Recent LAR & Loop Iliostomy

[scohow66]

Hi - had robotic LAR past Tuesday, 4/25, with temp ileostomy to address a T2N0M0 tumor. Pre surgery chemo rad as well. Waiting on path for final staging of tumor and to determine LN involvement and if margins ok. Low tumor so if margins compromised going back in for perm colostomy. If ok, then reversal in 3 months and most likely dealing with LARS. Interested in any advice, tips, etc for dealing with the new ostomy and surgery recovery. Doing well so far, discharged after 3 nights inpatient.

Appreciate any input!

Tx

[Lee]

Best advice I can give if not already doing so. Continue to walk, walk, walk. It really does help with the healing process.

I have a permanent colostomy, one day at a time. For me, it gave me my life back. Keep some supplies with you at all times. I keep some in my car, purse, etc. Butt I've stuffed a extra bag or two in my back pocket on a few occasions. Along with a zip lock bag and small lunch paper bag.

Because you have an ileostomy, you will probably have more liquid output than I. Also I believe you will see more undigested food than I. Try to stick with a low fiber diet for a few weeks, do keep track if some food effect you, (ie raw foods produce a ton of gas, not saying this is true, butt just n example).

There is a few websites out there just for people who do have colostomy/ileostomy.

Hope this helps,

Lee

[MissMolly]

Hold on tight . . . The loop ileostomy is the most challenging of the ostomies to manage. The loop ileostomy it is positioned higher up the digestive tract than an end ileostomy or colostomy which equates to: highly liquid consistency of fecal output; fairly constant flow of fecal output, 24-7; high volume of fecal output; high concentration of digestive enzymes. Monitoring skin integrity if of particular importance with a loop ileostomy due to the corrosive nature of the digestive enzymes.

While the challenges of a loop ileostomy can be taxing, they can be successfully navigated with a bit of experimentation of the varied ostomy pouching systems and accessories available.

There are four main ostomy pouching manufacturers: Coloplast; Hollister; ConvaTec; and CyMed. Each brand has different qualities that are unique to its pouches and wafers. Finding the best pouching system for you and your abdominal topography and skin characteristics is your first order of business. It is wise to contact each of the manufacturers and request product samples. Each manufacturer has a 1-800 number and knowledgeable customer representatives who will advise you on product selection based on your individual characteristics. You can find manufacturer information on the United Ostomy Association of America web-site.

The United Ostomy Association of America (UOAA) has an active on-line support forum. For all-things ostomy, this is the site to go to. The UOAA was my life-line during the early weeks of my ostomy.

www.ostomy.org

Feel free to venture over to the UOAA and get relevant advice on ostomy products and pouching techniques. I am an active participant on the UOAA (aka "Button"). It is a lively forum with a good blend of wisdom, knowledge, humor, and empathy.
- Karen -

[JesaWicked]

I agree with Lee. Keep supplies with you at all times. I've only had mine for 3 weeks but I've had leaks already (due to the swelling after surgery and things still shifting). Keep watch of your output and stay away from fiber for the first few weeks until the swelling goes down so nothing gets blocked. I had mucocutaneous separation and that was a pain in the butt to deal with but thank god it's getting better now (thanks to the paste). At times it can seem overwhelming but I'm slowly getting used to my ileostomy loop.

Best of luck to you!
Jesa

[scohow66]

Thanks all. Has anyone had issues with hernias? Also, heard that marshmallow's can thicken up/slow down output? Any recommendations from a male perspective on work pants/belts and how best to dress? Been hearing "tube tops" can help smooth out the bulge, etc.

Tx

Scott

[chrisca]

If you need a dress shirt and tie at work, a tighter fitting t-shirt or tank top underneath will make the bag harder to see. If you can be less formal, loose fitting shirts that aren't tucked in will work even better and are more comfortable. Always have a spare change of clothing in case the bag leaks. Let your management know about the situation so they are not surprised at the last minute. It may be possible to work out in advance for a person to cover for you and hopefully it won't be necessary but always good to have a plan. Keep towels in the office so if you need to sop up a leak quickly, one is handy.

As we enter summer electrolyte management is important with ileostomy. Drink Gatorade or a similar beverage, keep salt intake up. Don't sweat too much as it will loosen the bag seal. Exercise is good, but time it so you don't break a sweat and try to stay cool while doing it. I hiked with my ileostomy and found I could go a maximum of five miles as long as it wasn't a steep climb and it wasn't too hot. If you do sweat, be especially watchful of the bag seal as that's likely the time there will be an issue. Partial leaks can also happen that irritate the skin around the stoma so eventually I got into the habit that if it was a hot day or I did a lot of exercise, I changed the bag shortly afterward as a precaution. It made a big difference in keeping irritation under control.

Put a mattress cover on your bed if you haven't done it already. Leaks often happen at night.

Blockages can happen with an ileostomy. Foods such as nuts and unmilled corn can cause it as well as other very fibrous foods. Chew food well, take adequate water if eating foods with a lot of fiber. After dealing with a blockage, if I had to do it again I would skip corn and whole nuts. Nut butters that are creamy, not chunky, are OK. Avoid seeds too, unless it's a tiny amount.

[David from Canada]

I worked an office job. I would recommend a stealth belt for the ileo stomy. Wore it every day I had it and was very happy with it. As far as LARS Metamucil made a huge difference in my routine, have a glass with every breakfast!