Recent LAR and Temp Loop 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

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

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