Bowel changes + bathroom issues post LAR: tips&advice

[kimmercans]

No ileo for me. My tumor was 9cm from the anal verge. No J-pounch either. I had a direct anastomosis 2cm from the internal sphincters.

I had radiation AFTER my LAR so I did suffer from urgent diarrhea and rectal spasms during that time, but Lomotil kept me functional and working.

2.5 years out...I still have days that I "cluster" and have to stick close to a bathroom, but I have never been incontinent outside of the occasional "shart" while receiving chemo/radiation.

I prefer my new normal to my old normal (constipation alternating with painful diarrhea).

Now...yesterday I had a routine CT Scan and the barium smoothie kept me in the bathroom ALL DAY. But, small sacrifice for close surveillance.

Wishing you the best Greens!

Kim

[Jachut]

I'm going to answer this again since I'm now nine months post reversal and things have settled into some kind of new normal for me. It might be interesting to compare!

For some, Were you given the opportunity to avoid temp ileostomy altogether.?

As I said before, no, that was never a possibility.

For others, Post ileostomy reversal how did your bowel movement change?
over time my digestion has become chronically sluggish and inefficient.

For all, Did you suffer any form of incontinence?

Not at first. No urgency, no accidents. What I do have is soft bowel motions that are sometimes nearly freaking impossible to clean up, I wipe and wipe and wipe and wipe and it keeps coming. And I can be a little leaky sometimes, there's been a few skid marks, unpleasant surprises when I've scratched my bum because it was itchy and I'd go for a wee and end up wiping for ages. This was driving me nuts but has improved a lot since I stopped taking iron. Everything has improved since I stopped taking iron. Its maybe only happened twice in the last three months.

How do you cope with urgency?
dont have it, ever. What I do have is some days of constant false urges to go - they're not urgent but I might visit the toilet ten to fifteen times, with no joy.


How do you cope with stomach/ bowel pain?

I have a problem with constipation more than anything, probably partly to do with having a lapband and not putting as much food in my system as most folk do. I have a lot of days, probably five out of seven where I feel bloated, heavy, a lot of urges to go with nothing there, bouts of gas, and just generally feeling like my digestive system is sluggish and feeling mildly unwell as a result. It doesnt stop me doign a single thing, but it does take the joy out of lots of stuff. Every time I go to the gym, I'm usually in a state of mild anxiety as to whether the urge will suddenly consolidate and I'll ahve to leave a class. I still think about my bowels all the time and I hate that.

I dont have any rectal pain, any pain with bm's (other than having to strain). My bowel motions are not hard or dry, it just doesnt seem to form itself into a decent load that I can eliminate easily and I dont seem to have the ability to push.

I really try not to, really try, because I know laxative use is dangerous, but sometimes I take a dose of Lactulose because I cant stand it, I just want a good clean out and to have a bowel motion that actually feels satisfying. I just cant stand feeling always full but umable to empty.


Have you seen an improvement over time?

If you call this an improvement over the constant uncomfortable stinky gas I had as a reaction to daring to eat a normal meal and a little more diarrhoea, maybe. I cant say I"m all that thrilled with my new "normal" and since I've had little luck with dietary measures or fibre supplements, not really sure what to do about it next.

Since I last wrote on this thread, I have perhaps learned what I can ignore and what I cant. and cut down on the bathroom visits a bit.

Do any of you wish you had had a permanenet colostomy such has you life changed you feel chained to the loo?

I'm not chained to the loo, I'm just not feeling sprightly like you do whem your guts work right. I have reached the point where I wouldnt opt for an ostomy over this though Its only looking back now that I can see how sick, underweight and chronically unwell I was with the ileostomy/chemo combination,despite the fact that I coped well with teh bag. I couldnt have gone on like that and fully realise now why my surgeon and onc were so alarmed at my appearance and why my surgeon wasnt willing to consider not reversing. Obviously a colostomy is a different proposition again, but I didnt have one so dont really know.

Is the LAR or any post adjuvant chemo that causes these changes or both?

Who knows? I thought it was the radiation as all my "symptoms" were a lot more intense five months ago, now I just think my entire system is pretty stuffed from the chemo.

Is your new "normal" manageable?

Yes, for the most part. Sometimes I just avoid going out or doing something. I know a positive attitude is everything, and my surgeon thinks I should be darn grateful to have beaten cancer (who can ever say that really?) and to be continent. However, much as I like to be positive what I see is that I got stuck with this darn disease and now as a result I have to live with a really unpleasant bowel condition forever. I'm not grateful that its worked out like it has, I'm freaking pissed off that it happened at all. I'm not happy and I dont want to be this way and I'm not going to pretend otherwise. I dont see it as any better than having an ostomy to be honest, but if I cant be all greateful and smiling and consumed with the fact that I cheated cancer this once, I CAN accept it, get on with life and not let it limit me. Its not on the same scale as losing a limb or a breast because I can keep it private. And truly, it is a great result that enables me to suck it up and get on with living the best way I can.

[Peloton]

Thanks for posting that Jachut. You and me are at a similar timeframe with our reversals. I'll be ten months out next week. I had a straight coloanal anastomosis for stage 3c rectal cancer. Had a temp ileo for six months (no choice) and the tumor was 4 cm above the anal verge. I guess that qualifies as "ultra low."

I've had similar issues. No incontinence or real urgency after a few weeks post op, but some minor leaking from time to time. Also, I know what you mean about those soft pieces of stool being freaking impossible to clean. But it sounds like you're reaching a good new normal and I hope things continue to improve.

The one thing I didn't see you mention (although I might have missed it), is that I usually had to get up at least once in the middle of the night to have a bowel movement. I would also wake up with a skid mark from time to time. In a given week, there would be maybe two nights, three on a good week, were I slept through the night.

I have now resorted to taking daily tap water enemas and am thrilled with the results. At first, I only did it when I knew I was going to be out all day (like traveling). But I realized it's just too easy. It takes about 30 minutes (slightly more at times, but not often) as part of my morning routine to administer it and I get cleaned out. I'm good to go for the day and have never had any leaks, urgency, or any other problems associated with ileo reversal following an LAR for ultra low rectal cancer. Best of all, I sleep through the night every night without problem.

A few days ago, I was at a cancer fundraiser and they were serving pulled pork sliders, which is my ultimate guilty pleasure (I'm bad, I know). I probably had eight of those, along with a few glasses of wine. Not only was I fine throughout the fundraiser, I was fine throughout the entire night! Slept like a baby.

I spoke to my colorectal surgeon, oncologist (who treats almost exclusive colorectal patients) and GI doctors, all of whom are board certified, and they all approve of a daily enema. My colorectal surgeon said that, while he wouldn't advise a "normal" person to use daily enemas, I'm not normal. My lower colon had six weeks of radiation and then my rectum was removed. The days of preventing harm to my colon have long since passed. He said just to make sure I stay hydrated. A few shot of pickle juice throughout the day takes care of that.

Thanks again for posting.

[tammylayne]

I am 8 weeks out of reversal and have also been having issues with really bad gas. When I saw my surgeon this week, he said in my case it was due to having my ileo for 14 months, and the bad bacteria had the chance to go wild since they were not being expelled from my body. He has written me a script for some meds that should help speed up the process of getting the bad guys out so the new good guys can take over the colon.

You may want to talk to your doc about this. He also is a big believe in DanActive probiotic drinks. I told him I am also taking digestive enzymes. He didn't comment on those, just said that what I am experiencing is common, and gave me the script to try, with a repeat if I needed a double dose. We shall see how this helps.

Good luck....I know how troubling bad gas can be. I go back to work in a week,,,,and it has to be gone!!!!!

[Stomatrooper]

In hindsight would you have gone for a temp ileostomy had you known?

For others, Post ileostomy reversal how did your bowel movement change?

For all, Did you suffer any form of incontinence?

How do you cope with urgency?

How do you cope with stomach/ bowel pain?

Have you seen an improvement over time?

Do any of you wish you had had a permanenet colostomy such has you life changed you feel chained to the loo?

Is the LAR or any post adjuvant chemo that causes these changes or both?

Is your new "normal" manageable?


Other advice and tips, thanks you so much - everyone on this site has helped me get my mind around all the things I fear.

Best wishes


Charlie

For all, Did you suffer any form of incontinence? - NO

How do you cope with urgency? - NO LONGER A REAL ISSUE

How do you cope with stomach/ bowel pain? - DO NOT HAVE ANY

Have you seen an improvement over time? - GRADUAL, 15 MONTHS OUT NOW

Do any of you wish you had had a permanenet colostomy such has you life changed you feel chained to the loo? - NO

Is the LAR or any post adjuvant chemo that causes these changes or both? - DIDN'T HAVE POST CHEMO

Is your new "normal" manageable? - VERY MUCH SO


Other advice and tips, thanks you so much - everyone on this site has helped me get my mind around all the things I fear.

I WATCH MY DIET MAINLY TO KEEP THINGS MOVING AND AVOID CONSTIPATION WHICH BRINGS DISCOMFORT AND GAS - TAKE METAMUCIL EACH MORNING, EAT WHOLEGRAIN BREAD ONLY, PLENTY OF FRUIT, GREEK YOGHURT ONCE A DAY - ALL OF WHICH TEND TO KEEP ME REGULAR, THOUGH A COUPLE OF GLASSES OF WINE AFTER MY EVENING MEAL HELP TO STIMULATE THINGS.

Good Luck

[sadysue]

Did you suffer any form of incontinence? - Very slighly the first two weeks after ileostomy reversal.

How do you cope with urgency? - Stayed close to the bathroom the first two weeks.

How do you cope with stomach/ bowel pain? - Have not had issues.

Have you seen an improvement over time? - Yes, improvement after 4 weeks. More good days than bad.

Do any of you wish you had had a permanenet colostomy such has you life changed you feel chained to the loo? - Def no.

Is the LAR or any post adjuvant chemo that causes these changes or both? - A combination of everything.

Is your new "normal" manageable? - Mostly yes but I still stay close to the bathroom and prob will for a few more weeks until I can determine a pattern (like time of day) has been established. So far, I am a late afternoon/evening person

Best of luck with your decisions and treatment!
Mary Ann

[greens]

As am approaching ileo reversal tie wondered if clubbers who replied here were abe to give brief "updates" given the passage of time

Best wishes

Charlie
T3N2M0
ypT2,ypN0,ypM0

[RayGirl]

Wow sound like the first months adter ileostomy are brutal.

Did other colon clubbers feel this was adequately explained before or did it come as a surprise and perhaps even a regret?

My surgeon warned me that I would hate it and him for few months, but asked me to at least give it six months before I thought about reversing the reversal. He explained the clustering issues but he didn't really explain that since the anus area hadn't been used for nine months, that re-stretching the area had a bit of pain. Doing keigals really helped me with control issues.

[greens]

Hi Clubbers

Any other contributors or updates from previous posters as time has passed?


I am due my reversal shortly and reading through this post again the references to BRUTAL from many posters has got me anxious...

I am particulrly interested in how others have coped with clustering, how long it goes on for and whether one can change the timing of the clustering outburst each day


Best wishes


Charlie
T3N2 MO
ypT2N0M0

[justin case]

[quote="greens"]Hi Clubbers

Any other contributors or updates from previous posters as time has passed?


I am due my reversal shortly and reading through this post again the references to BRUTAL from many posters has got me anxious...

I am particulrly interested in how others have coped with clustering, how long it goes on for and whether one can change the timing of the clustering outburst each day


Best wishes


I think brutal is a bit of an overstatement, at least in my case. I had some clustering, and diarhea, but that was while I was still on chemo. I do have frequency, and it is slowing down. I tried to stop taking Immodium, and had leaking mucus, and incontinance. I recently started taking one Immodium, with my morning B.P. medicine, and vitamin, and I almost feel normal. I feel like I did, a year before diagnosis. I've been gaining weight, and muscle mass. When you first get reversed, you feel like you are in need of a restroom, all the time. As you get used to the feeling of having waste in the bowels, you slowly begin to treat it, as you always have. How long that takes, is completely individual. Most people feel a great relief, to be rid of the ostomy, and in my case, I was willing to put up with anything. I hope being controlled by your bowels, will become a thing of the past, as it has for me. Charlie, it's time you got your life back, enjoy it!
Regards,
Michael

[sadysue]

Brutal a huge overstatement for me too. Nothing I can think of was "brutal" about my ileo reversal. I am fine and very pleased with the results. I have more bm's than previously but nothing that is difficult to handle and nothing that is urgent. I had some clustering the first several weeks but nothing that would stop me from doing what I wanted/needed to do. No clutering at all anymore, eight months after reversal. Occasionally I will eat something new and that wil trigger more bm's for me but other than that, no complaints from me!

[tammylayne]

I am 9 months psor reversal and am ok with my new normal. I really believe that is key...it is my NEW normal. I try not to compare it to the old days. That isn't fair! I am missing 2 feet of colon and 3/4 of my rectum. I have radiated and poisoned my body. How could things ever be the same, and how unfair of me to expect it to be? What I do is make the best of my NOW. Accept how things are NOW.

Yes,,, I do plan things more around washrooms, but that really isnt an issue...they are everywhere! I won't go where there are none - ie hiking, but I do travel and do pretty much what I want. I do still suffer from clustering, and there are times I bow out of doing things because I know I am in for a rough couple of hours, but I always keep the big picture in mind, and my quality of like is still pretty awesome. I am alive. I am NED. I have BMs on average 4 times a day. Some days not at all. Some days 7 or 8 times. I take immodium freely, I pretty much eat whatever I want. I also was told by a massage therapist that massage can bring on BMs (found this out 15 minutes into my massage ) I now give my tummy a good strong massage when I am struggling to go, and cannot believe the difference it makes. Moves things right along!!!! You do learn little tricks along the way. Your new normal really can be very VERY doable. And if after a year, it's not...then talk to your surgeon about the alternatives. But start with the reversal and go from there...if that is what YOU want to do.

Life is good.

[Surroundedbylove]

Here is the link to my detailed miniblog/thread following several months of my post-takedown experience with periodic updates at the year and thereafter points. All in all, I'm very glad I had the takedown surgery.

viewtopic.php?f=1&t=10327&p=75111&hilit=takedown+info#p75111

[greens]

Thanks everyone


As I get closer to the reversal I am getting more worried, partly becuase my ilesotomy will have been in place for circa one year before take down and I have read that the longer the take down time the more bacteria in the bowel equls more problems.

From all the useful feedback it appears that I may expect in the following problems in short term in hospital:

Stomach,rectal cramps, and nausea - is there any thing to do or take to alleviate?

and in the longer term:

clustering and gas - is there any way to control when the clustering occurs or is random? Howver my biggest fear is passing gas in social situations when I am around friends and family.. does gas remain a problem forever and is there anything to do or take to ease this problem in social situations etc?

best wishes


Charlie
T3N2M0
ypT2ypN0ypM0

[sadysue]

Charlie.....Not everyone experiences rectal cramps, stomach cramps, nausea, etc. I had none of these problems. I had some custering for a few months and it was pretty bad but I survived it. Clustering was exhausting but on the upside, not everyone experiences it. I had custering for several months but as of today, it's gone. Gas was a big issue for me. I had no problems with gas immediately after the reversal but about 3-4 months post reversal it started with a vengence! I was taking a proboitic from CVS, which did absolutely nothing to help. Then I started taking Digestive Advantage, which was called Sustenex before a name change, and it works well for me me. Gas is very rare now. Digestive Advantage seems to kick in pretty quickly - it did for me. Gook luck!
Mary Ann