Feeling your the only one and the odd man out?

What is wrong with feeling envious of people who have all of their organs, who have never known the horrors of bowel disease and surgery to remove major body parts???? I figure that if you don't feel a bit sad, isolated and misunderstood (at least in the begining) then you are either very lucky, surrounded by some fantastic human beings or non-stick tefal!

Really...this was not a tooth extraction that we have had...it is major surgery...not for the weak willed and faint of heart...you need to be darned healthy and well balanced as all get-out to survive this unscathed (and may suffer PTSD later on)...so please, let it out...you need to in order to accomplish the greeving process...

I was Shirely Temple (one needs to be old enough to understand this reference...Sorry), a good little soldier, a real trouper going into all of my surgeries..the red-headed little girl with curls who smiled and was all eyes and teeth...never cried. By age 11 I hit the wall and no one knew why...they hadn't heard of PTSD back then...I cried for days, didn't want to leave my room, wanted to go back to the hospital and safety where I wasn't strange or different...Where I felt safe and secure.

The real world scared me, I felt different (even then) that the other kids (I was!)...

I couldn't eat like them, play like them or look like them...still feel that way 45 yrs later but I live it better now...I don't want to be them, I am me and that is good enough. (still would have loved to ask Santa for a healthy colon but what can you do?)

Cry, yell, listen to sad music and sing at the top of your lungs, walk, meditate, enroll in kick-boxing classes (wait 3 months for that) but let it out...don't expect healthy people to understand...They won't. But we will.

Sharon

I never really had these thoughts- I was happy to have my colon out.  It was practically dissolving in my surgeon's hands from inflammation when he took it out (from what he later told me), and would have perforated with stool leaking all over my body had I not had the surgery- which was elective.  Given that alternative, I am happy to be colonless and never really have looked at others with "colon envy" (I had heard of "penis envy" but never thought of "colon envy" until I read your post.) I had dysplasia and I thought of it as I have drastically reduced the threat of colon cancer whereas everyone else who has one is subject to this leading cause of death in the USA (#3 on that list if I am not mistaken).

I have belonged to support groups in which some or most of the members had all or parts of their colons removed, and in some cases partial ileum removal as well, including one guy who had colon plus a section of ileum removed, and they couldn't take any more out due to short bowel syndrome.  I actually really felt badly for that guy as I felt he was "alone" and fighting more of a battle than the rest of us are.  But the existence of support groups would tend to negate these feelings and I suggest you pursue a CCFA support group in your area - if you live in Philadelphia there is surely 1 or more.

In addition to the very useful things Sharon and CT have written, remember that you have a very new pouch. For example, most J-pouchers enjoy essentially unrestricted diets.

At first, when they took my colon, I was devastated. But, I tried to look at the humorous side of it. There really is a humorous side, you just have to look! For Halloween, people at work asked me if I was going to dress up. I told them I already was, I'd point to my ostomy bag and say "I'm a bag lady!" I'd joke with friends and tell them to knock it off or I'll whack them with a sack of sh*t, and I'd always add....literally!!! It was much easier for me to cope if I infused it with humor. I loathed the bag. But I am so, so happy with my J Pouch! I'm glad I live in a time with such great medical advances. I was a little envious of 'regular' people at first, but it went away as I adapted to my new normal. Now my new normal is great!!! You will be okay!!! It's a rough and rocky road and just when you think you don't have the strength to go on, you find it. Mine was November, 2015. That was when I was going to have my takedown. So that was what I focused on. But, try humor! Humor has never failed me. I wish you the best!! Nora

I know I fall short of assuring others that have a rough go like we've all had.  Everyone handles these things differently.  I'm an optimist, happy that we have surgical options that literally save our lives.  I couldn't wait to go golfing the first time without my colon to see if it would help me play better.  Of course, it didn't, but it was sort of funny.  Imagine how may pros would elect to have their colons removed if it did help!  Anyway, that's the crazy way my mind works.  I also joke to my friends that losing a cancerous colon is a VERY EASY way to lose weight very quickly.  Now that I've also had my gall bladder removed, I start listing "optional" body parts .. even though I think I need all of the rest of them!

I have friends and family that have been clinically depressed and I understand they have an illness.  I've learned that me saying "be positive" or "smile" or "enjoy" probably does not help in any way, sorry to say.  

I'm not sure what is worse, though:  not being born a handsome and talented athlete or having no colon.  (kidding!)   I am very lucky to now have a j-pouch that does not affect my life now in any significant way, whatsoever, and I totally forget that I am different 99.999999% of the time.

My son felt the same after his first surgery. I would think that its normal to feel that way. How could anyone not. My son was 23 when this happened to him. A year later, he was diagnosed with PSC. Something i repeated over and overvis this. You are not your disease. Dont let it define you. Ifvyou let that happen your disease controls you. You are notvyour disease. Crsp gapoens, it sucks. And yes, not everyone has to live like thus. But you havd a life. Live it. Go Out into the world and live your life. If you dont, your disease wins and that is not acceptable. 

I Have a 12 year old cousin who is dying from a rare pediatric brain cancer. I sort of use this to put things into perspective for my son.  I know your situation sucks big time but you are not going to die. You might want to some days, but i promise you, you are not, at least not yet!  

Jeff has had four surgeries in 20 months. A lot for anyone. But he is finally living. We made him go to Disney World last year after his second ostomy surgery. It was the best thing we did for him.  He realized that he could do anything he wanted. Just carry your emergency kit with you!  While not everyone has an ostomy, we all have a life that we are meant to live. 

I hope this helps. Im sorry for your loss but know, you are not alone!

My J-pouch surgery happened April 6th, 1998.  I will never forget it and the year that followed.  At the time I had a 5 and 1 1/2 year old.  I really had to rely on my husband, family and friends especially during the first month of recovery.  I felt so guilty!!!!!!!  Since that time I have had a scar tissue stricture which landed me in the hospital for 8 days, an ileus after my back surgery that put me in the hospital for 10 days and most recently a partial obstruction which required a day in the ER 1 1/2 weeks before my daughter's wedding.  This has all happened over a 18 year period.  With each occurrence I have been so grateful I am still living and able to continue to watch my family grow and experience the joy of their lives unfolding.  I know this may sound simplistic and sappy but it really is true for me.  Time has really given me perspective.  I remember talking to someone who had had the procedure before me and them saying "The first year is really is toughest."  I found that to be very true.  Also I recently watched a beloved sister-in-law battle and finally lose a battle with lung cancer.  At her service while I was singing one of her favorite songs with my daughters at her request,  I thought how fortunate I am to be here right now, singing with my daughters and have had a disease that does have a cure.  I do not mean for this response to sound preachy and for you not to acknowledge your current struggles.  I have also had those moments of "why me."  What helped me was to have good cry, shout whatever and get back to the business of living.  Having little children around I suppose did help take my mind off of dwelling on my situation.  I wish you well ans try to let time give you solace.