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i know you must be sick of me but I am so sorry I had this surgery. I just should have done an ostomy. All these surgeries just caused adhesions that are making my life a misery along with chronic pouchitis. The surgeon does not want to operate again or give me an Ileo or perm ostomy. Now let's add anxiety to the list. I'm afraid to eat too. 15 years dealing with this. In and out of hospital, stupid tests after tests. Meds daily. My hubby yells at me, you can't look back, this was my choice. Well 15 years ago this was the best choice I was told. I'm not getting younger and it's taking a toll instead of living whatever life I have left. I use to roll with the punches and after every problem had faith stupidly I would get better and sometimes for a while I did, but now I no longer feel that way. I guess I lost faith And fear for the future.

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I just don't understand why they won't consider an ostomy. I do understand the adhesions issue, but... Damned if you do, damned if you do not. I'd be seeking another opinion, for sure.

I'm sorry you never had a good run. Twenty-four years ago, I was told "cure," and while it's not, for me, it's been a blessing. Twenty uncomplicated years. I consider that a success.

You can beat yourself up over it daily, and I imagine you do, and in your case, with good reason.  However, here you are. While I understand the docs you're with are unwilling to budge on things, I'd seriously consider getting another team. Is this an option?

Hi Ally,

No we are far from sick of hearing from you...We are sick to the heart that you are suffering so much with no solution in sight...This is worse than unfair.

Time to maybe sit down with your surgeon and explain to him/her the quality of life issues that you are facing...This is not the life for you if you need to be on a boatload of anti-depressants and meds just to get up in the morning...you may need to change doctors...

The 'you should be used to it by now' or 'get used to it, this is your new normal' phrases that they throw at us when they refuse to fix us are unacceptable...

Do not accept no for an answer...you deserve to have a real life where you can eat (one of the top essential bodily functions in my opinion) and  eliminate (ditto) without fear of consequences.

Fight the good fight like you always have and win it!

Sharon

It would. be nice if I could get an appt with him. Now he is on vacay and his mean nurse told me that there is nothing wrong with me and go back to the GI. This is adhesions lady, not a GI problem. I can feel the pulling on the left side which turns into pain and dry heaves. Told me to go to ER. I should have gone back yesterday but they would have just let me rot in the hall on a holiday weekend. Sure I have anxiety cause I don't know what to eat. Seems anything can set this off badly And it's not showing up anything on the tests. Well, adhesions don't show up on tests. 

Well... I went the same route.  Try the Pouch first.
But I know now it ain't gonna work.  So I see the Osteomy in my future.  Can't afford to do it now.  I will be off work too long and I am still recovering financially from the first nine months off.
My pouch is healthy and all but I leak all the time and by this point I should not have to push as hard as I do.  Only occasionally do things just come out.  But with the pushing I have to do daily I am gonna pop something or prolapse.
But I also know I will just be able to get it done.  No problems from the surgeon.  She said she would do it.
I don't want to wear a bag but I am sure I will get used to it.

Best thing my husband did was to get rid of the colon (at the time,I was very scared for him), however, he was never in remission with colitis and he was on steroid enemas.  That made him sicker than the colitis.  20 years later (knock on wood,with a few bumps) he is doing ok.  I am shocked that your husband is yelling at you.  Ugh.  Please don't be sorry that you had the surgery...10 years with colitis you had more of a chance to get cancer.  We are not 'sick' of you.  We want the best for you.  Sending good cyber thoughts..

 

Misticobra,  I've been giving myself small enemas 4+ times a day.  It sounds similar to you, I need to push and just a small amount comes out.  Then I use the "turbo function on my bidet in order to get the rest out.  Tomorrow I'm getting a dilation under sedation.  They did a x-ray with contrast and there is just a tiny narrow place at the bottom of my pouch I've had such bad backups that the small intestine about my j-pouch is also inflamed from the feces left inside me too long. I've been on antibiotics for 8 months straight and there isn't any pouchitis problems in the small intestine and in my pouch it's "mild".  The problem is my chronic cuffitis that has caused the scaring that's become the stricture.  Your problem sounds similar to mine. I've been so miserable the last 8 months I was ready to get a diverting ostomy if needed. I hope you are feeling better soon. 

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