Please don’t judge me too harshly for feeling so sorry for myself, I’m just so sick of life with disease & mental health issues entering my later life

 

I had UC for 20 years & convinced myself in my sales career that positive mental attitude can overcome anything - it can’t !- just covered by saying i had a wheat intolerance - lol !

 

Being faced with a withered colon and watery diarrhoea 20 + times a day, I was finally advised my cells were changing & unless I wanted to risk cancer i should have a total collectomy

 

I did and felt horribly disfigured & disgusted with constant leaks & hideous oversize clothes to avoid bursting a watery bag, especially when sleeping !

 

my total exhaustion lead to me having to give up work as a sales director & even delivery driving proved unviable as carrying heavy grocery deliveries kept bursting the bag - so I lost my income, status & dignity really, all in one fell swoop..

 

Major depression followed and my wife of nearly 40 years divorced me

 

I was recently diagnosed as bi polar and really now struggle understanding , who i am, what is the disease and what are the mental health issues & are they just reactions to my major life changes ?

 

I recently met a wonderful nurse but split with her just days after my j pouch surgery when I was just so manic after complications with the j pouch formation that i drove her away forever - she cut me off completely

 

the following weeks my skin burned a 10 inch circle of ascoriated flesh as the new stoma was inverted given very little small bowel to work with & I bled & leaked from my bag constantly

 

the return take down surgery was delayed 5 times waiting in a hospital bed which sent my anxiety sky high

 

eventually i awoke after surgery to be told I had to be opened up and the stoma site cut away and bowel separated as the healing process had knitted everything together inside so keep imobile in my hospital bed in case i tore the new joins which were under stress given the limited bowel had everything stretched to the limit

 

6 weeks with a gaping hole healing in me did nothing to raise my spirits

 

All the scars & wounds have now healed, but my mind has not.

 

now I am really questioning my decision to have an internal pouch

 

constant watery output, my arse is on fire & I feel so fatigued that i struggle to face any task

 

I feel totally distraught !

 

the divorce is messy and my ex  wife is going through the courts to evict me

 

I JUST CAN’T COPE WITH THIS LEVEL OF LIFE ISSUES

 

My son says “ Man Up "

 

To be honest I don’t think I can .......

 

I feel totally broken, physically, emotionally & mentally !!!

 

I keep trying to push myself to go out socially, yet keep driving home in floods of tears feeling so lonely and lacking in confidence these days

 

Am I the only one to have my life disintegrate with this disease ???

 

SORRY !

Original Post

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...

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

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?

Add Reply

Likes (0)
Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×