Recent LAR and Temp Loop Ileostomy

scohow66

Hi folks - just had LAR and ileostomy last week. Was to address T1N0M0 rectal tumor.  Waiting on path which may result in perm colostomy and/or more chemo if in LN...fingers crossed!  Things going well so far.  Was robotic surgery so out in about 3 days.  Looking for input, suggestions, tips for managing recover from LAR, but also the loop ileostomy.  Been trying different foods and far so good.  Trying to thicken things up a bit so taking fiber.  Still managing some pain and walking/moving a lot.  Any experiences around timeline to recover and managing the stoma would be appreciated.

Tx

Trubrit

Glad the surgery is over

Time to heal now. Three days in hospital if plenty. Hate those places, though grateful for the work done there. 

I can't help you with input, as my case was different. Just wishing a quick and speedy recovery with the bestest of best outcomes. 

TRU

Cindy225

LAR and Ileostomy

Hey -  I’m new to this forum but can provide my input based on LAR surgery and ileostomy in November 2016. Great for you surgery is over and now in recovery.  So hard waiting for the pathology report.  I prayed would not be lymphatic involvement but came back 7/13 involved. 

On 10^th chemo treatment now and on backside of the mountain running down. Fortunately, for me the chemo is what it is and have been slugging through it. As far as input managing the recovery BE PATIENT. Take it easy. I’m very active so it was a struggle to be chill.  Caught a terrible cold and cough and thought I was going to burst my gut.  Using a coughing pillow was a godsend.  Swear it kept me from getting a hernia.  I’m a huge fan of Fitbit so I managed to do 250 steps an hour to stay active until I could manage more walking.  I did get a strain that felt like stabbing pains that the surgeon told me was nerve ending pain and to chill more.  Stayed off of meds…

As far as the ileostomy….oyyy.  Arts and craft project.  Skin care is really important. Eventually, mastered the emptying and changing process but still not a fan.  Biggest concern is hydration. Really need to drink 8-10 glasses of water a day.  I’m a coffee hound and had to reduce to one cup a day. Eating habits had to completely change to manage consistency of output.  Diet is a whole lot of white bread, white rice, and white noodles. Ugh. Every time eat cooked veggies and protein eat foods to thicken and retain fluids.  Or the other trick an ostomy nurse shared is eat a marshmallow with it.  Blockage is real.  Had one and it was horrible.  Abdominal pain, all water output, vomiting. Turns out it was lettuce blocking the stoma. No more salads for a while. Make sure you get from your ostomy nurse a card for you and the hospital if you get a blockage and can’t dislodge it yourself.  Most suburban hospitals don’t know what to do.   

Joyful to say that really trying to manage this journey instead of it managing me.  Meditation, mindfulness activities and friends and family are my sources of strength.  Signed up for a 5K race the weekend of my last disconnect from chemo in June.  Have been using the Couch to 5K app with a friend recovering from hip surgery.  Using a stealth belt to secure my stoma while running. Planning on attending my friend’s daughter’s wedding in Cali with the ileostomy so making appropriate travel and clothing choices to ensure a smooth event. Reco get travel card for ileostomy if doing air travel for TSA check-in.

Reversal to be in July and learning all about that phase. Connected with another cancer survivor 2 months ahead of me and she has described the reversal process as the new normal that is manageable and preferable over the ileostomy. 

 

Good luck with your recovery and next steps.  Hope is a strategy and hopeful your pathology report is no lymphatic involvement and no chemo….

Best. Cindy

scohow66

Cindy225 said:

LAR and Ileostomy

Hey -  I’m new to this forum but can provide my input based on LAR surgery and ileostomy in November 2016. Great for you surgery is over and now in recovery.  So hard waiting for the pathology report.  I prayed would not be lymphatic involvement but came back 7/13 involved. 

On 10^th chemo treatment now and on backside of the mountain running down. Fortunately, for me the chemo is what it is and have been slugging through it. As far as input managing the recovery BE PATIENT. Take it easy. I’m very active so it was a struggle to be chill.  Caught a terrible cold and cough and thought I was going to burst my gut.  Using a coughing pillow was a godsend.  Swear it kept me from getting a hernia.  I’m a huge fan of Fitbit so I managed to do 250 steps an hour to stay active until I could manage more walking.  I did get a strain that felt like stabbing pains that the surgeon told me was nerve ending pain and to chill more.  Stayed off of meds…

As far as the ileostomy….oyyy.  Arts and craft project.  Skin care is really important. Eventually, mastered the emptying and changing process but still not a fan.  Biggest concern is hydration. Really need to drink 8-10 glasses of water a day.  I’m a coffee hound and had to reduce to one cup a day. Eating habits had to completely change to manage consistency of output.  Diet is a whole lot of white bread, white rice, and white noodles. Ugh. Every time eat cooked veggies and protein eat foods to thicken and retain fluids.  Or the other trick an ostomy nurse shared is eat a marshmallow with it.  Blockage is real.  Had one and it was horrible.  Abdominal pain, all water output, vomiting. Turns out it was lettuce blocking the stoma. No more salads for a while. Make sure you get from your ostomy nurse a card for you and the hospital if you get a blockage and can’t dislodge it yourself.  Most suburban hospitals don’t know what to do.   

Joyful to say that really trying to manage this journey instead of it managing me.  Meditation, mindfulness activities and friends and family are my sources of strength.  Signed up for a 5K race the weekend of my last disconnect from chemo in June.  Have been using the Couch to 5K app with a friend recovering from hip surgery.  Using a stealth belt to secure my stoma while running. Planning on attending my friend’s daughter’s wedding in Cali with the ileostomy so making appropriate travel and clothing choices to ensure a smooth event. Reco get travel card for ileostomy if doing air travel for TSA check-in.

Reversal to be in July and learning all about that phase. Connected with another cancer survivor 2 months ahead of me and she has described the reversal process as the new normal that is manageable and preferable over the ileostomy. 

 

Good luck with your recovery and next steps.  Hope is a strategy and hopeful your pathology report is no lymphatic involvement and no chemo….

Best. Cindy

LAR and Ileostomy

Thanks Cindy, appreciate you input.  Can you clarify the piece on cooked vegi's and protien....along with the marshmellow?  I am doing well so far and avoiding leafy things as I hear it can cause problems.  Agree the low fiber diet is not ideal...really trying to find the right mix of food and fiber suplements to manage consistent output and viscosity.  Also, managing activity with rest...a fine balance!

Scott

JanJan63

I had mine done February of

I had mine done February of 2014 so it's been three plus years. I'm on the list to have it reversed and can do so but I'm not planning to. It could have been reversed sooner but I had medical stuff going on and it was delayed. I was given a diet but I don't stick to it very well. I pretty much eat what I want, not a bad diet but I must have vegetables. My output is very liquid and I find the only thing that changes that is eating meat or potatoes. I had IBS my whole adults life before the colon cancer so apparently liquid is mormal for me for whatever reason. I take straight codeine to try to compbat it but event that doesn't make much of a difference. I eat salad often and have had no issues with that. But celery is a no unless I sit and pick out every string. A pain in the butt but sometimes I do it because I want it so badly. My surgeon has told me no canned mushrooms and no membranes of oranges or grapefruit, both of which I love so I cut them in half and eat them with a spoon.

I've had a few blockages that have rectified themselves after several days but it's miserable during them. Celery did it once, just the strings. That was the worst one and I was sick for almost two weeks. The other ones were a mystery. I eat raw carrots but I chew them very carefully. I also eat corn and also chew it carefully. Spinach raw or cooked hasn't bothered me, either. I assume everyone is a bit different, though, so what worked for me won't necessarily work for someone else. I eat most veggies, though. It's trial and error to a certain extent but having a blockage is pretty nasty so you dont want to fid out the hard way that something is off limits. I also eat popcorn without issue.

I can't remember how long it took to heal but I remember it was quicker than I expected. I thought I wouldn't be able to ride my horse but I was riding in a couple of weeks. Now it doesn't bother me at all. I wear loose shirts in case it fills up so I don't have to empty it right away. I have noticed that if I go out for dinner it will fill up quickly while Im eating. It seems like the stomach tries to send stuff through fast when it has more coming in. A freind who also has an ostemy says the same thing. She's had hers since the late seventies due to Chrohn's. 

My ostemy nurse told me about the marshmallow trick. Supposedly you eat one some time before you change your pouch and it stops it from emptying while you're changing it. I've never tried it. I just do it between meals or a couple of hours after dinner after a hot bath to loosen the adhesive. Occasionally it starts up while I'm doing it but mostly it's not an issue.

Best of luck! It's a little creepy but I've learned to appreciate mine. No passing gas, no diarrhea, makes my life much easier. I can eat things I couldn't before and never have to worry about finding a bathroom in public. My surgeon said the IBS will likely be worse after a reversal so there's no way I'm risking that.

Jan

Cindy225

LAR and Ileostomy

Issue for me is the consistency of the output is really liquid if I eat eggs, fish, chicken, meat and cooked vegetables. I need to eat bread, rice, pasta or as Jan mentioned potatoes with it to lessen the liquid.  The trick I was referring to with the marshmallows is if you eat one or two after a meal of protein and veggies the marshmallow thickens the output.  Very cool that Jan learned it also slows down the stoma activity! Now another reason to eat marshmallows.  As long as I cook, roast or grill most veggies I can eat them. There’s been a lot of discussion on the network about juicing and I haven’t tried it yet. Testing out V-8 juice to see how that works. I’m in amazing awe of Jan eating raw carrots, corn and popcorn… Wow! Can’t wait to eat a big bucket of popcorn and a fully loaded salad with seeds, nuts and berries…

Jan brings up the clothes challenge.  Seems most everyone wears larger baggier outfits.  Have heard from men that belts can be a challenge and many use suspenders. Actually, a fellow shared with me that he uses tube tops to wear around his middle to smooth out the bag bulge.  I actually started wearing them myself. You can get them on Amazon. Blow outs are real so need to make sure you carry a back-up kit in case you have one.  Eek!

Scott if you learn any tips and tricks along the way please share…. Thanks Jan for your insight and experience.  So helpful. 

Cindy

scohow66

LAR and Ileostomy

Thanks again Cindy...all makes sense.  I am still determining what various foods are doing to my output, but will heed your advice!  When you say "blow outs" are you referring to the bag failing system failing?

Love the tube top recommendation too...will follow up on that.

Thanks again.

Scott

lhduffer

LAR and Temp Ileostomy

I had my LAR April 2016 and my reversal September 2016.  The tips and foods mentioned above are good for the ileostomy.  My doctor recommended Metamucil to help thicken my output.  I also noticed that pudding also thickened the output.  I followed the low fiber diet pretty closely, which was torture as I was a very healthy eater before.  However, since mine was temporary I did not want to take any chances with a blockage.  Things I was told that could cause problems were corn, mushrooms, skins and nuts.  The uoaa.org/forum site also has lots of good information on dealing with an ostomy.

I also found that my stoma (her name was Alice...Active Alice) changed quite a bit during the time I had it and eventually I had to use a convex system due to the change in my stoma and leakage.  The marshmallows are a good trick for changes but I found that my best time was first thing in the morning before I ate or drank anything.  This tended to be the time for the least output, which made things much easier.  You will learn to manage the ileostomy and learn tips and tricks that work for you.

As for the clothing challenge, the tube top is a great idea.  I purchased some of the products from ostomysecrets that worked well for me.  They gave me more peace of mind and support for the bag with my active lifestyle and worked great for golfing.

As for the reversal, I am very happy that I had mine.  During my LAR they removed my entire rectum and some of my sigmoid colon (24 cm total), which did not give me real good odds for a great outcome after the reversal.  However, although the first few months can be pretty challenging, it does get better and you learn how different foods effect your new system and you do find your "new normal".  

Wishing you a quick, and uneventful, recovery!

Lisa

JoanMar

https://csn.cancer.org/discussion/comment/1579607#Comment_1579607

Hi there, looking for someone who has been through this, I am facing LAR surgery, followed by ileostomy and then reversal. No where can I find any positivity about the post LAR issues and Syndrome which sounds pretty much like a given. I am 73, active still working, travel and fly generally on a weekly or bi-weekly basis. Spend lots of time with my grandchildren, we rent a house on a lake for 3 weeks each summer all together. Does not sound like any of this fits in with LAR Syndrome. So my decision is go or no go with the surgery and focus on my QOL . I just finished TNT, radiation/FOLFOX and have my MRI and CTs scheduled for next week. Hoping for a Complete Response and would then go with Wait and Watch. But those odds are not great. Any thoughts on life post LAR

JoanMar

https://csn.cancer.org/discussion/comment/1693759#Comment_1693759

Thank you for your insight and advice, I am so happy to hear your comments about things getting better.

Joan