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my 23-year-old son had his colon and rectum removed due to ulcerative colitis. it's been a week since the surgery. his doctors created a j-pouch at the same time. in about 7 weeks he'll have the iliostomy take-down.

i want to encourage him. i think he's depressed and i think he has a right to be depressed. it was a big surgery, after years of  torture. he wouldn't be alive without it. i imagine he's sad that he had to go through this, and i suspect all the drugs are having their effect on his emotions, especially as they ween him off prednazone. if i were him, i'd be wondering, "why me?"

it was hard for me, as his mom, to accept that this was necessary. i prayed for him to get better. god answered my prayers, but according to his will, not mine. now i'm so happy that my son will have his life back, and i pray someday i'll see the joy in his eyes. i thank god for this surgery. for now, and for always, i want to honor my son's feelings, and respect where he's at. but as you may know for yourself, after battling this condition for 5 years, his personality is reclusive. he's felt alone for so many of the important years of his life, i'm afraid it's a habit and may be permanent.

i sure could use some advice. how did people treat you, and what did you like, what didn't you like? what do you recommend for me?

 Reply posted for Cappy.

My 9 yr old granddaughter just had the take down and it is like a MIRACLE happened. She is doing wonderful. She wanted to show me how to do a back flip which of course she's not allowed to do. But that just shows you how good she is feeling!! Walking is important, drinking water is very important. The bag is a total pain and my granddaughter had rawness all around it which made it even worse but the end result is....a normal life. Just tell him to hang in there. Her first surgery was 13 hours long.

 Reply posted for wildcat.

wildcat,

i understand how your son feels.i am 29 years old and have both crohns and colitis ans have had it since i have been 6 years old.about a month ago i had to have surgery too and have a colostomy bag placed for a while.it is a hard thing to deal with at a young age.your whole life has changed and things you use to love to do some of them u cant do because of it.i can tell u first hand you just got to let them deal with it in there own way and keep doing what your doing and being there for him when he needs you.believe me i still cry quite often about this change in my life and am trying to cope with this big change but i am glad that i have a loving and caring family there for me when i need to just vent or cry about things.good luck with everything.hope everything gets better soon.

 Reply posted for Cappy.

hi cappy!

I see it's been almost a month since your son's surgery.  Hopefully things are looking up for him and you as well!  I am 32, I was diagnosed with UC at age 23 and 3 months later I spent 45 days in two hospitals in 2 states, almost died and then they told me I needed surgery.  I remember very well being overwhelemd by feelings of why me? Being scared and oddly having crazy anxiety about dating--which is a hard enough prospect with out the scars and equipment to explain!  When I had my surgery, my mom did her best to help me cope, but really what I needed was to heal and get back to my life, my friends, and working.  It's not that I didn't need my mom, her support was invaluable! But getting back to life and realizing the pain was gone, the urgent bathroom trips were gone, all of those things that come with having UC/CD were gone (or at least on hold forr a while) and eventually I realized how lucky I was to have had surgery and what a positive it has been for my quality of life.  I know this isn't much help, but moms are always the go-to guys that we can ask questions, tell embarrassing stories to and count on to hold our hands when we need a little courage.  If your already doing that, then hang in there, things will get better for your son and you!!

 Reply posted for stephenbsmith50.

I live far away form my good friend who is dealing with this, she goes into surgery today. She is pretty down and well more sensetive than ever. i live far and cannot visit, I couldnt call because she was too weak to talk and doesnt feel like being on the phone, what could I send her? What could someone appriciate after surgery, what could someone need? I have no idea.

 Reply posted for Cappy.

My son is 19 years old. I totally understand how you are feeling.  We just met with a surgeon.  It looks as if he will have the j-pouch surgery.  My son has struggled with UC for the past 3 years very severely.  We have watched the disease take over his life.  He needs to make sure he is home by a certain time of day/night b/c of bathroom issues.  He lives at home and goes to college.  I know he doesn't want to live at home but it beats the alternative of living in the dorms and sharing a bathroom.  I just hope and pray that the surgery brings back a social life that he deserves.  It is so difficult being a parent and watching your child suffer and struggle through these important years of their lives. 

Keep in touch. 

 Reply posted for wildcat.

Cappy & Wildcat:

I certainly feel for you both.  Though it was a long time ago, I recall being pretty inconsolable myself; it's tough laying on that hospital bed feeling that life is crashing down around you.    God bless you both.

My only other idea would be to talk to the surgeon and see if he/she has any patients in the area that could talk to your sons.  My surgeon had a former patient come by and talk about the surgery and outcome, and that was someone I was interested in talking to since it was first-hand experience/information.  If you happen to live in or near Washington, DC I'd gladly volunteer my own time. 

Prayers and Best Wishes,

Steve

 Reply posted for Cappy.

my 21-yr old son has had CD since 02, was in remission until this summer. He had another scope today and were told the stricture in his rectum is no longer amendable to medical tx and we saw a surgeon an hour later. He will not be returning to Northwestern on Sunday-but will be planning on having an colostomy. I too pray for acceptance. I wish I had some answers too. I feel helpless that I cant fix this or make his pain go away. I know his quality of life will be better but right now he is devastated. Maybe it will just be helpful for us to talk and we can find our way together. I was given a book called Great Comebacks written by Rolf Bernischke- excellent book about ppl recovering from surgery. I read it in a couple hours. He wont pick it up. I have all the links to the support groups etc- but he wont check them out. I have been trying to provide the support the months leading up to this.. but I quess until they are ready- there's not much else we can do. Believe me when I say- I know exactly how you feel.
Sue

 Reply posted for Cappy.

Cabby:
Interesting question, and one that, given that Im not a mental health professional, Im not too sure how to address beyond giving my own humble opinions....

From my own experience (I suffered from UC for 4 yrs and had the j-pouch surgery 20 yrs ago), it seems that being able to talk about the whole thing (e.g. illness, surgery, recovery, etc.) is the key; in particular, talking about it with other IBD sufferers that can relate to the physical and mental anguish that these diseases cause.  In fact, I would say that my participation in this forum is likely attributable to my ongoing need to connect to people like me in an attempt to close the loop with respect to my illness and recovery.

With all that said, I can suggest three venues for communication off the top of my head:

1. This forum.  Encourage him to join, read, and post his own questions and responses.  I have no doubt that there are others reading this that would love to hear what he has to say as a recent UC sufferer and j-pouch patient.

2. Your local Ostomy Association chapter.  I went to couple of meetings after my surgery; something I found especially helpful as I was dealing with the temporary ileostomy.

3. CCTeamChallenge.org website.  This is something new to me that I found out about through another UC sufferer.  They raise money for IBD research by participating in half-marathons around the country (e.g. like the Breast Cancer walks).  Perhaps engaging in something positive to address these diseases will help to draw him out his proverbial shell.  One of my New Year’s resolutions is to participate in race this year myself. 

Prayers & Best Wishes