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L
Anyone,
It has been two weeks now after the 2nd surgery. How am i feeling miserable!!!!!!!!!!!!!!!
this surgery included removing my rectum and to make the j-pouch( has not yet been connected).
My reason is first I have this leakage coming out of butt it not stool, its not blood, its kinda like mucus consistancy ( sorry to be so descriptive and graphic) but this discharge is really putting a # on my bottum. It comes out all of the time without any kind of notice it just comes out its also some what watery. WTF is this normal anyone remember haveing such a thing happen before the final surgery. I went to see my doctor about this and she said its perfectly normal. WHAT she also explained that this will occurr until the final surgery. I cant believe I have to live like this for 3 months are you kidding me, I am already about to lose my mind.She said this is good practice for when the connection happens. I was told to hold it as long as i could and the use the bathroom and push as hard as I can. Im sorry to me something does NOT sound right. This stuff, the output is so unpredictable,I am worried if I cant hold this how in the heck can I hold the real thing?????????????? I am alo having one heck of a time keeping this ostomy on since the surgery. It just wont stay since she used the original stoma i thought this was going to be a peice of cake, Boy was i wrong.
I need to know are these things normal the leakage, trying to keep on this ostomy, and also what in the heck is lomotal not sure if this is the correct spelling or not but what is it??????????? I though it was just regular immodium but please correct me if i am wrong. Any input would be great LJK

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rachelravenrachelravenMember
The mucus is normal. It will slow down over the waiting months. My surgeon used my mucus tapering off as his cue for when I was ready for takedown. I just wore a pad til it slowed down.

I was not told to try to hold it or push very hard like yours told you (not sure why they'd want you to push so hard?), but I was told to do Kegel exercises, and you should, too. They will keep your sphincters strong during a time when they're in not being used.

http://m.wikihow.com/Do-Kegel-Exercises

Lomotil is a prescribed drug with controlled substance legality. It acts as an antidiarrheal. The diphenoxylate part of it acts like a narcotic and slows down the gut; the atropine part slows the gut and dries up fluids. You would take it as your doctor prescribes it, or talk to your pharmacist. Immodium is over the counter and works as an antidiarrheal. You would follow the box's instructions on that one.

A wound care or stoma nurse can help you with your appliance issues. Ask your surgeon to refer you to one. Most hospitals staff one or more nurses who have a specialty in that sort of thing.
rachelraven
L ljkMember
Hi Rachel
Thanks for responding! Also, the information you provided is very helpful. I have already scheduled the final surgery 8-12-13 and cant wait. Hoping and praying i have no problems( as I am sure we all do). So when they do the final surgery what was given to you to thicken things?I completely lost it last night thinking I made the wrong choice,the pain in my bottom was over the top, and ect. I called the clinic they pry think I am crazy. Just waiting for a phone call from them hoping I did not stir things up by overreacting. Goodness what have i done? I was tired of the pain and i could not handle it bottum line!
L
L ljkMember
Hi Squid,
Thanks for responding. I was not told this was going to happen. I think if informed by my Dr. I would have been more prepared. So this does not last long? I know i am only 2+ a couple days out maybe I am expecting too much too quick. It just is such an annoyance and it HURTS my bottum. I just lost it. Any other advice is appreciated.Thank you again!!!
L
P PluotMember
Do NOT push as hard as you can! Wow, cant believe a surgeon told you that. You should never push hard with a j-pouch, especially one that is still healing.

Practice using your sphincters to "hold in" the mucus discharge from the pouch. The mucus discharge is totally normal. I was lucky that I was "continent" with the mucus from the beginning, but a lot of people have it leaking out like you do. Mucus is much harder to hold in than actual stool. Practice your kegel exercises, wear a pad if necessary, and don't stress.

Lomotil is a different drug that serves the same purpose as Imodium. I would try Imodium first because it's over the counter and has fewer side effects. The point is to thicken the output coming out of your stoma to make it easier to manage and also prevent dehydration.

I know how you're feeling, I really do. I felt like a total pro with my end ileostomy and the ANNOYINGNESS of the loop was a total surprise! I took about a month for me to figure out that I need to take six Imodium per day and wear an ostomy belt (never needed it with my end ileo) to keep from leaking or getting dehydrated. I still empty more often than I needed to with the end, which I find annoying, but other than that I'm tolerating life with my loop until takedown.

Good luck!!
P
L ljkMember
Ok I will not push as hard as I can, that is truly what I was told to do. The office did return my call from 4:00 A.M. this morning. The nurse said maybe a enima was required to flush the mucus. Have not herd back from them yet she was going to check with the doctor. They of who I have asked said that this is certaily the hardest part of the surgery, Lord I hope so this is kicking my ass. Thank you so much for responding that does make scence not push so much for the healing part of the j-pouch, not sure what her reason is for that. Were you given any additional or different meds to thicken your stool after the last part of this surgery? I was just wondering and how soon did you return to work?
L
skn69skn69Member
I work a maxi pad during the 5 months before they removed my colon (they had just diconneted it from the ileum to create my k pouch) so I had the added bonus of a spastic colon with all of this browish-green mucus (TMI?) pouring out of me...I was miserable too but it tapered off rather quickly and with a pad and some crampish warnings I got along ok...I found that an antihystamine did a lot of good to dry it out so that was my route...that and gravol to calm my colon along with an antispasmodic...
Ps..hot baths or a bidet help a lot.
Sharon
skn69
rachelravenrachelravenMember
I never needed thickeners or antidiarrheals, even with my loop ileostomy. Metamucil made it too thick, and I prefer a bit more of a liquid stool, if I can get it (something someone in the beginning J pouch stage probably would never guess of someone with a pouch, but I'm continent even with pretty liquid stool; always say, Sphincters of Steel!)

You may have luck with Metamucil, though, as many need it and find it helpful in bulking up their stool. You can use it with the ostomy, and after, with the pouch.

Where's your pain? Rectal? I remember in the beginning, I'd have this odd, spasmy, rectal "pain," before the mucus would just blerrrg out, but it wasn't PAIN, just weird discomfort, and once the mucus was out, it'd be done.
rachelraven
P PluotMember
It sounds to me like the people you've spoken to so far are just not very familiar with j-pouches... happens sometimes... I had a whole conversation with my surgeon's PA once about discharge from my j-pouch (not hooked up) and she asked me if it had a foul smell "aside from the usual poop smell"... umm, there's no poop in my j-pouch!

Anyway -- I wouldn't do an enema either, at least not without talking to your doctor. If the mucus isn't coming out and it feels like it needs to, that could be a sign of a stricture, but it sounds like the issue is the opposite right now, that it's coming out freely. So: pad and practice kegels.

I was told to start with 3 Imodium per day and increase or decrease the dose depending on how much output I had. I eventually went all the way up to 8 per day (that is the limit) but that slowed me down too much, so I settled at 6. My GI also wrote me rxs for Lomotil and Tincture of Opium but I ended up being OK on Imodium only.

You are definitely in a rough time. I remember how ground down I felt after the second surgery. The first surgery was very easy on me and I felt amazing. The second surgery was so painful and so hard to get through. Everyone told me it would be just like the first one or maybe a little tougher... it was SO MUCH harder on me. I was miserable. However -- I ended up bouncing back much faster. It only took about three weeks for me to get my energy back, vs. eight weeks after surgery #1. Unfortunately you've got to just ride it out.
P

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