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Posted 5/1/2019 3:49 PM (GMT 0)
Good evening all,

I had my ileo-anal pouch surgery last week with thr formation of a temporary loop ileostomy. I have come back today from hospital but have a question that seems to be making me anxious to say the least!

I have just been to sit on the toilet as I felt a build up of what I can describe as pressure around the j pouch region. When sitting down and relaxing my muscles, I had a large amount of discharge which seemed to go on for over a minute coming from the pouch. I looked largely like blood with copius amounts of mucus and some small brown elements to it. My question is, is this normal for me to be passing this much 'stuff' so early after surgery? Also should there be blood present in this discharge?

Any help would be appreciated!

Regards.
Posted 5/2/2019 2:27 AM (GMT 0)
I think it is probably normal at this point. I would give it some time. If you google loop ileo images you will see that it has 2 ends. It goes up and it goes down, things can pass through. We all have some discharge, and you're soon after surgery. I'd give it some time. When you follow up, ask! You're only a few weeks to recconnect smile It's not easy with the loop. it wasn't for me anyway. I know some people have a better experience, and I hope yours is, but the loop was tough for me, for many reasons. When do you follow up with your surgeon?
Posted 5/2/2019 2:59 PM (GMT 0)
Hi notsosicklygirl and thanks for responding to me.

I thought as much and was told to expect some 'output' post surgery as things will go from one stoma into the other. I guess I just wasn't expecting it so soon. My follow up will be within 4-6 weeks with my surgeon. I'm still getting used to how the pouch feels. This may sound strange, but I feel like I'm not able to pass urine without opening my pouch.

It's all very new and strange to me at the moment!
Posted 5/5/2019 11:08 PM (GMT 0)
At first, things are strange with the pouch. I was unable to pass wind for quite a while without the occasional issue. Things have gotten much easier thankfully. It's a big adjustment, but once it's complete, it's a lot easier than dealing with UC. Just my opinion of course. I no longer deal with drugs and doctors. It's great! Nothing is better than not having these issues at all, I'd love to be free of IBD, but at least now I've gotten away from illness being a cornerstone of my life.
Posted 5/7/2019 6:48 PM (GMT 0)
Thank you for the response again. Okay that's all positive to hear. I am still currently recovering from the stage 2 procedure and letting my J pouch heal while passing stool through my temporary loop ileostomy. Things are difficult with the loop for sure! It's nowhere near as simple as the end ileostomy I'm used to. But I'm hoping I will have a date for final takedown surgery soon. I kinda want to start using the pouch actively and think the quicker I adapt to it and how it works the better.
Posted 5/9/2019 11:16 PM (GMT 0)
Hi V -
My surgeon was very pleased that I was passing the brownish gunk from my bottom after J pouch formation and colectomy, because, as he said, it meant the bottom part of my system was alive and functioning and still producing mucus.
With me, sometimes I produced this several times a day, and then I might several days without eliminating anything from my backside. Congratulations on your surgery!
Posted 5/14/2019 11:32 PM (GMT 0)
Hi Songlady!

Thanks for the info. Yeah I seem to be getting the same from my back end with the same sort of frequency.

I have been having a nightmare in terms of my front abdominal wound as it opened up and was leaking a fair amount of serous fluid. I've had to have a drain on now for a number of days.

My loop ileostomy is also proving to be a real pain too! It's got no end of sore skin around the edges and still isn't producing anything but real liquidy output.

Frustrating to say the least!

Cheers. V
Posted 5/15/2019 3:26 PM (GMT 0)
At least it's temporary. My loop was a nightmare the whole time, all liquid, very fast transit. You have to do your best & try a lot of products... I used a one-piece with my loop the majority of the time. Not because it worked better, not because I liked it better, but because it was so much faster and easier to replace and I was replacing constantly. I tried so many rings and tapes, no luck getting a better result. The end ileo was a piece of cake... You only have a few more weeks really. it's been 3? I waited about 7. smile
Posted 5/15/2019 3:35 PM (GMT 0)
Notsosicklygirl,

Absolutely agree with that. My transit time is so quick now! I'm currently using a light convex sensura mio bag with a salts seal and that seems to be working for me.

I hope you're right about the not having to wait too much longer before final take down. Still just worried about my front wound which seems to be leaking still, 3 weeks after surgery.

Regards.
Posted 5/21/2019 6:13 PM (GMT 0)
This certainly happened to me. I called my surgeon's nurse in panic but she assured me it was fine. I'm not yet connected but I'm passing white mucus now. It seems to be especially when I drink much water during the day, I pass mucus in the evening.
Posted 5/23/2019 6:21 PM (GMT 0)
Hi Andrina,

Exactly same here! I don't recall any connection with the amount of water I drink and when though.

I have noticed however that my stoma output is far more liquid with the loop ileostomy as opposed to the end!

Regards.
Posted 6/1/2019 6:00 PM (GMT 0)
I think that's normal. When are you due for reconnection?
Posted 6/1/2019 7:35 PM (GMT 0)
Andrina,

I haven't got a date for re-connection yet. I'm so done with this stoma already! Had an awful leak the other night (not to scare anyone from having this surgery!). I'm hoping it will be within the next month or 2.

Regards.
Posted 6/3/2019 4:07 AM (GMT 0)
I've had leaks too and I thinks it's all part of the learning experience. But honestly I don't miss my stoma and even though I was taken down 5 days ago I've been able to sleep through the night.
Posted 6/4/2019 3:12 PM (GMT 0)
Andrina,

Yes it certainly seems that way. I had virtually zero leaks with the end ileostomy. This one is so different for me.

I'm so glad to hear you've had your take down surgery and it's going well so far. You seem to have had very little time between your surgeries which is great! I can't wait to have the takedown surgery and start adjusting to the pouch.

Regards.
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