Takedown Info

[Surroundedbylove]

Hi all,

One of the great people on the uoaa.org discussion board found a working link to a copy of the MD Anderson Bowel Management Training Program that many of us are doing or have done. Here it is. YOu might want to print it if you think you might want to do it now or in the future - who know how long it will be available online!

http://www.lowrectalcancer.com/PDF%20Files/Bm%203.pdf

[Surroundedbylove]

And one more tip - following up on my discussion above about my surgeon's recommendation for a high fiber diet - he specific encouraged high soluble fiber. We need both soluble and insoluble but he thinks in helping adapt to the j-pouch that soluble fiber in particular will help.

[Surroundedbylove]

Day 14 Update

OK - I forgot to take my own advice! Too much insoluble fiber (big Crab Louie salad - oh how I missed salads when I had the ileostomy) followed by molten chocolate cake for dessert results in too many BMs and diarrhea. The payback for attempting to go out on the town with friends........The Day of the Revenge of Salad and Chocolate.

Seriously though - I was risking it and should have thought more about the repercussions. What I have learned through these last two weeks is that I really need soluble fiber at each meal to bulk up the stool and keep the bowel transit time normal. The richness of the Dungeness crab and the high insoluble fiber content of the salad and veggies with it would have sped up the bowel transit time. Then I topped that off with a treat that is my second experiment with a "serving" of chocolate (as you know from my Day of the Revenge of the Halloween Candy). The chocolate is definitely a trigger for me I'm realizing. It just doesn't work for a dessert anymore for me. I can have a bite or two but that it. In other words, I'm relegated to little pieces of chocolate now and then rather than chocolate desserts. I should have had the apple pie - at least it would have given me some soluble fiber in a dessert format!

So the experimenting with food is at least teaching me things. I am also learning that after an episode like this, Immodium AD does work - it just takes a couple of hours to really stop the urges. I don't need it constantly - I've only used it on the Day of the Revenge of the Halloween Candy and the Day of the Revenge of Salad and Chocolate.

[Kathryn in MN]

I'm glad to hear you are continuing to make progress and learn what works and doesn't work for you. Can't hardly blame you for trying with the salad... and if you can get your chocolate fix in with just a little taste instead of a big dessert, that is better than having to give it up altogether if you don't want to.

[Surroundedbylove]

Day 20 Update

Hi all - so I experienced constipation for the first time post-takedown yesterday. At first I thought it was just some particularly bad clustering but then realized that it was actually constipation. I have never been prone to constipation so I didn't immediately recognize it. It also doesn't make much sense because I've been consistent with my fiber intake. The only thing I noticed that I hadn't done was a missed two days of Activia. Maybe in me the probiotic is a key thing.

So, after a frustrating few hours it dawned on me - what is my best natural laxative (I really didn't want to use one of the suppositories if I could avoid it)? CHOCOLATE!!!! Aha - I now know when I can eat my dessert favorite - when I'm constipated! So I hit the stash in the freezer of those wonderful molten chocolate cakes - one minute in the microwave, five eating minutes, ten waiting minutes and then action! Cleaned out quickly - and only one more trip to the bathroom and I was done for the evening.

So the good news is that be experimenting with both good and bad results early on can help with different symptoms as we progress.

Here's a toast to the Day of Chocolate as Medicine! The other day at the doc I was talking to another of his patient's - she is about my age, same cancer, same timeline for treatment - within a couple of weeks I think. We were talking about my chocolate experiences and she commented that she is a lemon person not a chocolate person. Too bad for her because I'm finding chocolate a good medicine occasionally.

[meeko]

I have constipation issues but I know i dont eat enough fiber...my problem is with IBS you never know how much fiber is okay and when you eat too much....most of my life I have had the runs or not been able to easily go...Chocolate does get things going but sometimes too fast! Maybe someday I will figure it out..........................................

[BrownBagger]

Chocolate may be the cure, but I'm wondering if the cause might be missing the probiotics. I'll be curious to see if resuming your probiotic intake makes the constipation go away.

[Kathryn in MN]

Now don't go skipping your probiotic just so you can have chocolate!

I'm glad you found such an enjoyable solution to the problem!

[Surroundedbylove]

So, another update - I added back the Activia. I also realized I had been doing the 1 oz. of prune juice in the morning for those couple of days but hadn't done it at lunch or dinner. Added that back in too. Now I'm back to some sort of interim normal and the constipation is gone. At least I know though that I can use chocolate "medicinally" if needed!

[Surroundedbylove]

Hi all,

Thought I'd post an update for you. Things have been going pretty well. The afternoons and evenings are still the least predictable but honestly I feel pretty good and can manage and get out and live (still have to be cautious with access to the bathroom in the afternoons and evenings though). I have found the last few days to have a new "weapon" against the difficult evenings. I have started taking two Metamucil capsules with about 2-3 oz. of water right after dinner. Later I will have a bowel movement that starts with a large volume but nicely bulked up stool and then shifts to a much softer stool. The particularly good thing is that I really, really, get cleared out in one seating - no clustering!!!! The hard part is that the timing is unpredictable - it could be an hour later or three hours later. Because of this I don't feel like I could do this if I were going out for the evening but if the plans are to be at home I can do it. Now to venture into the land of perhaps trying this earlier than dinner to get myself some good evening time without being tied to the bathroom.....

[Surroundedbylove]

Hi all,

Bumping this up per a request by PM but also thought I'd add a four month update to it.

Soluble fiber in my diet has been a significant key to improvement. My bad days I look back and realize that I didn't have enough soluble fiber with each and every meal - it helps slow down the insoluble fiber. I have also found that if I take one or two Imodium AD tablets each afternoon (right after lunch or before 2:30), I have a far improved late afternoon and evening. At the time I take the tablets I don't really think I need them, but if I wait, then I'm too late and the clustering begins.

I eat wierd combos now - whole wheat pasta with lots of tomatoes and red sauce, spinach, cheese (for more dairy) - OK that's all normal - but then here is the trick. That alone would have set off my clustering and perhaps caused diarrhea. If I start the meal with a roasted sweet potato though, then I;m perfectly fine. The soluble fiber of the sweet potato is enough to really help slow things down.

Also, I can eat raw and cooked spinach just fine but try kale and wow, my system immediately starts to eject it! I can eat small amounts of cooked kale though as long as I have plenty of soluble fiber with it.

I hope this helps others - I'm sitting at four months out and leading a virtually normal life.

[BrownBagger]

Congratulations and thanks for the soluble fiber tips, SBL. I'll have to pay more attention to that, now that you've done the research.

I'm basically doing fine as well. On a good day, I go once, maybe twice. I still get clustering espisodes, however--always related to something I ate. Most notably, tomatoes. Within an hour of eating most forms of tomato, I get clustering within an hour and it keeps up for the next 12 to 24. Cleans me right out, but takes multiple sessions to do it. I'll have to try eating some soluble fiber in advance next time, because I do love tomatoes in almost all forms.

Ditto with the Immodium. I don't take it very often, and usually one tablet every four hours or so until the clustering/urges pass. Lately, that's been less than once a week.

Six months out I'm still settling into my new normal, but it's definitely making progress and I don't think it will be long before the process is complete.

Anyway, glad to hear you're doing well.

[joeyooser]

Cleans me right out, but takes multiple sessions to do it. I'll have to try eating some soluble fiber in advance next time, because I do love tomatoes in almost all forms.

Multiple sessions - that cracked me up. I'm still chuckling about that as I type. Is this like therapy or something?

Takedown for me is 3 weeks from today and I'm looking forward to it. Not looking forward to hospitalization though.

[BrownBagger]

Mostly, Joey, it's just a matter of sitting around waiting for shit to happen.

The hospital experience for takedown, though no fun, is a lot more tolerable than the operation that got you there in the first place. There's a lot less pain (though no shortage of pain meds), and your energy isn't sapped like it is after they take you apart and put you back together. For me it was more a matter of coping with the anxiety about when my digestive system was going to wake up so I could get the hell out of there. In my case, I spent 4 days and 4 nights in the hosp. for reversal.

The hardest part for me was the first two or three weeks post-op. Just plan to be close to a bathroom for that amount of time if possible. If you read through this entire thread, I think you'll get some good ideas of what to expect and how to cope with it. If not, dig up the thread I started just prior to going into the hospital last summer, Takedown Countdown. Since I had a laptop with me in the hospital, you get the man-on-the-scene report.

[mm66ny]

Thank you for posting this update, and all of the tips. I am new to this Board and so thankful for it. I am about 6 weeks post reversal and nearly broke down yesterday with all the unpredictability and other things that I wonder if any of you experience, such as 1) not being able to tell the difference between whether you only need to pass gas, or actually go poo-poo, and 2) having some poop sneak out at night--that's a new one for me and I wonder if it's anything I've been doing lately. That one's gotten me especially down.

Brownbagger, I have also noticed that pain meds seem to calm my bowels down, but I obviously can't take pain meds too long term. Are you still taking them? or have things calmed down just over time?

I am thankfully able to "hold it" if I need to go and I'm awake.

I am glad to see that many of the things those before me went through, I have been going through.

Most of all, I am glad to see that I am not alone.