Need to vent and rant. My husband had total abdominal colectomy almost 4 weeks ago. Since being home, he refuses to be involved in emptying bag or changing wafer. Says it grosses him out. He has a high ileo, and the output is huge. He's on 10 imodium every day, which hasn't really made any difference. I'm emptying the pouch at least 10 times every 24 hours, and last night was up 3 times. I'm beginning to feel like I'm the one who had UC and surgery. I'm trying to remain compassionate, but I really lost it yesterday when he let the bag get too full, and when I was emptying it, the bag came off and the contents went all over everything. My grown sons are upset with me because I don't force him to take responsibility for his own care - believe me, I've tried. I've begged, pleaded, cried and threatened, to no avail. I'm at my wits end, and exhausted. Help please!

Hi and welcome to the site.

I really can't comprehend why anyone would want someone else to deal with their ostomy. I have a perminent end ileostomy but have also had a loop ileo like your husband. Did he get you to wipe his bum when he still had his colon? Did he have you wash his privates when he took a shower or had a bath? Well it's the same thing in my mind!

I know at first it's really daunting to have to face what you've been through and to learn a new way of dealing with your toilet issues but you cannot go through the rest of your life expecting others to baby you expecially if there is no good reason (such as being physically unable) to tend to your own business.

I'm sorry if I sound harsh but if there really is no physical reason why your husband can't take care of his own ostomy then perhaps the only thing you can do is to go on strike! Refuse to do it for him. and let him clear up his own mess if he leaves it too late. He is not a baby and you are not his mother.

I would go out for the day and leave him to it if you can't stand his pleading. Go and pamper yourself. Spend a day shopping, getting your hair and nails done or just visit a girlfriend or one of your sons. If you aren't there to do it for him he will have to fend for himself. This will also give you some much needed respite.

Perhaps it would be a good idea to print this off and show it to him. It might be that he just needs to see the response from aonther ileostomist to get him to realise how unfair this is on you.

You need to take care of yourself too because believe me, in a lot of ways this is much harder mentally on the carer than the patient.

Come here to vent as much as you need to. We are all here to help and lend an ear or a shoulder.

Hugs to you.

Shell

Hi Fluffy, Hope things improve with your husband and he really should be at least trying to handle this himself or at least with some help from you. I hope he had a ET nurse visit him at home to teach him how to do these things. Maybe you should speak to his Dr. and maybe get someone to come in and help and then let him take over from there. Tough love is what it is, TOUGH, but he needs to learn and move on.
I'm from NY also and had my colectomy and JPouch done in 2006 in Florida. I had my TD on 11/26/2006 and its been a long ride since. The loop ileo I went home with was very depressing for me also but I was lucky to have a wife that was a nurse and put me in my place. When I got use to the ostomy I was so happy I didn't want to go for the TD in november. Even now I'm still having problems and might need a end ileostomy it doesen't scare me as much as it use to scare me because I know I can live with it. Tell him if he wants to speak with another man and fellow New Yorker just send me an email, I hope I can help and wish you and him all the luck in the world.
CraigCHeid@cfl.rr.com

Hi Fluffy,

What an interesting and difficult situation you are in as a family. First, your husband has been through a trauma and we all understand that, but he really does need to care for his own ostomy. With Mark we had done so much research prior to his surgery that we knew accepting the bag was crucial for his good recovery. It was important to him that he get in there and deal with his bag, it was a way to cope. He was also willing to accept the bag b/c it meant he was on the road to being healthy.

My advice to you is to get you and your husband into some counseling -- Although he may not be game for that, he needs to get in and start COPING with the reality of your new life situation as a family. It is really hardcore that he isn't accepting his ostomy, and in a way sounds like he is punishing you for his health problems. This is a difficult road for you both to travel since this is meant to be an exciting time of healing not a time of frustration, fear and denial. He also needs to learn that this is your disease as much as it is his/was his, and that he doesn't need to make it harder on you by his behavior.

Show him Mark's picture below, and show him that life goes on, people adapt, and that although an ostomy isn't ideal it is an EXCELLENT option for being healthy.

Megan

Fluffy
I hope the opreation went well and your husband is feeling better and stronger. It is a hard adjustment to have the bag. I cried every day I had it for the first month. It has been long enough for your husband to feel sorry for himself.

You should do as Shell says, take some time for yourself. Your husband must know how to change the bag by now. I would not just desert him, but show him how it is done and where everything is to change the bag. And then, desert him. Sounds like you have been more like a nurse than a wife.

He must need an anti-depressant. I started taking Elavil when I was first diagnoised with UC. It has helped me with sleep, also.

Show your husband this site, so he can see he is not alone. I wish I had this site when I had my surgery, but it was back in 1994. Can't believe how dependant we became on computers, so fast!

I see you are from NY. Where did you, well your husband, have the surgery done?

Hi Fluffy!

First of all, I LOVE the name!....sorry to hear you're having such a rough go of it with your hubby. I can imagine how you're feeling right now, and all I can say is, you're amazing! He's so very lucky to have a caring devoted wife like you, but I have to agree with my fellow pouchers...TOUGH LOVE is your only choice at this point. If you keep doing everything for him he'll NEVER do it for himself. I know it's going to be very difficult for you, but he has to be made to understand the stress he's putting you through.

Yes, he's been through a very tramatic experience, and depression is probably a big part of it..prehaps you should consider anti-depressants, if not councilling for both of you. If he refuses, then go alone, it may help you cope with this seemlingly impossible situation. I remember when I had my bag, I was almost of the verge of suicide, and wanted NOTHING to do with it, until I had a nurse who forced me to change it myself. I remember heaving and wretching every time I had to do it for the first week, but after that I got use to it. I think it's mostly psyhological, but once he takes that first step and does it himself, he'll realize it's not as big of a deal as he thought it was. Trust us, we've all been through it, it's not a fun thing to have to do, but we do it, and get on with our lives.

He may say terrible things to you, tell you you don't care about him anymore, but that's just his anger and frustration talking. I remember acting like a mad man when I was forced to change my bag, I hated everything and everyone around me. But now, as I look back those many years ago, I feel soooooo embarassed I acting in such a horrific manner, and in time, your husband will feel the same way.

I don't envy you in your task ahead, but we're all here for you, and remember, it will get better, it's up to you to force him to start taking care of himself, and most importantly, start taking care of yourself!!! Let us know what's happening, and come here any time you need to vent,

All my best,
Eric

Wow, I can't imagine asking someone else to empty it for me. When I had the ostomy, I did have my wife help me with the changing. Her help made it much quicker and easier, but as I got closer to the end I started getting to where I could stand in front of a mirror and do it myself, which she greatly appreciated. Now, in defense of your husband. I was very depressed while I had the ostomy and when I had the loop I was run down, depressed, and in constant pain. It was really tough for me to deal with, so I spent probably 90% of my time isolating myself, playing online games, or reading message boards. It's just how I dealt with it. I figured on the game no one will know that I just had a leak and had to change shirts.

I will say this though. Don't give up. Since you're on a J-Pouch board I will assume that the situation is planned to be temporary. With the end-ileo I felt vulnerable and had some confidence issues, it was doable at least, but the 6 weeks I had the loop were the worst 6 weeks of my life. Constant leaking, burned up skin, extreme weight loss were all problems, however the last 4 weeks of my life, since takedown, have been like a miracle. The 6 weeks of hell were so worth it. It's like I was before I got sick with UC, well plus a lifting restriction and a few more toilet trips, but my strength is coming back, as is my self confidence. With the UC I had pretty much given up on life, but now I feel like I have a real chance to accomplish something again. Coming here and reading about other people's success and failures really helped me to deal with the situation.

Yep - time for him to 'do his own thing.' No one - not one person other than hospital staff ever changed or dealt with either of my ostomies. I totally agree with Shell - it would be like asking someone to wipe my ass 'because it grosses me out.'

You need to very calmly and softly (so he has to strain to hear you) tell him you're going to do one more ostomy change and that is the ostomy change that you're going to be showing him how to do it for himself. And then you're not going to be doing it anymore. Say it with a smile on your face, calmness in your voice, and determination. Tell him you love him and that because you love him, you're going to help him help himself.

I don't know how long he has to spend with his ostomy, but typically it can be 4-6 months between surgeries. Ask yourself if you want to do this for another 3-5 months. Ask yourself if it's going to help your relationship if you become resentful because you're doing it. Also, ask yourself what you will feel or remember 20 years down the road. Will you realize that it really WAS only a small amount of time that you helped him out? Maybe if you put it in that perspective, it will make more sense if you feel you need to continue helping him out. I know that if I asked myself that question twenty years down the line I would say that short amount of time that I was changing his appliance wasn't a big deal. However!!!! I STILL wouldn't be emptying and changing his appliance for him. Even if I realized it was a minor blip in the grander scale of things.

He needs to be cut off. I would bet that being cut off and dealing with his own ostomy would also greatly aid in his recovery. He gets to take control of that part of his life. That really is empowering.

And remember, this is only temporary so you WILL get through it. It's your duty to come here to rant whenever you need to. That's what all of these people are here for. One other thing I should point out - do you see what everyone has advised? These replies are coming from people who have actually had ileostomies (well except for Megan but she doesn't count because she's totally another breed of human - she probably DID have an ostomy.... ). So you'd think that you'd get at least ONE response telling you to continue emptying and changing. But there isn't, is there? Yes, we're sympathetic for what you're husband is experiencing, but every single one of us feels he needs to take care of his own dang self.

kathy

Welcome to the board Fluffy.

Lots of good suggestions here about how to approach the problem. I think that it's understandable he does not want to change it, but stop emptying it right away, that's too far. It takes like a few minutes to empty and clean. Did he ever change a poopy diaper when your kids were babies? It's no worse. Tough love for this one.

As far as the changing. I can understand somewhat. My first few weeks, I had to have my wife help me. My abdoman felt awkward and I was not comfortable doing it. Eventually, I started to plan better. The less output during a change, the better he'll do. So first thing in the morning change would be good, or right before bed have him down a few marshmellows and do a change a few minutes later. He HAS to learn to do it. You can't be together all of the time. If I have a emergency change when my output is high, I may still ask my wife to help because speed is a factor when you are trying to change your gear when the stoma is not behaving for you. I can change in a couple minutes now. He should lay everything out ahead of time, bag, wafer, paste or ring, removal wipe and adhesive if needed, and rags or towel.

I really wish you good luck, mentally, the ostomy can be really tough, but once he gets over the hump, it's a snap. It sounds like your sons would be behind you taking a tough stance on your husband, so I would do it.

Hi Fluffy:
I had a touch of "husbanditis" when I was discharged with my bag. At first, it was more a case that I couldn't get a good seal so I enlisted her help. She tried but wasn't able to do the job without getting sick herself. (We fondly remember how I called her "Atilla Nightingale" when she first refused!). So, for a couple of weeks, we arranged for a "home care" nurse to come in to help with changes. I must say, there is nothing like saving money that helps a man learn a new skill! So, it wasn't long before I put in that little bit of effort the change required.

I didn't want mine either hs many folks here and I dread the fact there may be a time I may have perma one . I'm very independent person and feel that would tie me down and I changed mine and I told my self when I first had UC I rather ide than have a bag but I did it .

My suggestion is to have him talk to someone perfessionally to help him through it.

I know this isnt quite the same, But I always had my mom there when I changed my bag. I could not for the life of me cut the wafer properly so she was always there to help. She even did help me empty the bag right after surgery because I couldnt bend over. But I couldnt imagine her doing that for me 8 times a day for months and months.
It might be gross to him but I can not imagine how much grosser it is for someone else to do. I agree with what everyone else has said, cut him off, if you need to stand by and watch for support thats okay but he needs to learn to do it him self

Everything Kathy Smith said!!!!!
And more, (well. I would like to but I won't say it)
But here is a quote you could read him:


"What lies behind us and what lies before us are tiny matters compared to what lies with in us." -
-- Ralph Waldo Emerson
Den

For years and years before I became sick with uc I worked with children who had severe disabilities. Several had colostomies. We had a nurse on staff who did all the medical procedures. I couldn't even bring myself to look without gagging. Lo and behold, I had to face this procedure on myself! Thanks to the wonderful ET nurse in the hospital and visiting ET nurses once I was home, I became really good at all this! I have heard of people who seem to think they can't handle it. It will be best for everyone once they learn they can overcome their fears. It will take real conviction on your part to stick to your guns about making your husband grow up. Best wishes.

Fluffy,

I can understand your frustration! Most of the folks that have already posted have given you some great feedback. And I agree that it is time for him to start taking care of himself.

But, I also wanted to give you another perspective. These surgeries can be very difficult to recover from, both physically and emotionally. My wife and I have a great marriage, but the time that I spent with my ostomy was tough on both of us. She was wonderful and I was very difficult because I was perpetually pissed off about having the ostomy - and I'm generally a very easy going kind of person. So, it was a shock for her to see me in that kind of a mood for so long. My perspective was that I didn't want anyone else to even see the ostomy - so I didn't get any help with it. The way that I was difficult was with a bad attitude and because I was feeling sorry for myself.

I can only imagine that since I had such a difficult time dealing with the surgery emotionally that a lot of others do as well. And - while it's not an excuse for continued difficulty with your husband - it would be next to impossible for you to understand the difficulty he may be having as well.

It took me about 2-3 months to start making significant improvement in my attitude after surgery. I'm not proud of how I behaved. Thankfully, my wife had plenty of pateince and forgiveness.

I do hope that your hubby can make the transition into caring for himself soon and that subsequent surgery(s) go very well. Please keep us updated!

Rick