hi all. I’ve posted a lot about this the past year and a half. I have chronic partial bowel obstructions and am currently in hospital yet again with another. I’ve had over 20 in 18 months. I feel I’m finally in some good hands here and they think it is time to consider surgery to clear out adhesions and potentially take out the pouch. I’m writing for advice-has anyone gone back to the bag permanently for the sake of their health/quality of life? I said I’d never do it as I hated that bag but now that I’m am chronically sick, suddenly it looks like a better option than being sick and unfunctional all the time. I had to quit my job because these hit me so hard so often and we remortgaged our house to cope, not to mention living in chronic pain....Thanks for your thoughts and support. I always value this community so much
I don't know how long you've had your pouch.
I had mine for only two years and it never worked right.
I was in constant pain. And it was very painful you know where. Had the urge to go 24/7. Never got any sleep. Worked 40 hours a week. Went to work every stinkin day no matter how bad I felt. That says in itself I'd rather suffer than have an appliance on me. The thought was terrifying. So like most I put it off and just suffered in silence. My wife wouldn't agree with the silence thing. But outside the house I did. And outside the house was just work. I couldn't go anywhere else but the Dr office.
I've had an appliance for over 4 years now.
When you get one there is a period of dread. But I had to get over that and fast. Which I did. And once I did I didn't look back. It was "my cure".
Everything I was going through just stopped.
No pain. I finally could sleep. Yes sleep. Omgoodness not getting sleep and working 40 hours a week for two years wore me down to where I couldn't take it anymore.
Having a pouch was worse than the original disease to me. It made it worse. I tried everything to make it work.
I will never regret what I did.
Anyone in your position or mine knows when it's time and we are the only one who can make the decision to go to the appliance. It's easy to take care of. At least for me. I'm very fortunate.
It took me these 4 years to get back to my original weight.
I just had a Dr appointment and my weight was 174 pounds. I was at the beginning 176. I went down to 128 pounds and looked like a walking skeleton.
It's a terrible disease. But as my surgeon said to me.
I can fix you. And she did. I didn't believe her. But she did.
Nobody wants an appliance. Nobody! But I'm living proof there is a normal out here.
No pain. No blockage. None of that stuff.
I'm not saying you should. I'm just giving my experience with it. It's not ideal. It leaks. Once in a great while in my situation. But it only takes five minutes to change. I have to empty it. It's continuous. But it doesn't hurt to poop. And that in itself is worth it. No pain.
I was after two years in a bad spot. Had I kept my pouch it probably would have taken my life. Slowly. But it was doing it. I was stubborn. Thought I could make it work. Even being rolled into surgery to get it I was having second thoughts. But I put that out of my head. I put myself and my loved ones through enough.
Getting it was my fourth surgery. The easiest of all of them.
I've mentioned all of this before in past posts. But I don't like to hear of suffering because someone is afraid (hates) of an appliance.
No one knows you even have one out in public. And the ones who do forget. They are made so well and easy to put on and use. Just have to find the one that works for you.
OK. I'm done rambling as I usually do. Sorry.
I wish you the best. And a great outcome.
I haven't been to a Dr about my end ileo in over 3 years. I have had zero problems with it. Just one. A staple that came out. No biggie. But other than that it works well. I worry about it for nothing.
Duck, it’s clear to me what problem adhesion surgery would be intended to fix. I have no idea from your post what problem pouch removal would be intended to fix. Do you know?
Duck, so sorry to hear you're still having these issues. That's no way to live your life. My experience is EXACTLY the same as Mysticobra above, so I won't go through all the details. I was miserable for 12 years until I met the surgeon who said, "I can fix this". He gave me the ileostomy, and he removed the j-pouch (which you may not need to have done). I was in the hospital for 6 fairly easy days, and I've never looked back. I have my life back.
I love my ileostomy. It's easy to take care of, and it's easy to live with. I echo everything Mysticobra said about his ostomy. The positive benefits of having a normal life and feeling good again far outweigh the minimal issues of having an appliance. Also, it might help if you can find an ostomy support group in your area, as well as a good ostomy nurse to help you if you need it.
I've sent you a private message with my phone number in case you want to talk live.
Good luck to you, Duck. Please seriously consider this option and put this misery behind you.
Thanks all-laying here in hospital for the bizilliinth time with the Ng tube, I know deep down it’s the right call. I’ve had my pouch for 20 years and it’s just the past 18 months that have been fillled with all this chronic sickness. I don’t think it’s a gurantee to lose the pouch, but they said given how extensive the adhesions are I need to decide being ok with having a bag as that could be the outcome. I have a beautiful little toddler at home and I can’t be the mom I want for him with all this going on and really want him to have a normal happy childhood, not spend it worrying about mommy who is always sick. It makes me hopeful to hear those of you who did this got your lives back as that is my only wish at this point-to get off the sick train and enjoy life.
I had a J pouch for 30 years and also had lots of adhesions. Fortunately, none of them caused a blockage, but recurrent high grade dysplasia and a malignant polyp in the anal cuff made pouch removal necessary, I avoided getting an ileostomy by getting a BCIR (similar to a K pouch) and have had no problems with it. Removal of the J pouch and adhesions took my surgeon several extra hours, While there is no guarantee that one of these procedures would eliminate your blockage problem, you may wish to ask your surgeon if this would be a good alternative if your J pouch could not be saved.
No matter which way you go you have to get yourself out of the cycle your in. It sounds terrible. I've had obstructions and they are painful. I also had a twisted bowel (had to have my 3rd surgery because of it). But what your going through and how long you've been going through it is no way to live.
When my surgeon took my pouch out she left everything intact in case I wanted to try the pouch again. I won't but I was never sewn closed on the outside. I still have my anal canal. And anus. Everything is still there. That's a path you may want to ask about.
I'm no expert and most of what I went through is fading now. As is my memory with age. Lol.
I wish you the best.
Thanks all. I go for surgery tomorrow. Sitting here with tpn in one vein and meds in a second Iv. They said they won’t know exactly what they’ll do until they get in there, but think it will help a lot and get me my life back. I appreciate u all sharing your experiences here-friends and family are wonderful and supportive, but no one gets it like those who have been through it. Wish me luck tomorrow!
Best of luck to you, and I hope you have a fast recovery. Soon this will all be in the past, and your life will be so much better. Let us all know how it goes.
a little update, at the last minute yesterday they cancelled my surgery because they think I’ve been misdiagnosed the past 18 months. I was always told I had bowel obstructions from adhesions, but the j pouch specialist that has finally got involved thinks it’s a functional problem with the pouch, I’m not sure what that means and have a follow up with her in her office, but they said they will likely take my pouch down. I’ll find out more when I see her. She also said I had widespread bowel immotility. Is this what happened to those of you with end ileo’s? Pouch disfunction? This has been such a frustrating journey, I wish they’d just fix this.
My issue was chronic pouchitis. How frustrating this must be for you. Try and hang in there. It sounds like you're close to resolution.