I know this board is for J-Pouch patients, my husband has a perm ileostomy. This is the best support site I've seen so I'm hoping this is OK to post here cause I need some words of wisdom. ;-) My husband had his second surgery last September. The biopsy after his 1st surgery showed superficial cancer in his colon so his specialist and surgeon recommended complete removal of the colon. He did fine physically after the second surgery...a lot less complications than after the first.
He was pretty depressed initially, to the point where I was pretty worried about him. Things seemed to have progressed over the past few months to the point where he appeared to take things a lot more in stride than he used to before his surgeries. I am very proud of how he has handled it all.
Unfortunately, when he does get down in the dumps, he seems to get very angry and I take the brunt of it. I feel like a real JERK for saying this, but I am at a loss for what else I can do. When he gets down, he gets very short with me and when I try to get him to talk, he will tell me "there's nothing you can do". Then we end up in a huge fight and things seem to come out of the wood work. I can't seem to do or say anything right when he gets this way and then I get depressed. It all makes me feel like I am failing him somehow, that maybe I am being selfish having my hobbies that I do during the week. He even has told me that sometimes he wishes he "wasn't here" anymore.
What can I do...I'm crying as I sit here and right this. Can anyone shed some light...should I just leave him to himself when he gets like this? Pulling it out of him doesn't seem to work, we fight and then I end up feeling guilty.

This message has been edited. Last edited by: km,

I went through that anger thing. And took it out on DAMN BRIAN. I had been in an automobile accident and I now think that was the straw that broke the camel's back. I came down with a raging case of Post Traumatic Stress Disorder (PTSD). I was pretty sure that's what was going on but I wouldn't tell anyone.... just because - THEY'D better figure it out. Damn them. See the anger? So I went to my GP (I didn't tell her what I thought was going on because that was HER job. Damn it!). She said PTSD and prescribed Zoloft. Antidepressants are supposed to take a while to kick in. But I swear to you, in two days I was back to normal. I felt like me again.

If you can get your husband to a doctor to see if maybe he needs a little help along those lines, please do. Also be aware that there is not a 'one size fits all' with antidepressants. He may have to try different ones and different dosages to find one that works for him. I had my surgeries 18 years ago and I think that things just piled up until the last little piece of the stuff piled on. There isn't a set amount of time in which PTSD will show up. (If that's what he's experiencing of course.) But his symptoms sound so much like mine that it seems like it should be explored.

You could also try to find a good therapist for the both of you, who is familiar with chronic disease to go to. This crappy disease takes its toll on everyone - the patient AND the patient's family. I also think it's great that you're doing things for you. It's probably helping to keep you as grounded as you can be.

Please don't feel guilty. I know that my saying that will take all of your guilt away, right? But at least tell yourself that you're doing the very best you can. Unless, of course, you think you should feel guilty because you aren't being a doormat.

kathy

Kathy -

Thanks so much for the reply...it's good to hear from someone who has been in my husband's place. It sounds awful, but because he (seems) to handle it all so well for the most part...that he's "alright" now and feeling "normal". Then he gets down like this, and all I can think is "Oh no, here we go again. Is it always going to be like this?" When he was sick with the UC prior to his surgeries, he would sometimes get down about it. For some reason, we both were able to handle that better. Now I keep thinking he should be all better...no more UC, right? Wrong! It seems to have created a whole new set of issues. I know he feels different. I know he's afraid of odors, noises, etc. He tells me he feels like he can do less now than before, but there are some things he won't even try to do (like play golf again, with his doctor's OK). He just tells me "I don't even know if I can".

I have thought about the antidepressant thing...but that will most likely start another argument. To be honest, I take an antidepressant myself, have for years. It has helped me, I know that. I also know that my own issues make it harder for me to deal with him being down...also the "fixer" in me makes it difficult for me to just let him sit there and mope. Man, what a mess!

Thanks so much for your thoughts, I do appreciate them.

This message has been edited. Last edited by: km,

Hi KM,

First, Welcome to the site! You will find that this site welcomes anyone dealing with jpouch related stuff. I'm a wife of a jpoucher and I am active in both jpouch.org and keeping up with Marks disease/surgery related blog.

Listen, this is such a difficult situation you are in. I was in a similar but different case of Mark's early anger, depression, etc..There were so many stages we had to go through all of which included therapy for us, therapy for him, for me, and ultimately just us getting to a point where the disease became "ours" and when that floodgate opened, it was like we entered a whole new realm of coping together as a team.

Your husband needs to find the strenght to become proactive within the negativity of his situation. I think from our experience helping others through contributing our experiences was really the main thing that helped all of us cope with the situation.

Most importantly, you MUST take care of you, you are no good if you get sick "emotionally," and dealing with the persistent stress of this situation you are only human and bound to feel the effects. You must keep your activities, and your husband must learn that those are crucial to keeping both you and him healthy.

If you need anything feel free to PM. And also, you might want to visit our blog below - it may give you some ideas on how we define support in our family.

Hi KM,

I have had an ileostomy for 16 years, from the age of 14.

I don't have answers but I do know that what you are experiencing is part of the recovery process from the shock and stresses of illness, which you have both been victims of. I see it as mental drag. The body heals but the mind takes a little longer. I wish i'd had some councelling after my surgery, let alone some advice for my parents to cope with a teenager with a stoma after 4 years of illness and heartache. It didn't happen. I was kicked out of home at 17 (yes homeless with a stoma) and they divorced eachother two years later.

If you can talk (and cry) it through rationally and irrationally with a neutral party I am sure it would help you both recover sooner.

I have never allowed the ileostomy to define me or dictate my life. I swim, do kung-fu, scuba dive, have 2 children and am married. None of my friends know I have an ileostomy.

I realised at some point that illness was not a negative thing and that it was just something that happend. I didn't like it but I accepted it. I think acceptance a to key to moving forward.

There is one quote that invigorates me whenever I feel I am getting the blues and I share it with you and your husband now in case it might have some effect on you now:

The mind is its own place and in itself, can make a Heaven of Hell, a Hell of Heaven.
John Milton.

You'd paid your price, now you both deserve some joy and happiness. Take a small holiday, get some sunshine and be near the sea. The tide is turning for you.

Dan

I chose a perm ileo after 3 1/2 years of chronic pouchitis with my j-pouch; I was 30 years old at the time. Since then, I've hiked 7 miles to Ramona Falls at Mt Hood, kayaked 5 hours through Central Florida, traveled extensively, had a baby (Alex who is 2 1/2) and am about to give birth to a daughter on July 16th. My ostomy stops me from nothing. It can take time to get over the understandable issues, but once you do, life can be great.

I think what helps is to think about who is really looking at you or paying enough attention to you to notice the ostomy or the odor or the noise or whatever? I mean really, I don't scrutinize strangers closely enough to identify any of these issues, so why should I think someone else is paying that much attention to me? And, if anyone ever did, I'm more than happy to tell them what I've survived to get to this place and how grateful I am that my ostomy allows me to live my life.

All my friends and family know all the gory details, so it isn't an issue for them. It may just take time for your husband. He's also dealing with the issue of having had cancer and that can be a very hard thing to reconcile. I highly recommend that he get a therapist to whom he can vent all his feelings, even the ones he may be embarassed or afraid to share with you.

I'm not sure where you are in NH, but I'd be happy to meet your husband (and/or you) at some point if that would be helpful. Maybe if he sees someone else in his situation who has survived and thrived it will help him see that as an option for him. Feel free to PM me if you want.

Kim, this must be very hard for both of you. Can I ask why he is not suitable for a J Pouch.

Hi Kim!
Been there felt that (and I hate to tell you, some day, still happens but FAR less frequently!)
I've learned in most people's mind, there's no way to win an argument against someone who's been thru this so don't expect to be able to dump this on your friends because they will all say "but he's been thru so much" (which he HAS).
Dennis chose (which was the right choice and probaby saved us another year + and 2 or 3 more surgeries of attempting a pouch redo) a perm ileo. When I step outside my own head and think about it, I get what they think....... what can be worse than all of this?
WELL, LIVING WITH SOMEONE who is trying to deal with it all and come to grips with their new life and all they might have lost (physically and mentally). Not all do........ but some really do.
I love Kathy's "damn Brian" thing. I know I'm damn Joan still some days (we're just ending a "flare up thing but I have to say, first in quite a while). That neutral 3rd party thing, GO FOR IT even if alone. We have a psychologist "on call". We don't need her very much at all now (close to 3 years POST first surgery of 8 - 5 major 3 minor) but she is there LONG term history in mind if we do. I deal with PTSD still today. And Dennis is just beginning to realize some of his. He's getting weird dreams and finally talking.
I understand the crying thing. Luckily, I don't do it so much so I can tell you it WILL get better. If before all of this happened, you felt secure in your husband's love, all is still well (and maybe even if not). But for your own well being, don't discount anything you are feeling. It's as real of an emotional pain as his is. Went for a walk with my boys and our dog tonight and was trying to explain "unconditional love" for a spouse to my 17 year old son. (Keep in mind that a couple of years before this surgery, we went to marriage counseling because my husband decided this dog was a problem which she wasn't and I was ready to divorce over the damn dog only because I KNEW it wasn't the real problem.) The kids remember our one time of marriage counseling and only time divorce was mentioned and 5+ years later still something they don't want to think about. Anyway, I told him to think about this when he got seriously involved with someone. Can you listen to all they have to rant at you even when you BOTH know you aren't the cause and keep your mouth shut? Do you have enough confidence in this person to remember the situation you are dealing with now ISN'T the same person you've always known but know somewhere they are still there? I won't tell you it doesn't hurt being ranted out and cut out and picking up all the pieces. But at this point in time, I can tell you it does get better. I wasn't sure I'd ever think that. My husband is still severely and permanetly disabled (not normal- people please don't freak) but he will now go out in the hot of summer with me with a T-shirt on and his picc line showing..... (yeah- some of you think big deal but this whole thing has given blows to a man's emotion I'd have NEVER thought possible.) He even drove himself .75 miles to a haircut I scheduled with the person at the salon the boys and I go to but he'd never gone to before. He didn't ask me to go - as I usually just do - so I didn't offer and he made it!!!! Your husband will finally get to realize it's not all over even though things might have changed.
Jill is a SUPER testament to what a perm ileo life can be and is a big inspiration since she too made her choice because she knew no matter what drs. said, the pouch wasn't working for her. My son's were at first upset when their dad first decided that he had to go ileo. While they were on vacation with my parents, they met one of their neighbors at their vacation house outside of Aspen way up in the mountians and in a very rugged area. This man has had an ileo most of his life. He has a wife and a couple of young kids. They all went out to dinner and talk turned (because my parents told the man they wanted my sons to realize how not weird this was) to his ileo and the fact that some mornings as the family joked and wrestled in bed first thing in the am, his bag might burst if he didn't get moving fast enough. The fact that these kids thought it was funny helped my kids realize it's just a little bir further than a "fart" joke.
I want you to cry the tears you need because I think they are healing. (Either that or I have no more to cry.......) But, the fact that you come to something like this makes me pretty condfident that you are going to make it thru all of this.
If you need to, private message me. This really is a time thing. Time and thick skin. He loves you. He just can't even express his emotions yet. Keep loving him. He'll eventually quit thinking of you as "damn Kim"! My husband at this point mostly thanks me for keeping him alive (although- I'm still damn Joan once in a while!)
TIME TIME TIME. And take some for you too.

KM, I am not the model ileostomy citizen so to speak, meaning, I still havent oped with my ileostomy properly. I am a guy, dont have the j. I am younger than your hubby. I didnt do the J because of certain complications I didnt want, I had enough complications with the ileo, so that freaked me for having my second. I will tell you, I was in the dumps. I was a model, athlete, weight lifter, and a freshman in college. Then everythig happened. After that, I was in the dumps. My Mother nervous about me, i thoguht i was on the verge. I sat there lifeless. Then when going out to eat, see people drinking and eating whatever they want without regard, eating MSG wings, loaded caffeine sugar, you name it. However, far as depresson, I got involved in a relatioship, now she didnt really help me,, but just being in a relationship did. So, I first want you to understand that you being there should be helping him a little. Second, he has to snap out of this. I can tell you what I did. I was debating about what surgery to have, when to have it, did I need it( it was optional ), was I going to have the same complications....ect,ect. One night I was told this," Let it go"..not by my friends, not ny my mother, but buy her boyfriend. " Does your husband have anybody that he respects, a beer bud, or of that sort. Sometimes hearing it from someone else can help. Even though the words are the same, they are just in a different voie. Remember when you were a kid, and your mother would just keep on repeating the same things, dont cross the street ect,..Well, what if a persn you highly respected, like a super model said, dont cross the street. As a kid, you may not cross the street. So, sometimes getting help from a friend or close relative can help.
Anyway, look for alot of guys, scratch that, I cant speak for the general population, for me, it was hard. I lost a LOT of confidence, via former model ect. I still have issues, not so much depression, but anxiety and others. I am sure your hubby can rebound. He has things going for him, a wife, maybe a carreer,ect. I have to go out with my baggy and date to find a person to love and marry, your husband has it right there, I am not making light of this. It's a bad ordeal. What got me over the hump I will admit, was those words of my mother's b/f, but I said screw it, went out bought new clothes, went out drinking for two weeks, people were then nervous about me, but in another way then. I also mixed my drinking wwith anabolic steroids( first time I ever taken them ). I took them cause I wanted back what was taken from me, then realized.......I dont want to harm myself, I was already harmed. However, If I can go out and do this, go out drinking, I can do other things, like going out with friends, double dating,ect. Get my drift.
Far as pulling it out of him, I cannot tell you, every man deals with a beast differently. However, theres encouragement, and maybe when he is comfortable, do stuff, go out.

I also just want to add, i am just giving you my experience as a male, who has the ileo, who did go through months of depression. It took alot of confidence away from me, in fact, I have anxiety over certain things. I do take anxiety medication, not for the purposes I just mentioned, not for depression over surgery, but other things. All this was just from some of my personal experience. Again though, I repeat, this is just my own experience, I am not saying, me being male or having anything of the same, makes it the same as your hubby's situtation.

This message has been edited. Last edited by: Crazy1,