Considering permanent ileostomy

Hi Rhema! I would certainly try the drug options like Remicade before giving up. Look up Sara Ringer on youtube and facebook- she takes Remicade with her j-pouch because after her surgery, she found out she had Crohns, so her diagnosis really was Crohns Colitis and not UC. That unfortunately can happen. I don't believe Sara had constant problems with pouchitis, but the Remicade is helping her Crohns which for now, is letting her keep her pouch. These kind of drugs were not available for me when my pouch failed- and we tried many times over 3.5 years before giving up. The permanent ileostomy is really not any big deal, just different. But you are absolutely correct- the whole point of surgery is to get your life back and sometimes the ileostomy is the only one that will succeed. Try the Remicade and see- I would think you'd only have to wait about 1 month or two before knowing if it's working. And do keep us posted!

I am also being treated with Remicade for Crohn's. It's been 17 years since I had my first surgery. It's working well so far.

I do not see a perm ileo as a last resort. I had other options. I chose not to pursue them because I knew in my heart I was done. I was tired of trying things hoping they might work. I was tired of losing chunks of my life waiting for a "cure." I was tired of putting pregnancy on hold hoping for some miracle. Three different surgeons told me they could "save" my pouch. I didn't want it saved. I wanted my life back.

I chose not to take the Remicade route because I just didn't want drugs if I could avoid them. I got my perm ileo at age 30 and the pouch came out 18 months later (I wanted to do it all at once, long story about a crummy surgeon). That was 11 1/2 years ago. I've since had two kids. I take no drugs, except Immodium when I remember at night. I sleep through the night. I swim, take the kids to the playground, travel, everything I want, when I want. I have an unlimited diet. I'm living the life I want and it was my CHOICE. Frankly this is why I think it has worked so well for me, because I decided to do this, and was willing to take on all the risks and possible complications, for the hope of the quality of life I wanted. And it has worked beautifully. Never had one minute of regret.

Everyone has a different threshold for making this choice. Mine was much lower than most of the folks here. Lots of people here live with the chronic pouchitis I had and some with even worse symptoms, but they are willing to make the trade offs I wasn't. No one's right, no one's wrong. We all have to travel our own path and only you will know what that is for you...

Rhema-
I'm guessing you have the basics covered, but just in case: are you using something strong enough (for you) to slow things down (like Lomotil or even DTO)? Are you using Metamucil (or something like it)? Would you consider a fecal transplant, which apparently can work extremely well? When the antibiotics work they seem to kick in fairly quickly, so if you're spending many months waiting for an ineffective treatment to work I'm not surprised you're ready to throw in the towel.

Thank you to all who have so far responded. I'm in the process of researching and weighing all options so your suggestions and sharing of your experiences are most valuable to me. Rhema

I am also weighing my options. My j-pouch surgeries were in 2004. Since then I do not feel like my gut has slowed down very much. I now have pouchitis (noted on my last scope a month ago). First I completed a course of Cipro. I am now on Metronidazole and will see how it goes.

At night I wake several times and have leakage. During the day I have lots or urgency and irritation after using the restroom. I am getting tired of feeling worn out and even though Lomotil is helpful I feel it has a limited impact on motility.

Years ago I had several Remicade infusions (prior to surgery) that helped tremendously. I am going to talk with my Gastroenterologist about all my options.