How many of you have had difficulties--and I mean REAL difficulties--dealing with an ileostomy and/or a reversal of a j-pouch, even if temporary? What have you found to be the most helpful method of dealing with these problems? Thanks again. You've been an incredible source of support and strength.

You are right..it is a real emotional adjustment. I ended up calling my doctor and got on an antidepressant. That really seemed to help during my temporary ostemy. Everyone is different and handles it in different ways. Good luck and think positive!

I had the worst difficulties dealing with the ileostomy. I think I am the worst person here wen it came to it. At first in the hosptial I would not even empty it, then when I got home I would not change the appliance. I cried every day. Finally the stoma nurse told me she was not coming anymore and I had better learn. I use to make my husband stay next to me while I changed it. I would not even shower unless I had underwear on cause I could not look at the bag. This went on for 11 months-no joke. The first time I took a shower sans bag was right before my reversal. And then guess what-after takedown I felt so misreable I actually wanted my stoma back-go figure. What helped me get thru-anti depressants, a wonderful physiologist, and the fact that this was just temporary, and of course the support of this board.
Susan

What helped me was a good support team of family, friends and the goood people of this site. I also took antidepressants for PTSD.

The other thing that keeps me centred is helping others who are going through the same thing, which is why I visit here on a daily basis and why I'm on the committee of our local ostomy association. I feel I need to give something back after all the years off support, advice and friendship that this site in particular has given me.

We all have to deal with our situations the best we can and no matter how every indivual handles it, we all deserve a pat on the back for getting through this. I believe this experience has made better people of us all.

Shell

Those who can not do, teach!
Well that would explain it....I have never been emotionally able to handle the outside bag (must be why I practically blackmailed my Dr. 30 years ago to give me the K pouch instead of the outside bag! ) But I do council others! that is my job. Helping others to get through it and not fall completely apart...letting my clients know that there is someone, even a stranger, out there who cares. (ignore my own personal breakdown after my most recent stoma failure )
I can fully sympathise with the hiding from oneself while showering, dressing or even being intimate with others...I practically lived like a recluse when I had the strait drain bag and/or leg bag hanging off of me.
My only solice? Creativity. I write, lots. Stories, books anything really to take my mind off of me and put it elsewhere. I also cook..lots and creatively.
Look for the artist hidden inside of you. Find creative outlets.
Try not to center your thoughts on your body but your mind...
Sharon

Family and friends and God. Might sound cheesy but there is no way I could have made it through all this without that combination.
I got to a low point and stopped eating with the intention of killing myself or rather allowing myself to waste away and my family and friends wouldn't let me. They sat by my bed crying, pleading for me to eat and when faced with the knowledge that I was being selfish trying to put myself out of misery I started to eat slowly.
I would have died without them.

Hi Betsy
I had a friend who grew bonsai trees and new I was depressed, so he suggested that I should do the same. Long story short, it has been very therapeutic and almost self healing. I have gained back the control I have lost to my disease; even if it is over something other than my body. I believe mental healing is just as critical as the physical body healing. I know it sounds lika a zen-like-hippie thing, but it is true. I don’t know if you have ever sat in a dark room looking at a fish tank and just thought about nothing. Well, its similar. It’s a way to escape from the noises of the world, the anger and frustrations we have on a daily basis, and allow our minds to rest from the strains of our disease. What I would suggest is to find a hobby or some form of diversion where you can take refuge from the outside for a few minutes. Things like yoga, or sewing (yes, I sew), gardening, painting or drawing. Activities that allow your mind to relax; reading is good but your mind has to work to comprehend what you are ingesting. Find something to do where there is little brain power involved and I think it will help. I suspect that is why a lot of us are here: Soul healing.

StolenColon,
You are so right. I'm almost six weeks post takedown and it's been rough. I was truly suffering for most of that time and, frankly, depressed. But recently, friends and family have begun telling me that I sound and look better. I think they're nuts, but the truth is I did turn an attitude corner.
I don't know. Maybe I just got sick of feeling both emotionally and physically down, but suddenly I decided I was going to take my punches and just push on through. The mental/spiritual attitude does affect the healing or at least our ability to deal with whatever happens.
I'm a terrible pianist but whenever I play, I forget what's happened to me for a while. Same thing with reading. The iPod helps a lot too.
Thanks for this thread. It's good to know what other people are doing to cope.
Best,
Jeffrey H.

I agree that it is good to get away from your illness mentally which is why I am so glad that I can work (albeit part time) and still do all the normal stuff like meeting friends for lucn and retail therupy.

I also love to bake and used to do it professionally a few years ago. When I was going through my first year of surgeries (4 in 9 months) my brother and his fiancee asked me to make their wedding cake. It was a very intricate design with lots of tiny hand made rose buds which took hours of time and patience to make. This was just so theraputic for me at a time when I was so ill that I nearly died twice. It gave me something else to focus on other than my ill health. Here's a photo of that very cake.

Shell

Wedding_Cake.jpg (107 Kb, 65 downloads) Cake

Shell! The cake is absolutely beautiful! I wouldn't have wanted to cut it.

Oh my lord, Shell that cake is incredible. I can't even imagine how long that took to decorate.

Anyways, when I had my ostomy, really the only thing that got me through was art. I've loved drawing and painting my whole life, and when I was sick, it was really all I even had the strength to do. Unfortunately, last year I had an extreme vicodin addiction and started painting all sorts of bizarre surreal stuff(when you're sitting on the couch for a month, high out of your mind, you begin to have weird ideas)- crazy thing is, ever since I got over that addiction, I haven't been able to paint anything. All the ideas are just...gone. Drug suck, really.

Where were you when I got married Shell?
I could have used you!
Art, singing classes, cooking...yoga or learing a foreign language...it doesn't matter as long as you can think about anythingother than yourself and your body...
If I couldn't write I would blow a gasket or pop a cork for sure...I don't even feel the pain when I am writing!
Sharon

Thanks for the compliment guys.

Sharon, I wasn't that far away. Just 9 miles off the north coast of France. You can get a train directly to St Malo from Paris now and it's just a short hop on a boat for us to get to St Malo so I could have hand delivered it to you!

I agree that having something.... anything.... to take your mind off what you are going through is good for the soul as well as distracting from the pain.

Shell

Anti-depressants, counseling, friends and family and this board. I also use reading when any stress gets me down (reading or listening to an audio book). I don't know what I would have done without everyone here on this board. I could come here and everyone would understand why I would start crying at the site of an ambulance. It has been almost 4 years and I still come here almost every day to stay up to date and chime in to help where I can.

First of Shell, Beautiful cake! I have done cakes alittle for friends and I know how difficult it is. I can't believe that you did that when you were so sick. My hands weren't so steady.

I went through a VERY difficult time dealing with my ileostomy and the surgeries. Through God, Family, Friends, and this site I got through it. I also found people that were in my state with a pouch and I called them ALOT. We were going to the same hospital so we could meet and help each other from time to time. I didn't want to live at times and I still have issues from time to time. I was put on antidepressant and worked closely with my GP to get it regulated. If I missed it I was a basket case. I was so sick after my first surgery that my husband changed and emptied my bag for the first 2 wks. He's a great man! Just had to add that. My family never left me. Knowing that they were there made me want to fight. I also would read my Bible to find encouraging and uplifting verses.

I personally think that this is one of the most difficult surgeries that you can go through because it does affect you so much mentally. I have had people that have had heart attacks and repair done on their heart, tell me that recovery wasn't near as bad as what I went through. I don't know from personal experience (heart attack) but it made me feel better. I also had an aunt that has dealt with depression and she was good to talk to. She couldn't relate to the missing colon but she could relate to the mental aspect of it.

Just realize that you aren't alone. Come to this site and theres a ton of us in the same boat. PM people, find people in your area with a pouch to talk to on the phone, and don't give up!
Good Luck and God Bless,
Jessica Mahaffey