2nd surgery next month

I ate just about anything when I had the bag, but avoided raw veggies. I had more issues with the loop ileostomy leaking so if you do as well, work with your ostomy nurse to make sure you have bags that work well for you. I also had discharge from the j pouch/rectal area. Generally mucus, sometimes small amount of stool. Thats normal. Keep hydrated! Good luck and congrats on moving forward! 

Kmiller thanks for the info. Ive had my end ileostomy now for almost a year and I'm very nervous and excited about getting the next surgerys completed in the upcoming months.

My end ileostomy was very comfortable and easy to use, but the loop was a nightmare. I had to remeasure the stoma at every change and had to cut the wafer at exactly the same shape of the stoma (not round, not oval, but the exact shape), which was not necessary with the end ileostomy. Mine was continually shrinking and sinking into my abdomen until the next surgery.

You may want to use the plastic that you remove to open the adhesive behind the wafer as a mold for next change, as it has the shape of the opening you had cut, so that it would not take forever to remeasure again at next change. You can cut a shape using that mold, and see if you need to make any modifications. You would need a small standing mirror to put on the bathroom vanity that you can see the stoma very clearly to make sure there is no gap around the stoma, else that gap may burn like hell. Your output will be very corrosive with the loop.

Elif i keep hearing the loop is a nightmare but i guess i have to deal with it for a few months to get to the finish line. Ive got my end ileostomy down to a science. I cant even remember the last leak i had. I guess i just have to keep my head up and get through it.

How long should i expect to be off work?

I had a 6 week leave from work. I slept around 12-16 hours everyday the first 4 weeks to recover -mine was an open surgery- so 6 weeks was necessary. This is the hardest one of the 3 surgeries.

You will deal with the loop, it is only three months. It took me 4-6 weeks to learn to manage it. Once I got a mirror to stand right in front of me during changes, things have improved. Seeing it in the bathroom mirror was to far away for me to cut the hole exactly the same shape as the stoma.

Hi Jaydog,  I also struggled with the loop ileo.  I was only supposed to have two surgeries total, but got peritonitis after the jpouch was contructed/connected and ended up with a loop ileo anyway.  I actually worked from home for several months with the loop ileo - had terrible trouble with leaking and skin erosion.  I only missed two weeks of work, including the 10 days in hospital, but that was because of the WFH.  

But it was still all worth it in the end to get rid of the ostomy all together!  Life with a jpouch is far from ideal, but for me its loads better than the ostomy.  

The loop ileo is higher up the small intestine than the end one, so your output is going to be more watery and there will be, of course, more of it.  My dr. said not to drink and eat at the same time.  Try and wait an hour in between.  Add extra liquids to keep from dehydration, and you may need extra salt since you lose a lot with the watery output.  

I followed a very low residue diet with both ileos,  and kept that up for a few months with the jpouch.  I ate a fair amount of Cheerios and saltines with peanut butter.  Well cooked thinly sliced or chopped chicken and turkey were good.  Cooked carrots. I have no dairy problems, so I had greek yogurt and cheese.  Soft cooked eggs.  Smoothies. Basically toddler food.   And chew very very well.  

One time I made chicken pot pie and accidentally ate a couple of the peas while I was picking through to eat the chicken and carrots.  They plugged me up a bit, and it was uncomfortable.  I had a clear bag on and I kept checking to see if my ostomy was working yet.  Finally the pressure got to be enough that a pea shot out like a tiny green cannonball.  Pow!  I heard it hit the bag.  And another one, whap! Then everything came rushing after.   

Jaydog, when you put on the adhesive and the wafer, make sure that you get a seal 100% all around the wafer, like a zip lock bag where you can hear, or feel, the two pieces "click" or lock, into place. You'll have a secure seal (bag to wafer) and practically no leaks. When you place the adhesive on your skin and wait for it to stick, put your hands over it for 30 seconds or so. This will warm the adhesive and you'll get a firmer stick on your skin, preventing leaks under the adhesive. My nurse taught me this. And, if you get a rash or itchy skin when you remove the adhesive (some people are very sensitive to the adhesive) put a very warm, moist towel on it and just rest for a minute. It will soothe your skin and give you a break.

Girlunky, your pea story made me laugh. It reminded me of a mushroom that shot out of my stoma, like something that blew out of a volcano. 

I had my loop for 8 weeks.  Initially it had a bridge over the stoma that made it difficult to change backs at first.  Once the bridge was removed, I really didn’t have any real issues with it at all.  Good luck with the rest  of your surgeries.

Thanks everybody. Unfortunately my next surgery has been postponed due to the covid 19 situation.

Phooey, I am sorry you have to wait.  But it's better to be stuck with the end ileo than the loop one, anyway.   

Yes, you should consider yourself lucky that you did not get stuck with the loop. 

Man you guys are making me nervous about the loop

You will learn to manage it, it took me 6 weeks. It just is not as easy as the end. Just three months will pass fast. Better get it once the pandemic is really over so that you won’t get stuck with it.