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Am I accepting of my life as an Ostomate?

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Posted 4/3/2012 12:32 PM (GMT 0)
I have to wonder some days, one minute I feel so blessed to have my stoma as it did save my life and then on other  days I am so sad that the possibility of a JPouch will never be possible for me. There are days where I would give anything to be able to walk around without having a bag attached to my stomache and the hassle of drying my bag after showers and swimming is a pain. Was so much easier to jump out and wipe yourself dry without any extra time consuming pieces to deal with. It did jump in the shower the other night for the first time in ages without my pouch and was so happy my stoma didn't misbehave, I had no poop running down my leg and the free feeling was just fantastic. So I guess I'm just having a bit of down time with it again and just wish sometimes that things could be different. I know all the positives to having it and they far outweigh the negatives but I never had time to get my head around it as it was done as emergency surgery and I know things could have been far worse. So tell me why do I still feel so down? I have had my ileostomy now for 3 years and had proctocolectomy 3 months after to make it permanent. I do go to see a psychologist and am on anti depressants and just when I think I am finally in a happy place with it all I start to wish I didn't have to have it in the first place. Sorry but just needed to chat to people that understand , thanks for taking the time to read

Doreen
Posted 4/3/2012 1:04 PM (GMT 0)
Doreen- I am sure that just about all of us have felt that way at some point. Just about every day I think about the same things you do. I can't just jump in the shower really quick, jump out and go out. I worry about summer coming, wearing T-shirts and having a bulge and scrambling to find a place to empty. When it gets quiet in a room I just hope that my stoma doesn't start passing gas. It's done that quite a few times.
There are so many things to worry about but every time I worry I think about how I could be dealing with a crohns flare and being on tons of medication including the prednisone. I could be rolling around in pain, having to watch everything I eat or sitting on the toilet.
It's definately hard, but its something that you have to accept. We are here to listen and here to offer support.
What has the psychologist said? Have they offered any good advice on how to deal with it?
Posted 4/3/2012 4:05 PM (GMT 0)
I get a little down sometimes too, mainly the shower thing, that seems to be a problem. Sure seals help a lot! Then all you have to dry is the bag, and I started putting a handtowel around it and then putting my clothes on. Dries itself and doesn't get me wet.
Whenever I get down I look at the crayon on my shower walls that my son drew when he had to play in the bathroom for hours when I had UC and I think yeah this might be annoying, but its so worth it!
The best thing I can tell is when you get down compare the annoyances to the pros. I bet pros are way higher! And try to find something everyday that you are happy your bag let's you do. Yesterday mine was having a milkshake while walking around walmart! Unthinkable with UC, those little things are what get me through.
Hope you feel better!
Posted 4/3/2012 4:59 PM (GMT 0)
Doreen, I think one thing that might help is just accepting that you're not always going to feel great about it. As you said, the positives outweigh the negatives, and you understand that. Being accepting doesn't mean that you are accepting every minute of every day and are always happy about how things worked out... feelings are complex. I think it makes sense that when things are in less of a crisis, you have more time for some of the negative feelings.

But try to just have them -- feel sad, angry, disappointed whatever, and don't add layers and layers of "why am I feeling this?", "I shouldn't be feeling this," etc on top of it..... easier said than done, I know, but for me, quickest way out is right through..... analyzing and judging my feelings just makes things worse.
Posted 4/3/2012 5:41 PM (GMT 0)
     I agree with all the above posts.  I was a lot older than most of you when I had my operation, 63.  If I were a young woman, I believe it would bother me more having this bag.   I don't lie out on the beach anymore, basically because my husband has had many skin cancers removed and was told to stay out of the sun.  We used to be regular "beachaholics".  Last summer, I did go to the beach a few times and wore a one piece swimsuit.  No one could tell I had a bag.  The beach we went to had a restroom nearby on the boardwalk where I could empty the bag as often as needed.

     I must say, I have never been depressed post op.   Before my operation, I was depressed a LOT.  I missed my grandson's 1st Holy Communion, a niece's bridal shower brunch and the funerals of two good friends.  We have a travel trailer and belong to a camping club.  When all our friends were going out to breakfast, I could never go.  We had a portapot inside our trailer because if hubby were in the one bathroom, forget it, I just wouldn't be able to hold it in long enough to get to the campground's restroom.  I was sick more often than not.  While we were away, I had to make regular visits to the lab for blood tests because my liver and pancreatic enzyme levels were off the wall from the 6MP.

     Sure, having a "bag" may have its down side, but think how sick you were prior to the operation.  Personally, I know if the disease didn't kill me, the meds sure would have by this time. 

     I wish you all the best and keep that chin up.

Posted 4/3/2012 8:04 PM (GMT 0)
Doreen,

Perfectly understandable. I was the same way but grateful the bag saved my life.. Just recently 4 years out from all my surgery and the needed ileo to save my life, I am developing symptoms of severe Gastroparesis. Stomach paralysis. Have all the symptoms and even have to lie on my right side to have anything come out of my stoma (lying on the right helps the stomach empty.) So one way to look at your ileo is that if it is working and what you eat goes through you and waste passes and you have no other issues, then that is a blessing.

Am not in anyway invalidating your feelings, but as long as it works.......that is a good thing. Sincerely, Rosemary
Posted 4/3/2012 11:27 PM (GMT 0)
Christine
You are so right. I also had my perm ileo at 63, 4 1/2 years ago. It would be nice not to wear a bag, but it is no big deal. However, if I was young and could not easily go to the beach or all the things we did, it would have been a big deal.
And chasing young ladies with the bag in the back of my mind, well.......

No, my bag is not on the back of my head!

Dan
Posted 4/4/2012 1:19 AM (GMT 0)
I know what you mean. I had the disease for 14 years, but now all I seem to remember are the good, healthy times when I wasn't sick. Actually, those healthy times occurred more often than the sick, but when I was sick, I got really sick. It is funny how sometimes it is easy to remember the good and forget the bad. It is probably why I have three kids - I had forgotten how painful it is to have them each time ;)!

Now I do struggle more than in the beginning. First of all, I am battling a skin condition since surgery, so that has made things worse. Second, I am also struggling with some sort of allergic reaction, either involved with my appliance or something I am eating. I haven't figured out the culprit yet.

I am trying to take it one day at a time. Also, when I get down I remind myself how I dodged cancer by getting this ileostomy. The ileo saved my life and I didn't even realize that until a month after surgery.

Thankfully I am not regretting the choice not to have a j-pouch. I just sometimes wish none of this happened at all.
Posted 4/4/2012 3:25 AM (GMT 0)
Thanks for your replies everyone. I do however feel really grateful that my ileostomy saved my life and I do know there are people worse off than me, I was hopeful to be off all meds after surgery but then developed Rhuematoid Arthritis and Iritis issues, so I am still on humira and methotrexate injections, so yes I do still have lots of other problems on top of it, but with the crohns I was housebound and every single day I lost control of my bowel so having the bag is heaps better, so I don't get why I still have these feelings. When I read posts about some that are having J-Pouch surgery or have already had it done and lead normal lives without the bag, I am really happy for them but the other part of me is sad that I'm never going to be able to be bag free. I guess I do over analyse things a bit too much and should just learn to be happy for having my life to some kind of normality. Guess I need a good swift kick up the backside to remind me yeah . It doesn't help that my marriage broke down 8 years ago and part of that reason was lack of support during my illness from my husband then before my ileostomy I was in a relationship for 3 years with a man that I knew was wrong for me from the start but held on to him cause I didn't think I deserved anyone better, needless to say we parted after my ileostomy and now I have lost all confidence in myself for dating and really would love the companionship of a nice man, but as far as intimacy goes I am really afraid of that now, so I don't date either and becoming so lonely. I do work casually as I'm on disability so I don't really go anywhere to meet someone. Anyway I will get there I'm sure, sorry to dump it all on you guys, but thanks so much for the kind words and the wonderful support you are all so willing to give. You are a great bunch of people and wouldn't know what to do without you all

Doreen

Posted 4/4/2012 3:38 AM (GMT 0)
You aren't dumping anything on us! We all come here and complain and we all listen, its what's great about here, we all feel comfortable enough with each other to talk about our problems!
as for your man troubles, I always had trouble dating the wrong man, because like you I didn't think I deserved a good man. I finally got one, just out of dumb luck,lol. But honestly there are still times when. He's being really sweet and. Supportive that I think I don't deserve him, but then he does something dumb! :)
But seriously, that's like a huge selfesteem thing and its so hard to get over those, I don't know iif we really ever do completly. But once you become comfortable with yourself and realize you are a good catch and deserve a good man, you will find one! Just give yourself some time!
Posted 4/6/2012 1:48 PM (GMT 0)
Hi Summer
Thanks for your very kind words, your right that we probably never really get past that self esteem issue and you never know what may be around the corner for me I guess. I live in hope that there are still some good guys left out there :-). After all they can't all be taken surely lol. I will get past this as I always do, I just have my down days as I'm sure you all do, after all we have been through a lot and for some of us it seems like it never ends. I do try to focus on all of the positives that have come from all this illness in my life and you all are definately a big positive. Thanks again you are a beautiful bunch of people
Doreen
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