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Posted 2/11/2012 3:00 AM (GMT 0)
 I know it has only ben two weeks since surgry, i just got home yesterday. i have a nurse that comes twice aday. the problem is i still can't look at the stoma without having a panic attack. i feel like i have someone elses body. is this normal??? or am i just freaking out over nothing. shocked one last thing how long before you start feeling normal again?
Posted 2/11/2012 3:04 AM (GMT 0)
I am sure it is very hard to accept this for some people. Maybe your medication for your panic is not strong enough to help you at this time perhaps? The fact your surgery was an emergency and not something you had time to accept and get used to before the fact certainly makes the adjustment harder.

I hope it is not too long that you can accept this and look at it as a friend and lifesaver. Prayers and hugs to you.
Posted 2/11/2012 9:11 AM (GMT 0)
Starlight:

This is normal..It took me a while to look at my stoma without fear or trepidation, especially when changing..

Your nurses come twice a day? Nice! I was lucky to get one every 3-4 days..lol!

Are they qualified WOCN's, or just nurses that have experience with ostomies? There is a difference..

You just had surgery..rest, relax, and heal....give your body much leeway in recovery...and, keep us updated!

jimmy
Posted 2/11/2012 1:48 PM (GMT 0)
It does take time. Mine was not an emergency, but I only knew I was getting it a few days ahead of time. That didn't give me much time to truly wrap my arms around what I was having done. When I got home and saw how helpless I was it really bothered me. I didn't like looking at or touching the stoma either. It took me a long time to feel okay again, and even longer to feel like I felt before being admitted into the hospital. Now I would say I feel better than I have in a very long time. I still do tire easily though, and can't be on my feet for extended periods or walk long distances without feeling it (I am 10 weeks post op and back to working full time).

It does get so much easier as time passes. I really love that I can eat almost anything again. The only foods I still won't try yet are fresh fruits and vegetables because I really don't want to deal with a blockage. Instead, I have been juicing all raw foods and I am loving that. It is so great to ingest whatever nutrients I need without worrying about how it will affect the IBD.

My stoma really doesn't bother me to deal with either anymore. Really, no one knows about it unless I've told them (maybe 10 people total know, not counting medical professionals), and I wanted it that way. I want to feel as normal as possible, and don't want to be treated differently or looked at through eyes of pity. I didn't think it would help my emotional recovery to have people asking me a million questions just to satiate their own curiosity. Since no one knows, I don't think about it until I have to take care of it. I don't think there is anything wrong with choosing not to dwell on the fact that I have an ostomy.

I get my support from here and some people I met IRL who have an ostomy. All of my questions get answered from those avenues and the support has been great!
Posted 2/11/2012 4:23 PM (GMT 0)
I'm also wondering if you might need a higher dose of your panic medications. You may need to make some changes even if the dose stays the same. I was on an antidepressant going into surgery, but once I had my ileostomy that medication quit being effective for me because it was a timed release version and it wasn't getting enough time in my digestive system for all of the medication to be released. I am now on a non-timed release version and it is working much better. Something to look into with your own meds, too.

It is normal to have a difficult period of emotional/mental adjustment to the stoma. I felt very low and insecure initially. It was a weird time because I was so relieved to be free of my UC, but I was depressed and insecure about the ostomy at the same time. It does gradually start to feel like just another part of your body, but it takes time. Have you thought about naming your stoma? It might sound silly, but a lot of people do it. I did, and at times I think it helps with the process of learning how to relate to the thing poking out of your gut.

Hang in there though. Give yourself room to have your feelings and definitely check on those potential medication issues. Time also will help. :-)
Posted 2/11/2012 7:12 PM (GMT 0)
     Mine was not an emergency surgery either.  In 2008, after my second hospitalization for UP, I went to a local colorectal surgeon who told me I would be worse off after surgery...i.e....maybe going to the bathroom 8 - 10 times a day (I was going about 7 times a day) and he never even mentioned having a permanent ileo.  I suppose he just took it for granted I wanted a j-pouch.

     Fast forward two years, in 2010, I was soooooo sick, prednisone dependent, 6MP, Remicade and Humira all failed.  I was 63 yrs old and the meds had taken a toll on my overall health...uncontrollable high blood pressure, osteoporosis and prednisone induced type 2 diabetes.  I then knew a permanent ileo would be the way to go.  I convinced myself having an ileostomy would not be that bad.  This time I sought out a prominent colorectal surgeon in Philadelphia (I live in south Jersey).  He said I was not a candidate for j-pouch but since I was psychologically ready for an ileo, he scheduled the surgery to be performed six weeks later.  He wanted me off the Humira for that time frame.  However, I was still not able to wean off the prednisone by the time of my operation.

     I never looked at my stoma with disgust.  Every time I look at it I realize it was a life saver.   My home health care nurse who visited me for the first month after my hospitalization said that many people have problems getting used to their stomas.  Do you have a local support group in your area for people who have had ileostomies?  Perhaps you could look into joining one?

Posted 2/12/2012 1:45 AM (GMT 0)
Your surgery happened in such a stressful way, and there was so much that was especially stressful about your hospitalization. You've got so much emotional stuff to heal from, as well as the physical, and it must be so mixed up. I hope you can find some patience, and also get some help w/the emotional part, whether it's changing your dose, talking to a counselor, going to a support group, or more than one of these things.

I think what you're going through is very normal. My reactions were different, but my circumstances were also very different.

Someone told me recently that it takes 6 weeks for the body to recover just from the shock of anesthesia.

Hang in. It will get better.
Posted 2/13/2012 6:18 AM (GMT 0)
I have had my illeostomy for almost 3 weeks and I still feel different when I look at it. I went through a little depression for the first 2 weeks. Im just now getting better. Ive heard from others that it is completely normal to feel depressed or different after getting the bag. I am 22 and its a huge adjustment for me. God and my husband have made this easier for me.
feel free to email me at [email protected]
Posted 2/13/2012 4:19 PM (GMT 0)
Your reactions are completely normal. We all react differently to trauma. After my colectomy, my anastamosis disconnected, so an emergency ileostomy was performed to save my life. I knew it could happen, but was so optimistic that it wouldn't. The leakage caused a bloot clot by my liver and sepsis, so I was hospitalized for 6 weeks. Also my incision bled and had to remain open. It's been a year and half. Gosh it was a journey. First 3 months were awful, I don't know what was worse, the open wound or the ostomy. After the wound closed, my abdomen was just so disfigured. I also hated my ileostomy changing, as I hated to look at my stoma. It took time, some days I wanted to call my surgeon and plead to give me antidepressants. With time, I was able to handle my emotions better. I still hate looking at my stoma, but I don't cry anymore as I'm changing my appliance. This forum, changing the negative people in my life, reading, exercising, doing walks and cycling for causes', learned to knit, volunteering.....all this helps. Talk to a counselor, maybe tweak your medication for now. It will get better :-)
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