Comments on: What to Do?

By: Jennifer

Jennifer — Sun, 25 Jul 2010 16:58:03 +0000

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By: Lizz

Lizz — Sun, 04 Jul 2010 19:00:22 +0000

Thanks, Megan, and congrats on your adorable baby girl!!! What a sweet heart!
I probably will go ahead with the cuff surgery-I think I need time to wrap my mind around all this before committing to anything. Surgeon did say that of course, it could end up being CD after all, but that it didn’t look like it to him. SO yeah, if having an ostomy and being off all these meds is an option-I’m pretty much in. It would be so nice (and strange!) to feel good and lead a semi-normal healthy life. Seems that whether it is CD or pouchitis, the J-pouch isn’t performing well (turns out it’s a slacker!) and that relieving it of its duties might be the right step.

By: Megan

Megan — Sun, 04 Jul 2010 18:26:49 +0000

Lizz, what a journey you’ve been on trying to gain health. What is hard to wrap my mind around is that you may not have CD? And instead a chronic case of pouchitis!? So then the questions to ask revolve around whether you’ve exhausted all pouchitis options. And I’m sure you already have taken all the pouchitis antibiotics, probiotics and now the rectal cuff surgery. I think having the rectal cuff surgery is an important step is deciding whether or not to go to a perm ileo. All I can reference is Mark’s surgery decision process, but by the end of UC we found a GI that set him up on a 3 strikes and you’re out type of care. In other words, she set up the last three care options and time frames and if those didn’t work then surgery was the final care option. It was nice to have enough time to try those 3 things before surgery. It gave him/us time to cope with the jpouch surgery. Where in your case if you set up a decided care routine before deciding on the perm ileo then you’ll have enough time to try some other things to keep the jpouch while coping with the whether or not a perm ileo is your best option. For Mark by the time he got to the last care option and he could see it wasn’t working he was so ready to have the surgery.

I KNOW you’ve done all this before, but maybe, an approach like this could help you in structuring that you’ll cope step by step, (1st) rectal cuff, (2) probiotics or other care options once the rectal cuff is gone, and (3) whatever comes next if 1 and/or 2 don’t work. The perm ileo may or may not be inevitable, but by giving yourself a care plan with steps, you will be giving yourself time to cope with whatever is the reality without feeling any regret such as “I should have tried the rectal cuff surgery, what if it would have worked”.

All I know is that if you do not have CD is the best news ever, and now you’ve just got to deal with one more issue (is it the jpouch?) before moving on with your life healthy and free of being sick. Mark’s surgeon always said something so simple about the jpouch that made us understand Mark had a 50/50 shot at life with a jpouch or life with a failed jpouch and perm ileo – he would say “a jpouch is forcing the small bowel to do something it is NOT intended to do by nature – it may or may not accept its new job.”

By: Lizz

Lizz — Sun, 04 Jul 2010 01:09:48 +0000

Jackie, I’m with ya-I’m definitely leaning in that direction. I’m SUPER tired of dealing with all this crap. I feel like the universe is making it very obvious that maybe Lizz+a j-pouch aren’t fated after all. I have to tell you I had that same “Do I go through with this or just keep the bag?” before the final 2 surgeries. I was happy with that I did the Jpouch overall, but I have just had too many freaky complications! I’m not crapping blood or in excruciating pain, so to compare it to before isn’t a fair comparison, but considering that I’m on twice the dose of Humira, plus a lot of other crap and I still have all this inflammation just makes me feel really sorry for my body. I love the convenience of not having to deal with the bag. I was trying to remember what that routine was like, but at least it’s freaking predictable and I could work and have a more “normal” life. I worry about my body image with it. Before because I knew it was going away, I don’t think I ever really dealt with that part (although I had it 8 months and dated someone while I had it-it wasn’t an issue.) I didn’t feel particularly sexy, but I’m older, wiser, and as you said, he’s locked down now so I don’t have to deal with dating. I guess it would be worth it to give this anal/rectal cuff thing a shot before I throw in the towel completely, but I dunno that I want to put myself through it when I feel the inevitable is the ileo.

By: Jackie Z.

Jackie Z. — Sat, 03 Jul 2010 23:30:24 +0000

Lizz,
Don’t you ever just get tired? I mean you’ve had surgery like a billion+ times? I know that as sick people we all long for the “normal, regular” life again, but maybe a perm. ileo is your norm. Maybe thats what you have to do to be happy, and while that sucks, and it may take some time to get used to… as an outsider it seems like you’ve put yourself through the dang ringer. Granted, I’m still here in bag land, but I have been happy since I got this thing. Shocked myself. I even considered not doing the next 2 steps because I was happy being here.

Besides you’ve already tied the dude down now, hes stuck with you for life now!

Good luck lady, but I would consider how hard it is to get to where you want to be, hard on you, your body, your loved ones, versus calling it, and it being all over. A different outcome perhaps…but perhaps a better one.