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.
Replies sorted oldest to newest
Good to hear from you. Feel better soon and best wishes for a speedy recovery.
Yikes you have all the fun! Good to hear from you but so sorry about the various problems and hope the doctors really do think this is all within the normal range. Hang in and keep us posted. janet
Glad the surgery went well, but wow! Not so great complications. Spinal headaches can be common, but this far out is not. I hear that the blood patch works pretty well though.
You deserve a break. I hope this is all sorted out soon and you are on your way!
Jan 
hi guys. got home last night. headaches are still lingering but not horrible.blood in urine i think has decreased, more dark brown than red. still having discharge from the butt. the redo was hand sewn with mucousectomy so i understand its common early on.
Best of luck, Poucho!
Sounds like things are evolving in the right direction...I am so glad.
Time is the only healer for all of this stuff...keep the diet light, walk as much as you can and do not bend, stretch, twist or do anything silly like carrying bags, boxes or kids.
Good luck...Things will be better in a week or 2.
Sharon
The worst is behind you. It can only get better! Hang in there!
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
I hope you are feeling better Grace
speedy or at least steady recovery poucho! late to the party, why and how are they doing a pouch redo? surgeons I have spoken to suggested they would never redo a jpouch? thanks, and best wishes.
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
Have you been doing pelvic floor and care exercises? They are essential for maintaining control. I went to a PT for therapy. Miserable but helped.
Could you you use your cell and Internet when in CC?
Glad you are feeling better. Long haul. Janet
I leaked for a while after my mucousectomy it once hooked up everything was fine.
great so soon you can go back to work!
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.
Sorry, just a few days. Pelvic floor exercises sound like a good idea. What did your surgeon say? I'm sure he has seen this before.
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
Aches and flu-like symptoms have a pretty good chance of being something other than pouchitis, and something that doesn't respond to antibiotics. Perhaps flu? I'm not surprised that Cipro/Flagyl isn't helping.
I am down to one pain pill a day and feel ok until evening when its time to take the other dose of c/f that's when I feel flu like and tired
So sorry you are feeling bad. I hope you feel better soon. Age and the pouch and other stuff that goes with aging - not so fun.
I had a manometry test and my sphincter muscles are working at normal capacity, so not sure kegals or other pelvic floor things would work?? aren't they only for sphincter muscle issues?
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
the ostomy nurses would be the ones to talk to about pelvic floor? I talk to Colleen all the time at Cleveland Clinic..
you are right, the ostomy nurses aren't the ones to talk about pelvic floor disorder--that would be more your regular GI doc. that said when i had it my gi doc didn't pick it up. maybe pelvic floor isn't the problem. sorry but i don't have any other suggestions. keep us posted. jlh
I don't know what it is, all I know is the manometry said my sphincter muscles were functioning normal, so not sure if its a nerve issue from the mucousectomy or its just a lot of mucous and its slippery and its just difficult to hold....god I hope im not crapping my pants when they hook me up in March
Trust me, losing control is a terrible experience so good to figure it out now. Maybe a PT visit could be helpful.
We are pulling for you, Poucho. So sorry you are dealing with this.
Every person who's posted about experiencing this has said that it didn't predict incontinence after takedown. The situation sounds like an uncomfortable nuisance, not cause for worry.
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!