Bowel changes + bathroom issues post LAR: tips&advice

[greens]

Hello Colon Club


Last evening I received a number of hugely useful tips on how to prepare for and what to expect from LAR procedure.
FYI just finishing chemo radiation 6 weeks, LAR due soon I have reactal carcinoma at 10 cm anal verge ie mid/high and am clinical T3, N2, M0.

One or two of you referred to how post LAR during and subsequent chemo had caused bowel changes. Although I undertsnad LAR is intended to be sphincter sparing and that during any period of temp ileostomy bowels will not move (there is some idea mooted by my surgeon that maybe I wont require one but Im not sure this is in my best interests) I had the following questions to those who have trod this path before. (Understandably some of these issues are difficult for some to share but I must face them so would understand if anyone would prefer to PM):

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

If so did bowel movement over the unhealed issue give you additional problems?

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

[jjlist]

For some, Were you given the opportunity to avoid temp ileostomy altogether.?
nope, my surgeon said he would decide when he got in there. my tumor was 5cm's in.

If so did bowel movement over the unhealed issue give you additional problems?
N/A

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

For others, Post ileostomy reversal how did your bowel movement change?
changed alot. much more frequent, sometimes constipation, there is never a one and done evacuation of my bowels.
For all, Did you suffer any form of incontinence?
yes

How do you cope with urgency?
stay close to a bathroom, take immodium or percocets, avoid eating if you will not have easy and continued access to a bathroom. eating a will trigger
bm's.

How do you cope with stomach/ bowel pain?
pain medication

Have you seen an improvement over time?
yes , and it is still improving. very , very slow process

Do any of you wish you had had a permanenet colostomy such has you life changed you feel chained to the loo?
not yet, some day i might.

Is the LAR or any post adjuvant chemo that causes these changes or both?
yes to both , plus your own physiology and anatomy

Is your new "normal" manageable?
only you will be able to truly answer that


Other advice and tips, thanks you so much - everyone on this site has helped me get my mind around all the things I fear.
lots of questions here. These topics have been covered in much detail in previous threads. Run a search for these topics
good luck and best wishes
jim

[BrownBagger]

I wasn't given the option. I had the ileostomy for 10 weeks, at which point it was reversed. It took about 18 months for my bowel function to settle into my new normal, which isn't any better nor any worse than my old normal. Different, but not any more difficult. The first two months post-reversal were the hardest, but nothing I couldn't manage. I returned to work, traveled, exercised, etc. Probably the most effective way to control your bowel function after reversal is with narcotic painkillers like percocet. Imodium also works well. I always find exercise to be beneficial. And, you need to pay attention to what you eat and what effect it has on your digestive system. For me, that was temporary, though I really can't eat things, like cheese, that cause constipation--given the lack of rectal "push" muscles. I take about 3 tbs of Metamucil dissolved in water, daily.

[raym]

I didn't have such a low resection and no bag, but agree with BrownBagger on figuring out what you can eat, when, how much, etc. It's a bit of trial and error provided you are on an unrestricted diet. One thing that gets me is being off my normal "feed". Hitting a restaurant (or several while on vaca). The food tends to be richer and more plentiful than my normal diet. For me it at times takes some planning on when to eat versus what I am doing for the day. If I am going to an event, I tend to make sure I eat well before and get any bathroom trips out of the way.

[nicola smith]

Although my situation is a bit different (colon cancer not rectal), I've answered the questions I can. I was given no choice about having a temp ileo. I follow the MD Anderson program that uses pysllium and imodium to help regulate bowel movements and it's working very well. I also take probiotics daily (vsl#3)

Hello Colon Club

Post ileostomy reversal how did your bowel movement change? More frequent bowel movements with liquid stools, often burning

For all, Did you suffer any form of incontinence? Once or twice, I experienced some leakage at night. That was early days and I have no issues now.

How do you cope with urgency? Didn't have any unless you count the rectal spasms (see next question)

How do you cope with stomach/ bowel pain? I had rectal spasms between weeks 2 and 6 (approx) that were very strong to begin with and then disappeared. I took a mild sedative at night but, during the day, I just gutted them out.

Have you seen an improvement over time? Most definitely - stools are now consistently formed, although still soft, and frequency is way down.

Do any of you wish you had had a permanenet colostomy such has you life changed you feel chained to the loo? Absolutely not

Is your new "normal" manageable? Totally

Charlie

[greens]

For those that mentioned incontinence, and others, how long does it usually last for and where travelling is concerned what is the best remedy?


Best wishes

Charlie

[brigita]

The first few months after my reversal were brutal. I had vicious, clustering shits every night starting at 6ish (pm) that would last 1-2h. I've lost plenty of sleep (and dignity) on account of my unreliable bowels.

I can say that dietary tweaks, Imodium, probiotics (including Florastor--this stuff is GOOD), meal timing, and time itself has made things better, but it's been a long three-year haul to get to where I am now.

Lots of luck to you!

[greens]

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?

Best wishes


Charlie

[beth568]

Charlie, I didn't have an ileostomy, so these issues began for me shortly after surgery. While I can't say the first few weeks were pleasant, things really did improve with time. Everyone's experience is different, and tweaks with diet, timing of meals, etc make a big difference. Don't panic about it - you may have a very easy time.

I will say that I got pretty discouraged in the beginning. I had a lot of discomfort from the frequent bowel movements (terrible butt burn) and also what felt like some internal pain at my anastamosis site. That started to resolve about 4 weeks after surgery, and now it's not a problem anymore.

As with most things, time works wonders. In our cases, it may just be more time than we'd like.

[BrownBagger]

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

I didn't feel that it was adequately explained, but I had some idea of what to expect from hanging around the Colon Club (I joined just before my reversal surgery), so I wasn't surprised or unprepared. I think surgeons try not to induce paranoia in their patients, so they tend to downplay the potential problems, preferring to deal with them as they arise, as needed. Some people handle reversal very well, others, not so well.

[Jachut]

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

Nope, no choice. I had a rectal tumour 5cm from the anal verge, i was always going to have a temp ileostomy.

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

The consistency is surprisingly normal, although I guess since I lost my rectum, not my colon, that is to be expected. Bowel motions are solid. However, they are very small and skinny and very difficult to pass even though not hard. I dont have the push muscles to do it effectively. I tend to go a day or two with hardly anything and then have a big clustered cleanout. I have never had just one big elimination, it always takes about six visits to the loo over a couple of hours.

For all, Did you suffer any form of incontinence?

No, never

How do you cope with urgency?

Urgency passed within the first week, I stayed at home. since then I dont have urgency, I can hang on as long as I need to, even all day. Doesnt make me feel great, but I can do it, same as before.


How do you cope with stomach/ bowel pain?

Moan and bitch alot to my family. At present, I have a constant low grade belly ache that feels like mild period pain. Its not even bad enough to take anything for, just "there".

Have you seen an improvement over time?

Its been 4 months. I made very fast improvement for the first 3 weeks, was thrilled and now I feel like I've regressed somewhat. I ahve a constant, unrelenting urge to defecate 24 hours day, It never leaves and is not relieved by actually opening my bowels - more often than not there is nothing there to eliminate so I just push and strain.

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

At the moment, yes. I'm sorry I reversed. I feel bad saying that. I think to someone else who maybe was very sick beforehand they may wish they had my problems. But I am very physically active and I had just graduated as a teacher and this is making my exercise and working life much much less enjoyable and more difficult. I dont want to go out socially because of the risk of the clean out striking and me being stuck in the toilet for hours. I'm still worred about rogue gas attacks. I feel below par. My mind is on my bowels 24/7 and I hate that. I know that I have a lot of time and a lot of improvement to come yet, but at the moment, I am not a happy camper. I would much rather have a colostomy than live like this. I really dont care what hole it comes out of as long as I can live my life.

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

No idea, I suspect is the neoadjuvant radiation that's the culprit.

Is your new "normal" manageable?

If you mean am I continent and can I go out and function - yes. If you mean do I want to live this way forever - no.

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

The first few months ARE brutal, like someone said above. I dont think this was explained to me - I was aware of the possibility of diarrhoea, urgency and incontinence but I never imagined that a "good" outcome like I've had could be such a drag. Still, it IS early days, patience is a must with this.

As to the actual ileostomy, I found that a breeze. I adjusted quickly and well, my one piece system worked brilliantly for me (just a tip, if you can get yourself a flat hard tummy before surgery, it helps enormously, lol, my stoma nurse raved about the great sticking surface I had), leaks were few and far between and even the chemo diarrhoea was easily dealt with. I ran, went to gym, socialised, went away, swam and body surfed and did everything with my ileostomy. I wore low rise skinny jeans and bathing suits, it wasnt visible. the worst I had with that was sore and burning skin round the stoma on occasion. I am much more limited in what I am confident doing and what I feel well enough to do post reversal.

[jjlist]

The first 3 months were brutal for me. The adjustment process has gone painfully slow. And it still is going on.
It was not adaquately explained to me what it would be like by anyone on my medical team. to the contrary, the impression they gave me was how great it will be not to have a bag. So , I hoped for the best, and was prepared for the worst. So the worst was not a total suprise. My preparation came from the best source.
My fellow colon club members.

and now you know,
the,,,, rest of the story.

[sg101]

I had a temp ileo. My reversal was delayed due to a 'leak' at the colonic stump or my side-to-end anastomosis with resulting abscess and need for IV antibiotics. I waited another 4 months to heal and then do the reversal. Testing revealed a persistent "leak", another abscess formed and more IV antibiotics. I then wound up with surgery to repair the leak (my surgeon managed to do this noninvasively - he rocks!) and at the end of July, I underwent reversal. WIth this history in mind, I will answer your questions:

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

I asked and this was highly discouraged. The reason that many surgeons to the ileostomy is to avoid the complication of an anastomic ring leak (which is worse than what I had) during the post-op period. I saw 2 different surgeons and both quoted a 20-25% leak rate. This is actually a serious complication which in the post-op period can lead to severe sepsis and death. In addition, diarrhea is a major side effect of the post-op chemo. Many consider it easier to have the ileo during this period and then to re-learn to use regular plumbing once the chemo-induced diarrhea is done.

If so did bowel movement over the unhealed issue give you additional problems? N/A

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

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

I am still in the early phase. As others have noted, there is a certain unpredictability that can cause a lot of anxiety. I find that I am ok for 2, 3, 4 days and then I suddenly have to poop over several hours. This can be extremely inconvenient if it occurs at work or during a social event. I am still on a fairly limited diet as I am afraid to advance it since I'm still having issues on a restricted diet. I seem to swing from diarrhea to constipation (the latter often related to imodium that I take for the diarrhea). This actually sounds worse than it is...

For all, Did you suffer any form of incontinence?

Not even once! That was a surprise to me after reading many horror stories on the board. I will say that for the first month after reversal, I mostly stayed at home and frequently had to 'fly' to the bathroom, but I managed to make it every time
How do you cope with urgency?

How do you cope with stomach/ bowel pain?

I have not had any pain, except for discomfort related to gas on occasion.

Have you seen an improvement over time?

Things are definitely better now (2 1/2 months post-op) than they were in the beginning. My surgeon told me that it can take 6 to 18 months to get to a stable place, or what is called "the new normal". I am hoping things continue to improve.

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

Not yet. I was used to the ileostomy (I had it for 18 months!) but it had a major negative effect on my psyche. I didn't realize quite how unhappy I was with it until I didn't have it anymore. If I eat the wrong thing now, all that happens is that I get diarrhea or gas. I don't have to worry about getting a blockage or blowing out the appliance. And there is hope for returning to a normal diet someday - yay!

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

I suspect that it is a combination. The LAR procedure can injure nerves in the area that affect the ability to sense stool. In addition, it can affect the ability of the muscles to respond. I am sure that the radiation contributes additional injury to the tissues and nerves.

Is your new "normal" manageable?

It is manageable so far. I have not tried anything overly challenging. I make sure that I can get to a bathroom along the road. I took my first road trip to visit relatives in NYC two weeks ago and all went well. I would like to get to the point that I feel that I can do something away from a bathroom (e.g. go for a hike or other such trip in which a bathroom might not be readily available), but I'm going to give myself a little longer to get to that point.

I thought I copied all of your questions, but I don't see the one where you asked whether my surgeon prepared me for the outcome after reversal. I was certainly prepared by him. He told me all of the details of everything (I asked him about it) on my very first visit to him (only 2 days after my diagnosis). He patiently explained LAR, temp ileo, reversal and the pros and cons of immediate reconnect vs. ileo. He also told me what to expect after reversal, and he definitely did not make it sound any easier than it has been. I guess that is why I like my surgeon - I may not always like the answers but he is a straight shooter and tells it like it is.

Hope this helps!

[Jachut]

So much of what you read about ileostomy reversals relates to people who've had complete colectomies and have an ileoanal connection. I think that it is often much easier for those of us who had rectal cancer as our colons are still doing their job (more or less!) and we're not dealing with a completely liquid output.

As to immodium, interesting comment above - I avoid immodium unless its absolutely imperative that I have a clear day - it constipates me and gives me four or five days of real grief, followed by a day of complete clean out which is very painful. I absolutely dont believe that immodium is a medication you can just pop whenever you wish to make your bowels behave a bit more conveniently. I'm also fairly sure that taking immodium - as I was urged to do by my stoma nurse who didnt like how much liquid output I was having - was a major contributor to my first hospitalisation for a bowel obstruction (seemed to be a side effect of 5FU for me, I had several of them not caused by eating the wrong thing). After that I just let my ileostomy do what it would, I never got too dehydrated, despite always having diarrhoea.

[momcdonald7@aol.com]

I had had an ileostomy for Stage 1 Rectal Cancer after an LAR and had it reversed, and feel very lucky that things have gone so well. The one embarrassing problem I deal with, though, is really smelly gas that I can't control, especially when I eat any sweets. I had read that after injury or shock some people's intestines stop producing certain enzymes so I started taking Enzymatica enzymes with some luck although if I take too many over a few days, they can become constipating. Has anyone had this problem and/or had any better way of dealing with it. My one Dr. says enzymes are a waste of money. I am grateful that this is my only complaint 3 years out but the silent smelly gas is embarrassing, especially for me as a woman. I'm looking for anyone's experience with ways to deal with it. Maura