Skally, you have come to the right place.  Everyone here is either going through what you have just described or has gone through it.  Some of us are parents and have watched our kids go through this.  Me, I'm a mom.  My son is 24 years old and has his second ostomy in less than a year.  This is a horrible disease.  It is extremely painful. You have every right to feel what you are feeling and everyone here understands.  You are not alone.  Last year my son had burns on his skin so bad he has scars.  He also has Aspergers Syndrome, a double whammy.  Come here and read out problems and join the discussion.  We all put our two cents in!  But getting it out and talking to people who have been there and understand will help a great deal.  And in the process you may be able to help someone else.  Feel better.

 

hey thanks jeffsmom

 

A bit of a pun...

 

I guess it’s a “ shit “ for most people !

 

Hope it gets better for us all - I am feeling low & guess I felt I was just unlucky - seems like others have issues too

 

wish the surgeons would spell out post j pouch complications as I now feel I gave up the bag - for a return to UC !

 

problem is I’m really too emotionally fragile to face even more surgery ....

I had uc for a very long time too.  Most of my life.  Didn't know what it was till I was  40....pushing 60 now.  Had the surgery at 58. Worst experience in my life.  9 months of hell.  Now....  I consider myself a strong person.  I am male.  But I never skipped Dr appointments  or things like that.  Not the typical male that won't see a Dr cause of rectal exams.  I know how important they are.  But... At this point right now.... I wish I would have not done it.  They are both equal in problems.
This surgery has taken more than I would have ever imagined it could have taken from me.  Mentally and physically.  It is no picnic.  I am close to two years out and still am having problems and I think I always will.  I have tried to be strong but this just knocks you in he dirt.  The only difference is I have not had a divorce.  But I don't know how she puts up with me.  Today is my 37th anniversary.  She has serious problems of her own so it's a double whammy.  She is such a strong woman.  I used to be that way.  It went with my colon.  But... I keep fighting this and I won't stop. 
It must be tough losing what you have lost.  I don't know what to say about that. I don't know what I would do if my wife left.   I would be devastated.  And if that happened  would be alone the rest of my life.  No one would put up with me.  This disease brings out alot of anger.  I know.  I feel anger alot and have to hold it  in.  That takes a toll to.
I can say the SOS you have heard before but it won't do any good.
I will say you are no  alone.  There are some of us who feel the same way.  Depression.  That you have to fight.  Once it gets a grip it's almost impossible to get rid of it.  I feel it edging in everyday.  I fight it.
You are no  alone.  At least in your fight.  I am fighting it too.

I think they do, but we don't always listen with both ears.  We think that surgery is the be all to end all and that is not always the case.  My son has had so many complications that our surgeon has sent us elsewhere.  Every time he would walk into the room, his eyes rolled behind his head!  Keep,talking here and someone will have an answer for you.  Hang in there!

 

Hang in there.  I had a lot of problems the first year or so.  I also suffer from clinical depression and anxiety which are finally under control with meds and supplements and therapy.  Are you getting any help for your mental issues?  After 10 years with the pouch, I can say life is pretty good.  Of course there are always the minor inconveniences that "normal" people don't have to deal with.  I am sorry you are going through all this at once, I know it can seem overwhelming.   I wish there was something I could do for you.  Just take it one day ... one moment at a time. 

Keep grinding, once everything is done and dusted you'll come out stronger person. You've just had a major operation, which is quite a traumatising experience for an individual, so much so that it can affect a persons self confidence. Not many people are going through your pain and  if they were to suffer the same fate as you they would probably fair worse.

I can definitely relate to the confusion; when I was poorly I wanted to know what caused me to be so ill, but not even the doctors can't give you a definitive answer, if they could, we wouldn't have this forum. So there is no point in dwelling on that question since it's not going to be very productive. 

I had alot of complications after first surgery in 2008 and spent 10 weeks in hospital. I had two daughters under 5 years old as well. When i finally was well enough to come home i went through horrible depression. I never wanted to leave the house or even do things with my family. It financially drained us. I went on meds for depression and anxiety for about a year and got better. My marriage never recovered though. We divorced almost 3 years ago. Get along fairly well now but both have moved on. I have dealt with all kinds of issues with my jpouch since original surgery, having surgeries and procedures but nothing has worked. I finally met with the great Dr Remzi and he vowed to redo my pouch and get on with my life and a new functioning jpouch. This will happen in October and I cant wait.. I get down every now and then but i always remind myself it could be ALOT worse. I continue to move on and live for my 2 daughters that are 9 and 8 now. If you ever want to talk, i am here for you...

Your wife sounds like a real bitch. To evict you. ugh.  I wouldn't think of doing that to my husband while he was suffering so much with UC..the operations.  Hang in there. Please..

I won't go on about how many surgeries, complications and re-do's I've had over the past 50+yrs of this disease ( I'm  54 and had my 1st srugery at 2) but I will say that this is not a disease for wimps. You need to be a bloody champion boxer to win this fight on all fronts. We battle hundereds of physical issues from the original disease that brought us here and the poor physical condition that it put us into (malnutrition, underwight, anemia...) to the emotional trauma of having huge chunks of organs yanked out and our plumbing rerouted to "homecoming depression" that hits when we leave the saftey and understanding environment of the hospital for a sometimes very unhospitable home and family...

Do not expect people to understand you, they won't...they cannot...and never will until they get their colons yanked out too (hope not). Expect to fight the good fight and win.

You will...we all do in our own way...it is called surviving and living to tell the tale and then going on to help others who then need us.

My heart goes out to you.

Sharon

Well said Sharon.

And sending best of hopes to skally...hang in and try and stay strong.

Thank you for your responses 

 

its real hard - but I keep trying

 

just a couple of of other questions 

 

I now get a sensation just inside my anus like when I had uc , like an itchy spasmodic razor blade feeling which makes me want to go - is this right ??

 

secondly my butt gets wet and makes me sore but no sign of any stain / faetal output, just like a wet mucous - no stool leakage but still spiky & sore - is this normal ?

Lots of people do...it is among the fun symptoms and side effects...it could be anything from  yeast (the itch) to mild irritation on through to a fissure (a slight crack in the tissue that burns like heck) to an "itis" (cuffitis...)...plus a whole lot of other things..

I would aim for the the simplest solution first and try some topical creams that cool and protect...I used an aloe based gel with built in local  anasthetic on my poor angry stoma when it burned and ached...I got it in the sunburn section of my local drugstore...came in a clear tube and it was either blue or green goo...cheap and very effective.

The others on here will give you better suggestions but for now that is all I've got.

Sharon

ps. thanks and how are you doing Josh?