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having trouble coping with the illeostomy

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Posted 12/30/2004 6:52 PM (GMT 0)
Hi everyone,

     I recently had uc. I was on high does of pregnizone and asacol and that didn't help. I found myself on IV steriods a couple of times in a about a 5 week period. The IV Steriods did help, but when it was time to go back on the oral steriods they did not work. So one nite I got so sick, then the next day I was rushed to a hospital and it was there where I had the surgery for the illeostomy. I only had UC for 3 months, I was so sick that I lost 35 lbs. in about 2 months. They say I will have the pouch for 6 months, then get the jay pouch( as I still have my rectum, In fact sometimes I still go out of there ), then they will reconnect everything. I didn't think though that in getting the illeostomy would be so difficult on me mentally. I use to be into weightlifting alot and the weight and muscle loss endured has took a mental wear on me.Also, the bag is really doing it for me too.I am depressed during the day. I am 20 years old and am in college, although I will be taking a semester off.This is my only second day back from the hospital. I was wondering how you other guys/gals have delt with this transformation.Everything just happened so fast.I was in great shape and doing well in school.Now muscle is still there, but deminished....and I have to take some time off in school when I was doing well.Also, I had a couple girls who wanted to date, now I won't even talk to them since the surgery.Although my body is feeling a litttle better as to having UC and being in the hospital, but mentally I am in the dumps.Also, I was wondering if anyone made there weight gains back and or muscle after having the illeostomy? I know things could have been worse, but that still deeply doesn't convey my thoughts.I was wondering if anyone has gone through this and how they coped. I can't wait till the reversal.....but it is 6 long months down the road.I can't tell you how this has changed me mentally. I was so laid back and easy going, and kept faith.....now I am different. I am like the grinch on x-mas... I really just feel so uncomfortable and feel this is about the only place where I will tell my true thoughts.Sometimes when I go to sleep, I just wana wake up without this illeostomy. Well, I do feel bad fo anyone going through colon problems.I hope that you all find sanctity and have a good time dealing with things.Well if you have Uc or have gone through any surgery please post. As I am sure it will be hepl not only to me but others as well. Thanks for reading.

Rick

Posted 12/30/2004 9:43 PM (GMT 0)

same thing happened to me...

i was enjoying life, at 23, going to the gym etc etc and then after a bout of food poisoning, my life was turned upside down. i lost nearly 3 stones in a year, couldnt go out, split up with the other half, moved back home and never went out.

my doc said not to give up hope and there were more pills to try, so off i went 'again' to the chemist for another bag of pills, jeans too big for me, and what were once tight fit, good looking t-shirts, now just hanging off me.

then 1 nite, i had very bad stomach pains, and i knew something was wrong...went to my GP and was taken to hospital, had scans and x-rays and finally at 10pm surgeons came rushing onto my ward to say that my bowel had split/perforated and i was in trouble!!!!?!?!?

to cut a long story short, i had an op and woke up with a stoma bag, but too be honest i knew that was coming as no medication worked for me.

i am now a completely different person, take no medication wotsoeva and go out as i should. i cover the bag up when i go out and just say its to protect my scar and i feel normal.

but i know what you mean, when you say it gets to you mentally, but just think how quick the next 6mths will go?! i had my op in sept and its basically jan now, so thats4 mths gone already, so im nearly there.

hang in there, any q's just email me...

Posted 12/30/2004 11:02 PM (GMT 0)
Well thanks for the reply.Yeah Hopefully I will feel better with time, hopefully after a month or so.It is hard how everything just hits.Well I am glad that you only have two months left.I will drop an email.
Posted 1/13/2005 9:49 PM (GMT 0)
29 with an ostomy for 5 years because of UC and CD.......It gets better!!!! The colostomy helped me greatly and I had a very hard time with the vanity part for a long time, but I realize now that I am still beautiful and I still have life and I am able to live it now....Good luck and if you have anyquestions you can email me. My prayers are with you!!!!
Posted 1/18/2005 9:18 PM (GMT 0)

I just wanted to let you know I feel your pain! I was a restaurant mgr for 10 yrs before I started to realize I was sick.I am always in denial when I am sick, so it took a while.Anyway, I had uc for @ 8 yrs before my first bag. I had a temp colostomy put in for 3 months, and I thought my life was over. I was and am still married, I could'nt imagine being single. Anyway, I had a reversal, and all was well for @ 6 months, then I started to lose weight again and all the other stuff that landed me in the hospital, being told I had to get a permanent illeostomy. Yes I had emergency surgery to remove my whole large intestine and all connected to it. So needless to say I know the feeling of having a bag....I know there are so many positive sides to all of this, but I don't think we are the ones to really feel that yet. I am glad and all, but it sucks too. One thing that helps me more that anything, is these sites available for us to vent, to talk and to just listen to people just like us!!!!

I thank you for posting this and listening to me, if there are any questions or ant thing I can help with just let me know!

huggggggggggggggggssssssssssssss............

                              michelle

Posted 1/19/2005 5:52 PM (GMT 0)
I had a colostomy in 1999 and I was 24 years old. Now I am 29 and just got a handle on the fact that I will have this thing forever unless god willing there is another alternative coming. It is very hard to cope when you feel that your somewhat normal life has been taken from you and all you were left with was a bag. Well, I am here to tell you that life can be normal with the bag and that people still will find you attractive. You will gain your weight back and muscle in due time. I have and it was nearly impossible for me to gain wieght ever!!!! Surround yourself with good people! I find that I tell people right away when I meet them that I have this colostomy and explain things to them. I show them if they are interested and most of the time the feed back I get from them isn't what I expected. They usually are very supportive and caring and they still look at me the same. You are human and this bag saved your life. Please be thankful for that. You make a difference being here in this life regardless of the hassles that you have to face. I was told once that I would beable to be reconnected and I held on to that only to find that they did not leave enough intestine to reconnect and I thought that I would have rather died. Now I know that I have an advantage over everyone. I can take a poop in the woods standing up and be done in two seconds and noone ever has to know. I also have found that even though it makes noise at times and can be embarrassing that the ones that don't say anything about it or just try to make me feel comfortable are the ones that are worth wasting your time on. It is a good indicator on who is worth it and who is not. I am told that I am very good looking and that the colostomy doesn't affect that. I believe them now and I think you should too. It will all be okay, TRUST ME!!!! Don't let the depression get the best of you for it will make matters worse for you and your disease!!!! I gurantee that you aren't any different than you were just an added conversation piece. Please keep your head up, things will get better. If you would like to talk please email me at [email protected]. I have been where you are and would love to exchange stories and humor about the hardships that life has doled out to us. Come to accept that you have it and that it will not change you, and in no time you should be able to resume your activities. I wish you luck and all the strength in the world.....Till we speak again.....Take care of yourself.....Marleygirl
Posted 1/24/2005 6:47 PM (GMT 0)
Rick,
Six months goes by fast if only you can do something. I have UC and because I cancelled my first surgery appt, my surgeon is mad and may not give me another chance. I have had it for 11 years now and at 53 years old, I wonder how long this poor colon will last. Surgery is the cure! I am a person who finds that when you don't know what to do, because you are overwhelmed or whatever, do what you do know how to do. Even if it is a little thing like thinking about some plelasant thing. As for me, I go around my house and try to do some small home improvement each day, no matter how bad I feel. I enjoy that. If it wasn't so freezing cold I would be outside in the yard. Also I journal each day and get those negative fearful thoughts out of my head and down on paper. Don't be so hard on yourself. It is a very big change, and yet you are still you. I had people telling me that I couldn't handle having the bag, and all those type of things, but I look at as a lifesaving thing. I know you will do fine, just give it some time and try to think on things outside of this problem. Our thoughts can get control of us and we have to show them who's the boss.
Hopeso
Posted 1/29/2005 5:24 PM (GMT 0)
it took me 6 months to get over jsut being able to deal with having a stoma:( had chrons since 81..........81 82 bad years........but i learned to live with the dread disease in fact until 2 yrs ago april had forgotten about diagnois...........then i thought i had the flu.....was blocked bowl.........fought a good long fight with remicade 17 hospitalizations for dehydration and so blocked morphined for weeks at a time then woke up with an ileostomy..........i was horrified! but.........pain was gone..........i will have reconnection surgery wed.50 percent chance i'll live through surgery........50percent chance it will work.......50 percent chance if i don't try dehydration will eventually get me so..........i'm 50 percent sure it will work out! What i do know is you are young:) And theres lots of women out there that really don't care about an odd looking bag........women unlike most men care about witty caring kind a little macnho:) good looking helps but i think about short guys.........i'm 5 ft 7.....when younger had crushes on a few guys my height......but low and behold they were intimidated by me:( i know alot of short guys who carry themselves like they are 6 ft tall and others that seem like elves.......Be confident in your self you don't have to be single or settle for anything less than the best young lady soul mate out there.........Its going to get better!
Posted 2/25/2005 10:33 PM (GMT 0)

Your story reminded me alot about my own...

     I know what you are going through, literally. The same thing pretty much happened to me. I was always in the gym working out and since the surgery I've lost about thirty pounds all together and now I've gained back about ten. I'm going through all the same emotional feelings as you are and trying to deal with getting back to normal with my wife. I'm trying real hard to keep the faith and rely on Jesus to help me deal with everything. I still have along road ahead of me, in six months I have the option to have another surgery to get re-hooked back up hopefully if everything goes well I can get back some normalcy. I know you just got out of sugery and things seem really negative right now but i've been there and can tell you I been out of surg for about six weeks and it does get better. I feel stronger and feel like I could go out and throw a football around with my boys. I feel the urge to start working out again and I am SLOWLY with 10 lb dumdbels because I still have alot of stomach pains. By the way if I didn't mention before I'm 27 yrs old and a guy. I feel like this is all a trial and it will make me into a stronger person in the long run. I have a great support group in my family and friends and couldn't get through all this without them. Hope you get better soon and hope to hear from ya.

 Stay strong,

Wes

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