauteed kale and spinach with onions, sweet potato, triple chocolate cake

One - yes only ONE - bowel movement - about one hour after dinner. I can't believe it.

So - if you are a ways out from takedown and experiencing ongoing urgency and frequency with diarrhea tendencies, you may want to discuss the possibility of Entocort EC with your docs (the gastro docs might be the most familiar with it). It is expensive but I LOVE being able to basically eat unlimited amounts of tomatoes and green leafy vegetables again.