Two proctocolectomies, no relief!

I was pretty confused by your topic title and the beginning of your post, because it really is impossible to have two proctocolectomies (removal of the colon and rectum) in the same person. However, I see that your first surgery was a proctocolectomy and j-pouch, and the second procedure appears to be a pouch advancement (where the retained rectal cuff is removed).

If your primary problem was refractory cuffitis, pouch advancement should have made a big improvement for you. But, if you also had chronic pouchitis before this procedure, then it sort of is a toss-up on whether removing the rectal cuff alone would work. 

You may actually need a full pouch redo, otherwise opting for an end ileostomy is your likely best bet. Has Crohn's disease of the pouch been considered? What treatment besides antibiotics have been tried? If Crohn's is not suspected, how about a Kock pouch or BCIR?

Jan

Thank you so much for responding. You are correct, I had one proctocolectomy then the rectum remnant or cuff was removed in the second sergery. I am afraid to get a pouch redo in fear of this all happening again! I have tried every medication possible to no avail. I am having a sigminoscopy at the end of the month. If nothing gets better, I really want this pouch removed and will need to get an ostomy bag for the rest of my life. The thought depresses me and I am really besides myself and feel so alone and incredibly sad.

If you search the current topics, there are a number of members who opted for pouch removal after pouch failure. Those who have completed their journey are quite happy with their decisions.

If you think you might be interested in a continent ileostomy, you do need to be reasonably certain you do not have Crohn's. If you may have Crohn's, you need to treat it before having surgery. If you really want to save your pouch, a second opinion at the Cleveland Clinic might be your best hope. If there is a chance, they can find it for you. There are also a number of highly rated surgeons in New York.

Jan

Thanks Jan. I am at my wits end.

Cheryl i am in the same position as you. You can email me anytime. I am at a loss and scared. My GI has recommended removal but my surgeon is still against it. But who knows things can change fast and really I'm not mentally ready. 

AllyKat, I have scheduled an ileostomy for June 22nd. Keep me in your prayers. I am excited about being pain free. It's not what I wanted but I need a quality life. I went through so much to avoid having an ostomy bag and part of me feels like I have failed but I have to realize that my body is dictating my quality of life. I am living on pain meds, regular meds to slow down the stool that blurs my vision and Advil, it's terrible. The day can't come soon enough

Cheryl, good luck with the surgery. Yes it's not the outcome we expected but you are young and will heal quickly. A friend recently went back to a ostomy and is healing fine. I don't understand with all my issues and with my GI approval that my surgeon will not remove my pouch or just give me a Ileo. Are u taking out the pouch or leaving it in? I worry that the older I get I'm 61 the harder it will be. This has been an on ongoing discussion with my doctors for a few years now. 

I'm not so young, I will be 56 at the end of the month so my healing powers are not as great as they used to be. I got the pouch 11 years ago and the scar tissue may make it difficult to remove but my surgeon will try to remove it. He wants it removed and so do I but he won't if it's dangerous. He will not know until he gets in there. I'm very sick now with the pouch and struggling throughout each day. I have to work until the surgery bc I've used all my sick time and won't get paid if I take off, thus, no way to pay my bills. 

Yes I understand I'm pretty sick now too. Who is removing your pouch? My Drs are at Cornel in NYC. I'm really sorry you have to work with this. I had to go on disability because of all my complications and multiple surgeries. I'm sorry that I went ahead with the pouch. My health would have been so much better all these years. Now back to the dr this week and here we go again. I really wish u a speedy recovery. Keep in touch.

I'm sorry you both are having so many problems. I know what you are taking about.  I'm on disability because of all of my health problems too.  I hear you about the quality of life issues. If my health problems were just related to my j-pouch I'd be more inclined to ditch it sooner than later.  I had a horrible time with the temp ileo - I know everyone says permanent ones are much better.  

It's difficult to make decisions when the options are neither that you want.  Like picking from the lessor of 2 evils.  I wish I could work again but that's not happening, pouch or no pouch. 

Take care

Thanks, I can't wait for the pain to stop. Everyday is torture