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helena72 10-29-2008 05:46 PM

Just need ostomy experienced friends to advise.
Hi, this is my first time to ever post any kind of question on the internet. I am almost 73 years old, female. In May of 08 I had a terrible abdominal infection. Diverticulitis and a "tunnel" it had made into the bladder. I suffered for many months and no one knew what was causing it. Then one monrning I got up with hight fever and such weakness that I could'nt walk to the kitchen. My feces was being lost through the urethera. Long story, short I went to the em and was immediaterly given antibotics, blood, etc., and scheduled for surgery the next morning. They first did the bladder cleaning out, repairs and such, then scheduled me for colon surgery two days later. I hardly remember waking up. When I did I learned that I had a colostomy bag. To say I was in shock is to put it mildly. Scared for the next three days and almost in a coma.

I remained there for the next 13 days. Hardly able to sit sideways, much less walk. I finally made it on my feet long enough to get them to dismiss me. They did, with catheter intact and a health nurse coming daily to show me how to change the bag which I still couldn't accept as part of me. I hate this being so long but I want you all to know that you are not the only ones who have denied this attachment to your bodies.

It took me about a month to get to the point that I could manage the thing.
My doctor said it would be Oct. before he could do the reversal surgery. I went in to see about having it done but he wouldn't consider doing it because I was still so weak. Now I am trying to build up my strength and hopefully get it done. But, also right now I am having second thoughts about it. I learned that I have PMR which was causing many symptoms I thought was because of the original surgery. I was put on Prednisone three weeks ago and feel so good I hate the thought of going through all that again. Plus, and this is a big plus, I have learned so much about taking care of myself and the ostomy pouch! I don't mind it at all. It has become a routine and so predictable! I just went on my first overnight trip since the surgery and it was amazing. Hardly as much trouble as I went through before. No unexpected and urgent stops. All was under control. As far as odors, there are none. The charcoal filter takes care of that and watching what I eat which was the same as before.
If anyone out there can talk with me about this I would appreciate knowing your experience as to the decision to reverse or not. The pros and cons, etc. I have heard that sometimes it can make matters worse. Thanks for hearing me out with this long letter. If I can be of help to anyone else about this experience please let me know. I feared it so bad at first as I know you all did too. Thanks again.

nora01 11-15-2008 07:16 PM

Re: Just need ostomy experienced friends to advise.
sorry to see all the pain you've been.

I don't have an ostomy but my husband had a temporary ileostomy in May that was recently reversed. He had diverticultis which lead to colon resection but complication (leak) and had the ostomy.

Good luck !:angel:

helena72 11-18-2008 03:12 PM

Re: Just need ostomy experienced friends to advise.
Hi Nora 01, Thank you so much for your helpful reply. I keep reading and learning so much more than the doctors have shared with me. I suppose it is really up to us to do the research. I know I will wait until Jan. before considering the reversal again. That decision takes some of the pressure off for now. Thanks again. Hope your husband continues to get better.

nora01 11-19-2008 07:31 AM

Re: Just need ostomy experienced friends to advise.
Good luck with your surgery!

Just caution to be careful now and after surgery as it is common to develop a hernia at the ostomy site since they have made a weakness in your stomach.

Unfortuately this was not something we were aware of until it happened.

Saying a prayer for you:angel:


peacefrog 11-24-2008 04:39 PM

Re: Just need ostomy experienced friends to advise.
I'm sorry for all you've been thru, but it sounds like you are strong and are coping very well. I had a temp(3 mo) colostomy for diverticulitis with perforation and peritonitis 2 years ago. I had the reversal and tho it was major surgery, going in thru the original incision again, I was strong and healthy going in so it didn't seem as bad. I have issues with frequent bms still, but I always did before so thats normal for me.(imodium works well for me) I have only had the horrible cramps twice since the resection. Before it was terrible pain and I had no idea it was so serious. Just thought I had a sensitive stomach that would cause sweats and chills and hives with a bowel movement. All those years I suffered not knowing. I wasn't sure whether to reverse or not. I had an awful time accepting the ostomy, but came to think of it as afriend that saved my life. I'll always be grateful for it. I have no regrets and reversing worked out well for me. I wish you the best. My best wishes to you.

auntjudyg 11-25-2008 09:08 AM

Re: Just need ostomy experienced friends to advise.
Hi Helena! I feel like I am reading my life story in reading your post! I had infected diverticulitis and a fistula (tunnel) to the bladder also. I had the temporary ostomy and at first was told that the connection would take place in 6-8 weeks. Well, they also thought I was not ready for it and it was almost 6 months later. I understand having second thoughts about the reconnection. It did have it's advantages.

I guess it is a matter between you and your doctor. (Yes, you do have to research things yourself!) But I would just add that the reconnection was nowhere near the ordeal of the original surgery. The fact that you had considerable infection when the original surgery was performed probably contributed a LOT to the fact that it took so long to recover. That would not be the case with the reconnection. Just something to consider.

Keep us posted! Thanksgiving takes on new meanings after going through things like this, doesn't it!

Best wishes! Judy

helena72 11-28-2008 12:12 PM

Re: Just need ostomy experienced friends to advise.
Hello auntjudy, It means so much to me to know that I am not the only one to experience this awful thing. Yes, it does sound like we had the same experience. Who would have thought? I hope you are doing well now and that there are no aftermaths to deal with.
I am waiting until Jan. to have the reversal, as I said before. I will keep you posted when the time comes.
Yes, Thanksgiving really made me more conscious of the blessings I have, and how lucky I was to get to the hospital in time for them to pull me through it. The ostomy was a lifesaver and I am now feeling that it such a part of me that if the doctors tell me they can't do it I will be ok with that too.
Good luck to all of you. I am enjoying reading and getting responses from this site, with the knowledge that are REAL PEOPLE out there with similar experiences. I am trying to learn how to use this site. It is a real good thing! God Bless.:)

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