Post J-Pouch Complications - Some Questions...

Sucks donkey balls! I haven't heard that before!
Briefly: the mucous coming out of his bottom is the most normal thing in the world and everyone who had a collectomy and a stoma has mucous coming out of their bottoms. Don't give it another thought. Even if a bit of blood is mixed in, this is normal too. The mucous can be beige or yellow or white, sometimes grey-ish. I had some greenish. Sometimes I had to release it six times a day and some days not at all.
I think they will remove the bridge soon, ask the surgeon.
2. The skin around the stoma is bound to get red. You don't want it to get more irritated than that. Ask the stoma nurse to bring some stoma powder, put some on the irritated skin and blow off the excess. It works for most people.

Yes it gets easier, sounds like the worst is behind you. What you described are commplications that can happen -- I'm sorry you had to go through all that and can imagine how frightening it must have been. He's just out of the woods now but I promise that it will get easier and then a bit later it will all have been worth it.
With the bag leaking, there is always a phase when it happens a lot, lasted about 3-4 weeks for me (and I got extremely emotional about it, felt like my life was ending in poo chaos). At that point I had tried out all the different kinds of bag systems and figured out what worked for me and it was stable for me for the whole 12 months I had the stoma.
Other people here are going to chime in with their experience and encouragement too....

Thank you guys very much... that is encouraging. 

We do have nurses that come but they have only come once and so far they wouldn't change his bag with us because I had just changed it the day before because of the leak.  They did order us some smaller opening bags (cause his stoma is small) but I'm just hoping they will actually fit because of his bridge.  We did talk to our surgeon about the bridge and he wanted to leave it in.  My husband was 260 pounds when they did the surgery (he is down to 229 now) and so his stoma is small and very likely will receede into his skin if they remove the bridge.  Most of his weight was in his tummy... so, it was hard for them to do the stoma.

We do have some of that powder stuff, so I will give that a try for the red skin.  I think this wouldn't be so terrible if he didn't have the drains... they really annoy him.

I'm also really worried because we are in the path of the "frakenstorm" that is going to hit the east coast in a few days... and his antibiotic is only good till 10/31 and he was supposed to have nurse visits monday, tuesday and wednesday next week but not sure if they will be able to come if we have a hurricane here.  So, I'm worried we may run out of supplies.  Hopefully the weather won't be too bad on Monday and I can call around to his various care givers and see if we can get more supplies quickly.

I wish we had more help...but he is from Denmark and all his family is there.  I really don't have any family other than my mother who is pretty ill herself.

 

They should have STARTED with the drain in place if it wasn't there already. There is bound to be drainage and run-off of bodily fluids after the surgery, and it has to go somewhere... the body can only absorb so much, which is why the drain is in place. Once the drainage goes consistently below 75mL per day then they can take out the drain. I woke up from surgery with a JP drain coming out of my belly opposite my stoma, and I went home from the hospital with it still in. It was draining between 400-500 mL per day for the first week before it started simmering down. I had it removed ten days after surgery.

1) B'Dereh is right - the mucous coming from his bum is normal. What drained out of my J-pouch when I sat on the toilet looked exactly like what was coming out of my JP drain for a couple of weeks. After that it turned milky clearish-white. I currently empty this type of mucous from my J-pouch - what looks like about a handful - at least few times a day, and I am over three weeks out from my surgery. And even a small amount there does still feel like I really have to go, because the J-pouch doesn't realize it's new role is to STORE waste. Since it is made from small intestine, and small intestine's job is to just constantly push food/waste through, it will take a while for the J-pouch to learn that it doesn't have to push everything through right away.

2) Yes, irritation around the stoma is also normal, unfortunately. It is made worse when it is exposed to any waste output from the stoma. This happens when there is not a tight/close enough seal between the wafer opening and the stoma.

Make sure when you/he changes his bag that there is no exposed skin between the edge of the wafer hole and the stoma. (First make sure you have supplies that fit properly - the proper fit should leave no exposed skin.) If there is exposed skin, then when you change the bag before you apply the wafer, use a thin ring of stoma adhesive paste around the back inner edge of the wafer hole where the stoma goes. After you press the wafer in place for a minute, the paste should expand and come out from behind the edges of the hole a bit to create a sort of "turtle-neck" effect around the stoma to create a nice seal. If you have already applied the wafer and still see exposed skin, you can also use a wet finger to dab some of this paste over the exposed part - it works like a barrier to protect the skin. Protecting the skin from making contact with any output is the biggest way to prevent the skin irritation in the first place.

If the irritation is already there, then just use the little skin barrier wipes they gave you to just dab/wipe on the red irritated part before you apply the bag. Let it air dry before applying the adhesive wafer. A hair-dryer on low/cool setting from kind of far away can really help dry the area. (I find my stoma likes to ooze moisture in all directions which makes it really hard to keep skin area around it dry during bag changes.)

The powder is supposed to only be for open wounds. If the red irritated skin turns into an open sore, then apply plenty of stoma powder to the open part to protect it from the adhesive. I would do this after you have already used the skin barrier swab to dab on whatever skin is still red and irritated. I have the same problem, so I do I do it all in this order:

1) Remove old bag and wipe away any waste with a clean paper towel.
2) Use the skin barrier wipe to dab on any red/irritated skin.
3) Use the hair dryer from far away to dry the whole area.
4) Squirt the stoma powder liberally on the open sore and blow away any extra powder. (But he doesn't need any powder if he don't have any open sores.)
5) Apply a ring of paste to the back edge of the hole in my wafer (a sticky process).
6) Make sure the stoma area is still dry or the adhesive won't create a proper seal - dab with a paper towel or use hair dryer again if necessary.
7) Apply the wafer around the stoma - press and hold it there for a minute to ensure a good seal (the adhesive is triggered by our body heat).
8) I use a two-piece system, so at this point I can still check for any exposed skin and apply extra paste if necessary.
9) Attach the bag to the wafer and make sure the clip is in place.


Trust me. Things will DEFINITELY get easier. I started feeling a lot better around two weeks, but a lot of people say they start feeling better around week three. It may take a little bit longer for him since he had some post-op complications. Hopefully as he recovers and starts gaining his energy back he will be able to take more of a role in taking care of himself so that you can feel more confident leaving him alone. For now just let him sleep as often as he can, and encourage him to get up and walk at least a couple times a day. Sleeping and walking are the two things that will heal him up the fastest.

Feel free to come back with questions any time! Good luck and keep us posted!

I too was taught that stoma powder can be used anywhere. If your skin is dry and you put stoma powder on...then it doesn't brush off then you need to stoma powder on that spot.

In my experience, what you are describing is perfectly normal. I actually had a couple of normal BM's from my bum after I got my ileo.

I have also had redness around my stoma. I use stoma powder and that seems to settle it down.

When I was in the hospital after my surgery I had some issues with leaking (and that was when the stoma nurse was helping with the change). My stoma is also very small (3/4") and doesn't stick out very far. My nurse recommended a convex system because it makes the stoma stick out farther. I use a two piece Convatec with a convex flange. Since making the switch I have had few issues with leaks. I don't use paste or eakin rings, etc. I just use a bit of stoma powder (wiping off the excess). I heat the flange for a few seconds with the hairdryer and apply it to my dry skin.

I also use Sure Seal rings for peace of mind. The one time that I did have a leak when I wasn't home, the sure seal contained it. So.....they make me feel much more confident.

Good luck. It will get easier.

hey amethyst I just wrote you a long response to your post about your husband's appetite. But then I read your post here. Those iv antibiotics can seriously wreck havoc on your body. I had them in the hospsital and at home through a picc line also. They ruined my appetite, and also I am sure they were what caused me a lot of emotional distress. So I think your husband is definitely affected by the potent drugs he is on.

As for the butt discharge - totally normal. Its so unfortunate that doctors don't seem to tell anyone to expect this. But if it becomes very foul smelling get ahold of your doctors... as claire said.

Did he have one, two, or 3 step jpouch surgery?

Also - he may need a convex wafer. Ask your ostomy nurse about this. And to alleviate the redness around the stoma, particurly if the hole in the wafer is too big.. you can apply stoma powder, kind of in a ring around the stoma where you think it is leaking through... blow it off. Then dab the powdered area with a barrier wipe. Do that several times in a row and you will build up a crusty like film that the stoma output can't break through the skin on.
hang in there. It will get better. for him and you too. You sound like a wonderful wife!
best wishes

Sorry to hear about your problems... I'd have to say he has already turned the corner and is 15x's better than he was over a week ago. They took his blood work yesterday and said they would have the results in a few hours and if anything was not looking good they would call us... but haven't heard anything. He also has not had any sign of fevor which I'm pleased about. He is also totally off his pain meds.

Only thing I'm still moderately concerned with is his ostomy output and his blood pressure. But I think maybe the blood pressure is just lack of activity. He is staying well hydrated I think.

Amethyst, I would say if his bp is on the low side, that is normal. It's great to here he's doing better than last week - that's what everyone expected so your husband is more or less following his version of the text-book case study. What worries you about the output? Is it very watery? If you think he is loosing too much water through the stoma, this is definitely a possiblity and there is a danger of becoming dehydrated. When I got the loop stoma, I lost liters and liters of water and couldn't understand why I felt so terribly awful, weak, dizzy etc. It did not matter how much water and tea I drank - it all came out in the bag. The only thing that helped was to take immodium and only at that point did I start to feel more normal and stopped losing so much fluid through the stoma.
Is that sounding like what your husband is doing now? 2-3 immodium throughout the day will take care of dehydration problems.

Thanks... he is actually pissing me off so much right now. I can't fricken get him to eat or drink what he needs... His bp is still hovering around 88-90/60 and he won't drink ensure... he won't drink the pedialyte. He took one sip of the ensure and said yuck I'm not drinking that. He like doesn't care that he is not hydrated enough. I dunno what to do... we got into a fight a little while ago cause he is like I am fine just drinking water... his pouch still gets watery no matter what we do. He is taking immodium and he is eating pretzels, bananas, mashed potatoes but it seems like the more fluids we give him the pouch just fills up with liquid... it will get thick clumpy food in it but that will stay at the top of the pouch and then the liquid is in the bottom.

Last night it got very thick soupy for the first time but then once he starts getting ready for bed and not drinking all night anymore its right back to liquid.

I'm so frustrated... I can't shove stuff down his throat.

Ah, you are probably right. Maybe we are doing that. I will try making sure to give him the immodium longer in advance.

Thanks for letting me vent... he did apologize and he is drinking part pedialyte and part water now to delute the nasty taste. So, I'll take that. :) He also drank half of the ensure I gave him and said he would drink the other half later on.

I did tell him he was acting like a baby... lol. Hopefully he'll continue to cooperate now. :)

Just wanted to post an update here...So, since the 1st... things have greatly improved. I'm amazed at how much he progresses just day by day. He has had another CT scan, a visit with the infectious disease doctor, drain checks, a visit to his surgeon and lots and lots of antibiotics. :)

He is up and moving around now...he cooks for himself and can even wipe his own bum now. He even went to the store with me tonight and actually came in with me and didn't sit in the car!

Things are looking ok... they believe his abcesses are almost gone in his tummy. They took out his JP drain today, so he is really happy about that. Still has 1 drain in his right side that hopefully they will take out next week. Still on IV Invanz for the moment ... they don't want to take him off that till after all the drains are gone.

Sadly though, his surgeon says he can't have his takedown surgery this year. With all the complications they want to wait till next year and make absolutely sure there are no leaks anywhere.

His blood pressure is better... I'm starting to think that my home wrist BP checker is not accurate as whenever he goes to the doctor his BP is always good at like 115/70 but when I check it with the home one I have, its like 93/60 ... so, it could be a little off. He is pretty much eating whatever he wants except for the real no no stuff like popcorn, raw veggies etc... his output is still pretty liquidy but his surgeon said that they had to place his ileostomy really high up so it will probably always be sorta watery.

Doing pretty good with his ostomy bag now... got the 1 inch convex pouches now and so far we haven't had one leak. His skin is red around his stoma but we're doing our best putting powder and that spray on it to try and help it.  His bridge is still in his stoma ... which is sort of annoying cause it makes concealing his ostomy bag pretty much impossible... he's also afraid someone is gonna open a door on him or bump into him and its gonna hit the bridge.  His surgeon wants to leave it in there as long as we're not having any problems with it being there.  Hubby was 260 with most of his weight in his stomach when he had the surgery so doc is afraid his stoma will disappear if we take the bridge out.  He's lost like 45 pounds though ... trying desperately to maintain his weight now... don't want him losing any more muscle mass.  I'm gonna go broke trying to keep him hydrated. ;D

I only have 2 questions right now...

1) Do the things you eat really come out of you within 10-15 minutes? Like he made dinner tonight that hand ground parsley in it and like 15 minutes later we saw the parsley in his pouch. I thought stuff stayed in your stomach a while? I just can't believe it goes that fast.

2) Not really a question per se, but he has developed a sort of rash around his incision site. It is a bit itchy. Has anyone else ever had that happen? The infectious disease doc doesn't think its an antibiotic reaction... they want him to go in to get it looked at but we probably can't go till Monday or so.

Thanks for all the insight here... has been a real help. :)

Post Edited (Amythyst) : 11/8/2012 8:29:23 PM (GMT-7)

Yup yup, we have tried it... and he is staying hydrated, just takes a lot of fluids. :) It slows down on and off... but my question was really more geared toward how long food stays in the stomach before it moves to the small intestines. As I mentioned, his surgeon did say that the ileostomy is high up in his track so I can't really expect it to get stiffer than a thick soup or a poridge. But don't get me wrong it is much better than it was 2 weeks ago... just curious about how fast stuff moves in general. :)