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Backstory: my husband has had UC since the fifth grade. He also had mega colon at one time in his life. He was able to get through with medication and diet. He is now 37 and had a diagnostic colonoscopy last year in which they perforated his bowel and didn’t know it. On our drive home he was in excruciating pain. I took him to the emergency where they had to do an emergency bowel resection and put an ostomy in. The doctor said he couldn’t reconnect the bowel because of having UC  for so long so he had to do and ostomy. My husband is a very fit man and has always lifted weights and taking pride in being physically active and attractive. After a long discussion we decided to go with a J pouch instead of the ostomy. My husband seemed happier with a J pouch because he didn’t have the bag on his side. However he’s only about seven months out from his take down and he still has to go to the bathroom quite a bit. He’s lost a lot of weight but has now started working out again. It’s been almost an entire year of surgeries now one surgery recover second surgery recover third surgery recover. Now he has pulled away from me and he’s worried that I will leave him because of all this. I told him not to be ridiculous that I love him but he’s very sad and upset with how everything is gone. I’m just very grateful that he is still alive and with me and our two boys.

my question is: how can I help him get through these hard times and the depression. Sometimes I feel silly because I get upset that he doesn’t want to be with me intimately but I know he’s in a lot of pain sometimes and frustrated about things now. It breaks my heart to see him so sad.

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I understand his pushing people away as my struggle through the three surgeries and recoveries was extremely lonely and not understood by anyone.because you look normal from the outside but the struggles inside mentally and physically are immense but they do improve overtime and you sticking through it with him means alot and it will get better but it may take a year or two.a low dose of

Lexapro might help as well as walking and being great full that he doesn't have the bag.

I have more issues with too much weight gain and I think it is from drinking vodka with non sugar drinks which make me hungry and eat more .

Last edited by Chook2

I was diagnosed in 98 with severe UC. This is the short story.   I was put on meds that kinda controlled it for 15 yrs.  When my husband died suddenly in 2011 2 yrs later I had a major relapse no meds would help.  I heard about Jpouch & definitely wanted that not ever the osteomy bag.  I thought this would take all my symptoms away & I would live Normal, NOT.  Dr's said this is your new Normal.  It's not a easy road but, for me better than the lateral.   Some depression does go along with disease.  He has to find his own way physically & mentally.  Lexapro does help, continue to exercise & eat what makes u not get sick, this takes time & experimenting.  Be thankful for the good days.  Having a loving wife that is staying.  He has this group which is a God send.  If he has a relationship with the Lord prayer definitely brings you peace.  God Bless!

Armstrong -

This certainly isn't easy on the person with the pouch.  But overlooked, many, many times, is how challenging it is for the caregiver.  To both of you, I send strength and the need to communicate.  Probably harder for him, but hearing from you, I have to think, helps him.

I've had my pouch for 35 years this fall (58 yo).  My wife is the business.  She tells me that only my health matters, whether I'm in shape or not ... have a bag or not ... etc.  I might not show it or say it back to her as much as I should, but I do know that her love is in my corner and never leaving.  And that helps.

To your man, I still lift 2-3x/week, rock-climb, do outdoor obstacle courses and coach softball.  However, I lived through multiple surgeries on my both my gut and joints, which, at times, took me completely out of my fitness and frustrated me terribly.  I hated being out of shape and get why he is depressed ... potentially angry at this body (I was) ... and might be putting up walls a bit.

PM me if you or he wants to talk live.  Sometimes venting feels pretty damn good.


I got c-diff when I had the j pouch surgery and I have never been so sick in my life.. I was on two types of antibiotics for close to two years.

About living on the toilet lol...I discovered that Metamucil powder mixed with psyllium worked wonders.  I fill my own capsules ( my husband found a capsule device on Amazon and it makes 100 capsules at a time)  i take 10 in the morning...a few less at noon then 10 after supper and if I eat later in the evening I'll take 3 or 4 more before bedtime.  Take them one at a time with a good swallow of water after each. It means the difference of not being able to leave the house and being able to get around....hope this helps..

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