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10 replies

Going back to bag...any advice?

EthumbEthumbMember
Long story short....I thought I had it figured out until the flagyl caused my fingers and toes to go numb and the cipro set me up for c diff. I'm taking vancomycin and bentyl now and I am not seeing any improvement. Basically I am tired of chasing the symptoms and looking forward to life with a bag if it means feeling normal again.

So I guess my question is.....for those who went back to the bag, did you get your life back or are you still having problems? I realize that it is a big surgery to get a jpouch removed (and that's what the doc said he would do) but at this point I would rather go through a big surgery knowing that I will feel better in the end rather than keep taking pills and hoping for the best.

Anyway, am I looking through rose colored glasses thinking that the bag will fix my problems?

Right now I am running to the bathroom 20+ times a day and I am experiencing gut wrenching pains when my guts decide that they want to do flip flops. I am also losing weight. I am 5'10" and down to 139 lbs.

Just wondering if anyone else has been through this and had a good experience going back or if the problems continued after getting the bag back.

Thanks,
Eric
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L liz11Member
Eric- got my permanant ileostomy four months ago after my jpouch failed miserably. And eventhough I am still recovering from the massive surgery due to many complications I encountered and my bottom wound is still problematic and quite painful - my life is so much better. I can eat ANYTHING I want, I am virtually drug free and not putting poisons into my body, I have gained weight back, and I am not tied to a toilet. What more can I say!
M MaximausMember
Eric,
I can relate to where you are. I had a mucosectomy two weeks ago to see if that would help. It does not seem to have worked and I am most likely getting my pouch removed in a month or so. I will be happy to share my experience with you as it unfolds. I am worried about the healing after but looking forward to not always feeling like I have to go the bathroom. Good luck with your decision. I know it is very difficult. Thank goodness for people like Liz, that are always willing to share their experiences.
EthumbEthumbMember
My surgery is scheduled for september 7th. Seems like a looong time from now.

I had some complications on the first surgery. I spent 13 days in the hospital and had an NG tube, a spinal thing and was fed through TPN. I'm hoping this one is not quite as bad.

How bad is the butt wound when you go through this. Is that the worst part of it? Does it still feel like you have to use the restroom. I am looking forward to never setting on a toilet again. I know I will but it would be nice to not have the urge.
ghostthepastghostthepastMember
after 6 years of struggling with cgronic j-pouch issues,my j-pouch failed for the second time last year.after all thes tests to help save it i decided to get a permanent end ileostomy.going back to bag wasnt what i wanted in life but i only had 2 good years with my j-pouch out of 2 decades.for me,even when my j-pouch was functional,it meant chronic pain,heavy narcotic pain killers,constant surgical maintenance,severe depression,anxiety,ptsd,an eating disorder and many er visits.i had my surgery in march and so far am doing much better.i gained some weight back,i was down to 117 when i had the surgery,am now at 130.my regular clothes fit me,im eating regular food and i get to live my life outsie of the hospital.i remember severe pain,misery,feeling sick,being bedridden with my j-pouch.there comes a point when you know youve had enough and you dont want to suffer anymore,no matter the cost to your self image and pride.its something to admit,the bag saved my life from j-pouch failure twice.right now my main issues are blood clots.im prone to them.other than that,the bag is working and im home instead of the hopsital.
C chiromancerMember
I have gone to an end Ileo two weeks ago. My pouch is currently in place but disconnected. I dont think this is an option for you because of your pouchitis, the pouch should be removed. I will likely have my pouch removed in the future but it is behaving pretty well right now and I am feeling decent. What probably is an option is removing your pouch but not removing the anus and being sewn up. From what I can tell this is often a difficult to heal wound for some people. Worth asking your Doc about.
L liz11Member
eric-
Use the next month or two to get your body and mind as healthy as you can. This is a BIG BIG surgery. Speak to your doctor about the anal wound, healing, and potential complications... just so you are prepared. Unfortunately I had a month long hospital stay with this surgery and was sent home with a picc line and IV antibiotics. I have had several additional surgeries for abscesses and wound problems. Still painful to sit and waiting for the day that I can get in and out of a car normally. No feelings of having to go to the toilet, except for right before the last abscess burst. With all of that said, everything else is fabulous. I am exercising, eating anything I want, and best of all, I can live my life virtually drug free and not being attached to a toilet!
EthumbEthumbMember
Maximaus- I will definitely be looking forward to reading about your experience.

I can't fathom having pains worse than I already am but we shall see I suppose. Maybe I will get some good drugs out of the deal. I'm talking stuff that makes me flit around the front yard like a butterfly type stuff. I'll tell them that the narco is for people who aren't totally committed to pain management.

I remember having a feeling of complete relaxation last fall when I had my temp and was setting in a lawn chair outside. It was a feeling that I had not had for a long time because of UC. Now when I start to get that feeling I have to run to a bathroom. My jpouch likes to take advantage of the situation when I let my guard down.

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