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well i had my redo with Remzi 6 days ago at Cleveland Clinic.Surgery was 7 hours and went well. So far the pain in my abdomen and incisional site is doing well. I have a few other issues now though, nothing major i don't think.Every time i get up to try and walk i get a crushing migraine and neck pain. They are assuming now that it is from the epidural right bore surgery. I hear its common. thy are giving me Fioricet now but if doesn't subside my tomorrow they with do a reverse epidural called a blood patch to fix it. And the other issue is a lot go blood in my catheter . I originally had stents in there and told me thats what the blood was caused from. well a few days ago they took the catheter out and i went all day without peeing.couldnt pee on my own so they put catheter back in where it has been since. still bloody urine. My colorectal team and Urology team don't seem very concerned either and stated it could be a few weeks before i don't see any blood . Friday and Saturday I did start throwing up so they gave me the beautiful NG tube took it out yesterday along with the JP drain. Been on clear liquid diet all day again with no issues so far. Of course I have the usual backdoor brownish discharge still but started seeing decrease today. The pain in abdomen is like a 2 and the headache pain is like an 8 at its worse,but typically hovers around 4-5 unless I'm walking a lot .Remzi has stopped in like 3 times since surgery and said it was a very difficult surgery for the both of us. He stated at first he wasn't sure he would be able to do it, cuz of the lower portion of pouch area had a lot of area to clean out from past infections and inflammation and due to me having a small pelvis. But in the end he feels very good about the outcome. hopefully they can resolve these migraines before i leave here, which they believe could be Thursday. which would be 9 days for very major surgery.

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poucho

hope you are recuperating ok at home and those nasty symptoms have calmed down.

 

i sent you a message/dialogue re questions about staying at CC.  i'll be heading out there on thursday for surgery the following day.  did you get it?  would appreciate your knowledge on how things work in the hospital re using cell phone or internet access.

thanks, janet

hi friends, i am 3 weeks out from my pouch redo. pain is minimal, headaches are almost gone. still dealing with mucous from the back side that leaks that i can't control. i am just hoping its not this bad when i get hooked back up in several months.cuz at that point it would be stool and not just mucous. I was told slight leakage might be there due to them doing a mucousectomy with the hand sewn technique. my worry is that if once i get hooked back up in several months if the stool from the pouch will just flow as freely as the mucus does now? next wednesday i am going to start going into work for like 2-3 hours a day and see how it goes. overall i feel pretty good, just very tired all the time

AllyKat posted:

I leaked for a while after my mucousectomy it once hooked up everything was fine.

great so soon you can go back to work!

FOR HOW LONG DID YOU LEAK?i am 9 weeks since redo and I am leaking mucous all the time. I can sometimes feel it coming and can hold it, but sometimes I check the pad between my cheeks and its wet but never felt anything. scares me that I will have continence issues once hooked up.

pouchmarx

i was incontinent, when i had the j, and needed to go to PT pelvic floor therapy.  developed my core and did lots of pelvic floor exercises.  this is a very specialized PT practice and not all hospitals/pt places provide it.  when the j pouch isn't hooked up one has a tendency to not use the muscles so either figure out what the exercises are or get a good PT.  good luck, not fun situation and i hope it doesn't carry over to when you are hooked up again.  

can you have a new pouch?? I am 70 don't know if I can endure that surgery. am almost through my cipro/flagyl  still feeling achy and flu like-although I have gotten out to play some tennis. I had been taking citalopram but had to stop because of c/f. how long do I have to wait before beginning to take citopram? I suppose when the c/f is gone  I ought to start feeling better. I do not have a dr apt til 11 jan and I will be over c/f by beg jan  I hate that I still feel so bad

 Not sure what next to suggest. The PT was very adamant that I keep my core muscles in excellent condition, and I would suggest you maintain your sphincter muscles as best possible.    Perhaps keep a log of when it happens and other activities like exercising, sleep or eating and seeing if you can pick up a pattern.  Also I have found the ostomy nurses at Cleveland clinic extremely knowledgeable and helpful--phone number 216 444-6677.  Good luck, it's a miserable situation   Janet

I agree with Scott - I think you will do great with the pouch when it's all said and done.  You are in the thick of it - in the middle of it all right now.  All kinds of unexpected things happen - but you get through them.  But, when you are in the middle of it- it feels so frightening. You may be really surprised how well you do with your pouch!  Hang in there!

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