Tough decision - your input welcome!

[claudine]

I've had 3 ostomy reversals

Geez Rob, that's a lot! As far as the surgeon acknowledging LARS, I wouldn't go that far - he didn't name it that, just warned DH that there would be issues after reversal, such as clustering and feeling the constant need to go. You're the second person mentioning enemas (Utagal7 did too), that's good to know.

DH had a rough weekend, his ileus was so bad they intubated him (nose) to remove fluid accumulation in his intestines (after a scan confirmed that was the problem). Very unpleasant to say the least, but it did the trick of "kick starting" his guts and the tube was removed this morning. The bag is filling up again. DH will *very* carefully start eating again, liquid diet to start with (yogurt, soups); hopefully he can finally come home this week!

[Peregrine]

.... You're the second person mentioning enemas (Utagal7 did too), that's good to know...

I think that an "enema" is only one of several recommended strategies to try. On the "Living with LARS" website it is called "lower colonic irrigation", but it is only one of about a dozen strategies to try when dealing with LARS. The first strategy on the website's list is "Diet", and this is why it will be very important to keep a food-and-toilet log to look for eating patterns that trigger bowel disturbances.

Here is a link to the outline of the "Living with LARS" website, with a link to the website itself :

LARS website outline
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=62507&p=498376#p498376

[Rock_Robster]

Indeed there are lots of things that can be done which potentially can help with LARS. I was given the below booklet after surgery which is published by the Australian government; in my experience these things are often pretty useless but even my surgeon and stoma nurse agreed it’s one of the better resources they’ve seen:

https://coastcolorectal.com.au/wp-conte ... urgery.pdf

[That link is just via a local surgery group as it’s an easier link to the PDF than going through the Dept of Health website].

There is a fantastic Facebook group called Living with Low Anterior Resection Syndrome which I’d highly recommend, with lots of home treatments being discussed. Some of these include:

Fibre supplements (eg Metamucil)
Imodium (loperamide)
Intermittent fasting (eg 8/16)
Avoiding trigger foods/drinks
Tap water enemas
Pelvic floor exercises
Biofeedback training
Sacral neuromodulation

For me I have 3 levels of response:
1. Imodium before meals
2. Intermittent fasting (if I know I have an event, travel etc at a certain time)
3. Tap water enema (if I know I need almost 100% confidence of no bowel movements for ~24 hrs)

Good luck,
Rob

[Rob in PA]

I've had 3 ostomy reversals

Geez Rob, that's a lot! As far as the surgeon acknowledging LARS, I wouldn't go that far - he didn't name it that, just warned DH that there would be issues after reversal, such as clustering and feeling the constant need to go. You're the second person mentioning enemas (Utagal7 did too), that's good to know.

The first reversal was a colostomy reversal which went fine. The second reversal was an iliostomy reversal which failed after I was home for one week, then i had to be rushed to the E.R., get cleaned out and had to have another iliostomy placed for 3 months till I healed up and had another go at the reversal, which, thankfully went ok.

The whole LARS thing....I did the diet log, the imodium, the squatty potty , you name it, before I finally tried the colonic irrigation.

I'm not a good candidate for a permanent colostomy because of all the scar tissue from the other surgeries and ostomies, butt for now , the irrigation seems to be doing the trick.

Cheers,
Rob in PA

[Sunnycd]

Claudine, I had a hard time with my colostomy (leakage, skin issues, etc), and I do remember that in the first few weeks I had to adjust my diet. When I read he wanted to eat tacos, even without beans, I was like “uh-oh”. I went back to the ER room with a blockage within 2 weeks post surgery, and they too, put the tubes up my nose all the way down for 24 hours and it was pretty horrible. So, he has to be very careful about what he eats (I started with oatmeal, smoothies, soups, yogurt, and slowly added more). When I didn’t have an output, I would stop eating solids and stick to liquids only. If that failed, miralax, dulcolax.

[Peregrine]

Indeed there are lots of things that can be done which potentially can help with LARS. I was given the below booklet after surgery which is published by the Australian government; in my experience these things are often pretty useless but even my surgeon and stoma nurse agreed it’s one of the better resources they’ve seen:

https://coastcolorectal.com.au/wp-conte ... urgery.pdf

[That link is just via a local surgery group as it’s an easier link to the PDF than going through the Dept of Health website].

There is a fantastic Facebook group called Living with Low Anterior Resection Syndrome which I’d highly recommend, with lots of home treatments being discussed. Some of these include:

Fibre supplements (eg Metamucil)
Imodium (loperamide)
Intermittent fasting (eg 8/16)
Avoiding trigger foods/drinks
Tap water enemas
Pelvic floor exercises
Biofeedback training
Sacral neuromodulation

For me I have 3 levels of response:
1. Imodium before meals
2. Intermittent fasting (if I know I have an event, travel etc at a certain time)
3. Tap water enema (if I know I need almost 100% confidence of no bowel movements for ~24 hrs)

Good luck,
Rob

Rob -
Yes! The Australian booklet that you already mentioned over a year ago is certainly one of the best resources available for LARS. Here's a link to that booklet's Table of Contents:

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=65193&p=507257#p507257

For comparison, here is the outline of the "Living with LARS" website:

LARS website
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=62507&p=498376#p498376

Also, here's a link to some of the main reversal/takedown threads on this forum:

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=58897&p=464147#p464147

These threads represent only a subset of all relevant threads available. Altogether, there are over 300 threads here that have the word "reversal" in the subject line:

https://coloncancersupport.colonclub.com/search.php?keywords=reversal&terms=all&author=&sc=1&sf=titleonly&sr=posts&sk=t&sd=d&st=0&ch=300&t=0&submit=Search

In my opinion, the best way to deal with reversal problems is to be "proactive" rather than "reactive". In other words, start planning for reversal in advance of reversal surgery, while you still have the temp ileostomy in place. This pre-planning can be both mental and physical in nature. For example, while still on ileostomy you can start doing Kegel exercises to strengthen your pelvic floor muscles and you can start planning for appropriate diets (3 to 5 small, balanced, nutritious meals per day) to avoid the main foods/beverages known to trigger LARS symptoms.

Before reversal surgery takes place, your body already needs to be conditioned to meet the range of challenges that may come with reversal surgery.

[claudine]

I did mention Kegel exercises to DH yesterday; he’d heard of them. Now that his stoma has settled down (reduced flow, much less gas) and he’s not dehydrated anymore, there’s less of a hurry for the reversal, but I still think that the sooner the better. We’ll bring it up next time he’s got a control visit with the surgeon.

[Rock_Robster]

I did mention Kegel exercises to DH yesterday; he’d heard of them. Now that his stoma has settled down (reduced flow, much less gas) and he’s not dehydrated anymore, there’s less of a hurry for the reversal, but I still think that the sooner the better. We’ll bring it up next time he’s got a control visit with the surgeon.

This is great! Something else I learned along the way - there’s a ‘reverse Kegel’ movement as well, which is important to make sure the muscles don’t get too tight and are actually able to release when necessary (might sound strange, but a smaller group of people do struggle with constipation after a ULAR). The movement is basically like you’re trying really hard to make yourself urinate (without actually doing it of course). Anyway, it’s a good reason to have a consult with a physio or pelvic floor therapist to make sure he has a balanced program to develop the new brain-muscle connection the right way.

Perhaps as an added incentive for him - these exercises can also help recover/maintain erectile function more quickly after surgery (both the ULAR and reversal).

And you’re right - research does suggest on average LARS is less severe with less ‘dormant’ bowel time before reversal (obviously to be balanced with the risk of anastomosis leak if it hasn’t fully healed). They should do a leak test (fun…) before reversal anyway.

Good luck.

[claudine]

Well, I think DH has come to a decision: he will do adjuvant treatment. After talking with the surgeon (who did make it very clear that it wouldn't help reversal), oncologist (who said "if this was your first time dealing with cancer, I'd push for it, but given all you've been through, it's your choice"), and finally radiation oncologist (who said that since he's a T3 after all, chances of recurrence are 10-12%, so low, but not negligible), he feels that he'd rather go after cancer aggressively, even if it means a harder path recovering from reversal. I can respect that; recurrence in the pelvis can be difficult to treat. We also broached the possibility that if reversal was nightmarish (after one year or so of trying), there's always the possibility of permanent stoma (colostomy in this case). We knew it would be challenging anyway (the reversal) given that he's only got a couple cm of rectum left.
Not sure what the schedule will be - we should hear from the team soon. Probably radiation (with Xeloda? Not sure yet) late May/through June; then rest/recovery (for? 4-6 weeks maybe?), then reversal in August. So hopefully DH can travel to France in July (with his ileostomy still in place)! He clearly wouldn't have be able to if reversal had happened in June...

[aquarian_asian]

in my case - there is a good gap given between Chemo & reversal. My reversal is done on Feb 2022 & Chemo completed in Aug 2021 second week. Medical team would wait for the body to heal from Surgery & Chemo effects in general. Again it depends from a person to person

Thanks

[Rikimaroo]

As much as I hate Chemo, Claudine; I think your husband is making the right decision. My rectal cancer just won't go away and is around the pelvis and can't really be treated with Surgery anymore, at least that's what it seems like, waiting for 2nd opinion doc, but good decision.

[claudine]

Thanks both for input. DH can't do Oxaliplatin (it didn't work for him as first line treatment, and gave him permanent neuropathy), so I think chemo would be Xeloda only; he's had it before and it's pretty mellow in terms of side effects, especially if only for a few weeks. Waiting to hear from team though.

[taexali]

LARS not accepted for "Compassionate Allowance" by SSA

SSA response in italics:

RE: CAL Condition Suggestion: Low Anterior Resection Syndrome

Compassionate.Allowances@ssa.gov.

* To:xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
* Cc:Compassionate.Allowances@ssa.gov
Tue 8/29/2023 1:04 PM

Thank you for your August 27, 2023 submission of Low Anterior Resection Syndrome for consideration as a Compassionate Allowances (CAL) condition.

At this time, we have determined that cases involving Low Anterior Resection Syndrome are best handled through our standard disability claims process.

The purpose of this letter is to inform you that Low Anterior Resection Syndrome does not meet our criteria for expedited handling under the CAL initiative. This is not a decision about any disability claim. Our office does not handle individual claims. For additional information on the CAL initiative, please visit https://www.ssa.gov/compassionateallowances/.

If you would like to file for disability benefits, check the status of an existing claim, or learn more about Social Security's disability programs, please visit https://ssa.gov/benefits/disability.

To contact the field office that services your area, go to https://secure.ssa.gov/ICON/main.jsp.

Sincerely,

Compassionate Allowances Team