Haven't posted since last June, current situation mostly good, some bad.

[Raleigh]

I haven't posted in a long time, not since before June I think. So here's a little back story. I had my illiostomy reversed in June. I had blood tests and my cancer levels were below normal. Then in August I had my last pet scan, and it came back completely cancer free, head to toe. Got my chemo port reversed and Yahoo!! I beat my cancer! so happy! But here's the bads... If anything really could even be bad after surviving cancer.

So I asked my surgeon several times if I was gonna have any issues post illiostomy reversal with my bowels and bowels control. She said, not likely, and I should be fine. Two days before my reversal, last June, my surgeon gave me a colonoscopy, and flushed my colon out with water. After I awoke in recovery, I had an accident, and flushed out blood and watery poo, with no control what so ever. My family was there at the time and asked her what was my outcome with this. She changed everything and said to them that I would recover bowel control between six weeks to possibly two years post my reversal. Sure enough, after my illiostomy reversal, I had NO bowel control what so ever. Also it was particularly painful going, for a few weeks, however that is fairly common, from what I understand.

Move ahead to now, five plus months later. My bowel control is better, but only slightly. I have to run to the bathroom, and If I'm not on the toilet I will go in my pants, usually just a little though. I nearly broke my leg twice slipping on wet bathroom floor whilst running to the bathroom earlier during the summer, and my big toe has since not been the same.

I believe I have what is called L.A.R.S or Low Anterior Resection Syndrome. No doctor ever told me I have that, but after research, I know its what I I've got. I didn't go out of my house barely for the first three months. At this point, I'm getting used to it. I wear depends diapers almost always when I leave the house. I learned the hard way, trying to avoid wearing them till I had an accident at Wallgreens one day. Also if I know I'm gonna be out for more than an hour or something I take immodium at least an hour before I leave the house. I also have something called clustering. These days it doesn't happen all the time, but tonight was particularly bad. From about 6:30 till 11:30 tonight, I ran to the bathroom about 20-30 times. Its like that about once every week to two weeks. I simply cannot go all at once, and end up going really frequently within a short span. Also once I have an episode like that, I know I won't usually go again for two to three days. Realistically, I probably cluster every couple days a week, but some cluster days are easy, while others are bad. Another thing, if I drink alcohol, its a given that I will be running to the bathroom after a while. This is actually good in some ways. If I know I have a lot to do the next day, I can drink a bottle of wine, and it acts like exlax for me, then I won't go at all the next day. Unfortunately, I can't, or won't chance going out drinking with friends anymore, not that I do that anyway anymore, but I wouldn't do it even if the chance came about. I've had blow outs after drinking, that a diaper would not even begin to stop.

So what can I say about all of this? Number one, keep your chin up, it isn't the worst possible thing to have happen, deal with it. If you find yourself in a similar situation, don't stop living. It took me several months before I realized this, buy some depends and get out there, and take immodium if necessary. By the way, I think L.A.R.S. only happens to people with really low tumors, I had colorectal cancer. Secondly, don't eat in excess of gritty foods, nuts, seeds. They will tear you up during a cluster, and become really painful coming out. I say that now, but don't always follow my own words, tonight I can tell I'm paying for it.

I still get worried going out sometimes. In fact next week I'm leaving my house for probably five days, and out of town, due to work. This is the longest I've ventured away from my house as of yet. I'm actually kinda freaked out about this, but I'm just gonna go as prepared as I can be, and see what happens. The guy I'm working for has had brain cancer, and he understands my situation, in fact what he went through makes my colon cancer seem like a walk in the park, stuck in the hospital for nine months, seizures, relearning how to walk and talk, but at least he understands.

Aside from all of this? Well, I met a nice girl I've been spending time with lately. She just got through her breast cancer treatments, and while her doctors said she wouldn't have survived it, if she had the same cancer five years ago, she's on a path to recovery now, and her recent tests show she's in the clear with her cancer.

Try to stay positive people! Cancer really sucks, I know.

[plastikos]

I cant say I know what its like to be in your place and having to deal with what you're dealing with everyday. The most important thing though is you are cancer free. Thanks for sharing.

[cathy123]

Well, first off so glad you are cancer free. That is definitely most important.

I had my reversal in September and can feel your pain. Pretty much clustering daily, without much control if there isn't a bathroom close. I have started taking citrucel 2x a day and I think it has helped - still lots of tiny movements, but the last few weeks they haven't been loose so not nearly as much as painful. (Before that day my system would completely clear itself out in one very painful day, then nothing much for a few days). I tried Imodium and it doesn't seem to make a difference for me.

I am trying to get back to living my normal life. I wear pads whenever I go out. Some situations are definitely stressful for me though. Hope we will both see continued improvement.

My surgeon wasn't a ton of help so far - just said to add fiber and come back in 3 months. I am seeing a nutritionist at the cancer center today so am hoping she will have some tips.

[ams5796]

So glad you're cancer free and that you met someone. That's great, time to move on with your life. Unfortunately, after the reversal is really tough. Most of the time it gets better as time goes by. In the meantime it really takes a toll on our lifestyle. That's why many on here have found a solution in doing a daily enema. There are many threads on here about it and many helpful experts. I know it may not sound appealing, but if it gives you your life back it would be worth it.


Ann

[Maggie Nell]

So here's a little back story. I beat my cancer! so happy! But here's the bads... If anything really could even be bad after surviving cancer.

Move ahead to now, five plus months later. My bowel control is better, but only slightly. I have to run to the bathroom, and If I'm not on the toilet I will go in my pants, usually just a little though. I nearly broke my leg twice slipping on wet bathroom floor whilst running to the bathroom earlier during the summer, and my big toe has since not been the same.

Another thing, if I drink alcohol.....If I know I have a lot to do the next day, I can drink a bottle of wine, and it acts like exlax for me, then I won't go at all the next day. Unfortunately, I can't, or won't chance going out drinking with friends anymore, not that I do that anyway anymore, but I wouldn't do it even if the chance came about. I've had blow outs after drinking, that a diaper would not even begin to stop.

In the spirit of spinning straw into gold.....concerning the matter of your big toe. There's a drinking establishment in
the Yukon that might be able to provide you with a solution. If you are willing to go the distance, freeze your butt off. For
all we know, colder climates may have a beneficial effect on the clustering and intestinal hurry...

Anywayz, google up Sourtoe Cocktail Club.

Now tell your big toe that if it doesn't cut out the crap, you're going to sell it on eBay.

[Raleigh]

Maggie Nell, that sour toe cocktail look fairly disgusting to say the least, however, being the adventurous type that I am, I'd probably try one, in a glass of whiskey. Lol. ....and yeah, if I slip and slam my big toe into the tiled concrete wall again, its being donated, lol.

[kathybrj]

The only thing DH can do to keep his bowels as close to normal as possible after the reversal is fiber. He takes 18 fiber tablets a day- 6 with each meal. This is the only way he bulks his bowels up enough not to have an issue.

[ams5796]

The only thing DH can do to keep his bowels as close to normal as possible after the reversal is fiber. He takes 18 fiber tablets a day- 6 with each meal. This is the only way he bulks his bowels up enough not to have an issue.

That's great. Can I ask what kind of fiber tablets? Do they give him gas?


Thanks

Ann

[Raleigh]

A few people have mentioned fiber and Cathy123 mentioned citrucel, which is also a fiber, bulk builder correct?

My own issues really aren't loose stool though? Isn't that why you take the fiber, and bulk builder? I simply cannot stop the flow when I gotta go, even solid poops.

I forgot to mention. My surgeon told me after that last colonoscopy that she couldn't build a "pouch" which she normally does, she said something about my own anatomy, and it was very difficult to build one? As she had very little room to work with? Can anyone explain to me what she meant? I'm guessing I don't have a space there anymore to hold things back, some what like a persons bladder?

Anyone have any experience or know what she meant? Will that area eventually stretch out, on its own over time?

Would fiber and citrucel even help me in my case?

Thanks in advance.

[cathy123]

Yes Citrucel is a fiber supplement (as is Metamucil). I think the idea is that the fiber should bulk up the stools, and thus stretch the part of our colon which now has to learn to function as a rectum. The rectum is stretchy for storing larger amounts, the colon is not, but hopefully will adjust. My bms are no longer loose either (most of the time) - my problem is 20-30 tiny stools a day. I am hoping that if they are bigger I will have better control (now sometimes they kind of slip out) as well as less trips to the bathroom.

My surgeon originally said he would build something called a j pouch which is sort of a little storage area (I think they turn up the end of the colon before attaching it to the anus). When I ended up having radiation first, he said he was just going to do a straight connection. I never really questioned him in detail about why the change, but he did say that after a year there is no demonstrated advantage of the pouch, and there is more possibility of a leak because there is more sewing. When I went for the second opinion at a NCI center they said the same thing about same function after a year, and said they usually just do a straight connection. It sounded like if/once the colon stretches it will be about the same.

The surgeon also said kegels (basically exercising the muscles by squeezing) can't hurt.

I am definitely still in the figuring stuff out stage. The hardest part is if I have someplace to be where I can't jump up all the time or there is no restroom - I like your bottle of wine the night before solution. Will have to see if that works for me. Definitely sounds better than an enema.

[tammylayne]

I am one of the people that does the daily enema,,,it works and is no big deal to do. About 3 - 5 minutes for the water to go in (totally painless.....can't even tell its happening,) then 10 -15 minutes on the toilet emptying out "normal". Done for 24 hours....almost NEVER go in between. I used to go 20 - 30 times a day. Now,,,once and done. I spend less time "going" then my husband.

If you remember the first week, or two of having your ilieo was probably pretty tough. Then after a little while it became easier. Not saying you liked it,,,, but it became easier and doable. Enema is very similar,,,but MUCH easier. Strange to do in the beginning,,,but here I am 2.5 years later, and I can't imagine not doing it. I feel BETTER then ever inside...nothing feels like it sits...I actually have little to no gas anymore

If I had a choice of going 3 - 5 times a day...or once a day with an enema...enema wins hands down. Why??? Because I have NO STRESS...NO WORRIES about having an accident. And that...is priceless..

PM me if you want more details. I have helped many on this board, I share everything,,,then challenge you to give it 2 weeks to see if your quality of life improves....cause it should not matter how you poo...it should only matter that your life is goood.......

[Raleigh]

Thanks for the information Cathy123, and Tammylayne.

I actually don't have clustering every day, infact I usually only go at all about every second or third day. When I do, its a crap shoot, no pun intended, in that sometimes I cluster heavily, 20-30 time over a 3-5 hour period, but usally its actually less than that, on a lighter cluster day, only maybe 10 times over an hour and a half, and I'm done. I will say that during those heavy cluster days, it's pretty bad though, and becomes quite painful near the end of the clustering episode. It was like this last night, got really painful. I usually get in the shower when things get too painful, cause wiping with toilet paper sends me through the roof in pain. I'd say I have a heavy clustering day only about once or twice a month.

I have given myself an enema before actually, before I even got cancer, as I was clogged up once and didn't go at all for a few days. Pretty easy to give oneself an enema. I wonder if an enema would be good right before, or during a cluster episode?

[ozziej]

Hi fellow reversalists,
Raleigh, thanks for your very positive post. Can relate to some of the issues you have experienced. I'm 5 months out with a straight coloanal connect after ULAR. Has been 5 months of ups and downs with much confusion, frustration, and quite a few tears. However, happy to post that I finally seem to be turning the corner. Sure, it'll never be the same as pre surgery but for me that's not such a bad thing as I used to experience severe constipation pre dx. I used to think my problems post reversal were just because I had a very low join but have recently learned of others with similar surgery who seemed to sail through with no problems, eating normally from the start and no bowel problems. So maybe it's just a lottery? I drove myself silly wondering whether I should have had a j pouch (probably couldn't due to lack of space anyway) until I read that some people with a j pouch have problems with never feeling fully emptied. I have a bit of that anyway but not too bad, so I guess every option has it's positives and negatives. I think it might also depend on your personality. I'm a person who likes things to be predictable and under control, probably not the best personality type to deal with post reversal bowel issues. So all in all I concur with your thread title Raleigh, "current situation mostly good, some bad"
Best wishes
Jan

[dianetavegia]

My friend, Brooks, had zero quality of life due to this so he chose a permanent colostomy a few years ago.

[JDMNYC]

I am one of the people that does the daily enema,,,it works and is no big deal to do. About 3 - 5 minutes for the water to go in (totally painless.....can't even tell its happening,) then 10 -15 minutes on the toilet emptying out "normal". Done for 24 hours....almost NEVER go in between. I used to go 20 - 30 times a day. Now,,,once and done. I spend less time "going" then my husband.

If you remember the first week, or two of having your ilieo was probably pretty tough. Then after a little while it became easier. Not saying you liked it,,,, but it became easier and doable. Enema is very similar,,,but MUCH easier. Strange to do in the beginning,,,but here I am 2.5 years later, and I can't imagine not doing it. I feel BETTER then ever inside...nothing feels like it sits...I actually have little to no gas anymore

If I had a choice of going 3 - 5 times a day...or once a day with an enema...enema wins hands down. Why??? Because I have NO STRESS...NO WORRIES about having an accident. And that...is priceless..

PM me if you want more details. I have helped many on this board, I share everything,,,then challenge you to give it 2 weeks to see if your quality of life improves....cause it should not matter how you poo...it should only matter that your life is goood.......

Hi Tammylayne - not sure how to PM, but I would like more details. My reversal is coming up on 12/11, and, although I will definitely give the old-fashioned approach a try, I want to be prepared to go the enema route if necessary. Please let me know. Thanks.

Jim