Few questions

How many times a day do you empty your loop ileostomy bag?

Does the mucus discharge from the bottom get less over time?

How long before you can eat normal meals?  My son fills up easily and gets a bit nauseous after eating. 

Original Post

Hi,

I currently have a loop with a diverted J pouch since 10/15. I have found that the discharge from the bottom of my stoma has gotten worse (more discharge) over time. This could be the thing that pushes me to have the J pouch removed and an end ileo formed. It has become harder to place the barrier ring around this area b/c all the “wetness”. I have no idea what determines the amount of discharge so this could be unique to my situation. I have always had discharge rectally and this remains pretty constant. If the rectal discharge lessens or stops, this causes me to feel nauseated so the rectal discharge is a good thing for me even though it is annoying.

If I drink a lot ( which I usually do); the bag fills up pretty quickly. I guess I must empty around 10 times a day. I will empty as soon as I “feel” volume in the bag so I might be able to go longer but see no point if I have access to a toilet.

I was very cautious with eating for the first month and remember having some nausea then too. Probably by 8 weeks, I became more daring and slowly started adding salad and peanuts/seeds in small quantities. I chew chew chew most of the time to make stom’s job easier. My stoma really is amazing and has handled everything I have thrown at him. 

I hope things get easier for your son over time. I hope he has an amazing stoma too!!

When you say discharge from the bottom, do you mean bottom of stoma or from the anus?  Discharge from the anus is actually a good thing, as it means the gut lining still has functioning bacteria and is still replacing dead skin cells.  It will decrease over time as it realises there is less wear and tear as food is not passing through, but the gut being active in this way might be a good sign of he going to have a jpouch soon.

 

If you mean discharge from the bottom of the stoma that is worth mentioning to your doc, as could imply some sort of issue or infection.  Stoma should be nice clean pink and well pronounced.  It's basically anus in a different place, you shouldnt really have leakage.  That said it is a major op, sometimes the loop isn't as tight as it could be, and sos any output should come from the centre and end up in the bag. Sometimes a mild infection sets in, so while not necessarily anything to panic about, it's probally worth mentioning

Thanks for the replies. Yes I was referring to mucus discharge from the rectum. My son is “temporarily” diverted and finds it very annoying.  I know some mucus is normal but his seems excessive (5x per day). 

He is eating a bit more and has a bit more energy. He still cannot  gain any weight though. Is it generally difficult to gain weight with the loop ileostomy?  He is so very thin 5’10” 105lbs

I usually have a little rectal discharge every time I sit on the toilet to empty my bag. I always have tissues in my underwear because who knows when some extra discharge will happen. The discharge was very bothersome to me but now I have just become accustomed to it. As was mentioned before, it is not all bad because I feel sick when it lessens or stops (mostly  b/c of antibiotic use for other reasons)  

I haven’t been able to gain weight with my loop ileo although I can’t imagine what would be the difference between an end and loop ileo in regards to gaining weight. I just find it interesting that neither of us are gaining weight. I may partially be to blame because I drink when I eat.  As long as my weight stays within 5 lbs of my new “normal” weight, I don’t worry about it. Of course I am only 5’4” and 105-110 pounds which is way different from 5’10”!

Does your son already have a J pouch or is he on his way to getting one? I had my J pouch since 1992 and it was the best thing ever! Unfortunately, I developed iron deficiency anemia and fistulas so my diagnosis was changed from UC to Crohns. I was really sick at the time of my ostomy surgery so that is why I didn’t have the J pouch removed then. It is harder to go back into surgery when life isn’t that bad even though I know an end ileo will be easier than a loop. 

Best of luck to you and your son. I know it is no fun being the patient or the parent. Both can be a very stressful position to be in!

My son has his jpouch and it was working great for about 18 months after takedown. Now he has chronic antibiotic resistant pouchitis as well as some separation at the anastomosis. He started entyvio for the pouchitis and the surgeons will do some more tests to see if they can do an advancement to fix the anastomosis. Then he can decide if he wants to fix it, leave it, or remove it. But right now he needs to focus on eating and regaining his strength. Poor kid has been through hell. He is just 18. 

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