Considering permanent end Ileostomy from J-Pouch, will you share your stories?

Seriously Fatty acid eemias for pouchitious!!!

I had my pouch done in 1998. Pouchitis almost immediately, never under control. Cipro non-stop for 3 1/2 years while I tried everything I could - holistic, drugs, diets, etc...Nothing got me any relief except Cipro, which I needed in higher and higher doses.

Decided to have pouch out but was convinced by surgeon to just disconnect with an end ileo (even though I expressly told the surgeon I would never want the j-pouch to be connected again). Well I still had pouchitis, developed some neurological symptoms that I was told couldn't be from the pouch, and had 4-8oz of discharge daily from the disconnected pouch.

18 months after disconnect I found a new surgeon and had my pouch out. Life began again that day. Yes, the surgery is very complicated, more complicated than the pouch creation due to the number of blood vessels that attach to the pouch. However, my surgery was 3 1/2 hours (dr planned on 5) and I was out of the hospital in 5 days. Two weeks post op I was up and about walking my neighborhood. Within a month I was walking a mile. Four months post op I went to Mt Hood and did a 7 mile round trip hike to Ramona Falls. Eight months post op I kayaked 5 hours in central Florida.

In 2006 I had my son Alex after one round of IVF. In 2008 I had my daughter Meghan after one round of IVF.

I take no medications, except for immodium at night when I remember. I eat what I want. I sleep through the night. 13 years post ileo and 11 years post pouch removal, I couldn't be happier and have never had a moment of regret.

Yes, there are potential complications. Several members here have had longer recoveries with complications. When I was making my decision, my GI dr said one of the biggest potential complications is that the tush wound wouldn't heal well; he said he had one patient where it took a year. I knew I was ready for the pouch removal when I was ready to take the possibility of that year of healing a wound over dealing with the pouch.

I think I recovered so quickly for two reasons. First, my pouch was making me sick. Once it came out, my body snapped back. EVen the neurological symptoms that "weren't from the pouch" went away.

Second, I did a mind body program (Prepare for Surgery Heal Faster by Peggy Huddleston) before and during my surgery. For a month prior to surgery I did a guided meditation tape twice a day. I wore headphones wiht the program in the OR. My anesthesiologist had statements to read to me as I went under. For the month before surgery I got a massage once a week from a therapist who also practiced Reiki. I'm not new agey, but all of these things gave me a sense of control over the process - that I was participating in my health and doing something instead of having things done TO me.

All in my head? Maybe. Don't care - it worked. My recovery was fast and I haven't had a GI problem since. The worst part of the recovery for me was the tush stitches. No way to get comfy with stitches in your behind. Once those came out, I was a new woman.

Please don't hesitate to ask if you have specific questions. You sound like you know what you want and that is half the battle. I had to go to four surgeons till I found one who supported my choice. But she was fantastic and the results show that I was right the pouch needed to come out and she was right to listen to what I needed and wanted for quality of life.

I'm off on vacation Thursday so it might take me a while to respond. I'm going to Disney World with my family (hubby, 5 year old daughter and 7 year old son) and our friends (a mom, dad and two kids). I intend to swim daily, go down every water slide, ride several roller coasters, eat funnel cakes, and slushies, and cinnamon rolls, and all kinds of wonderfully bad for me stuff and not think twice about it!

Hi JillM,

Thank you so much for your response and openness. It really helps a lot. I am meeting with my doc in a week, and after talking to her today we are on the same page with the surgery. I am grateful to have a supportive doctor. I imagine I will meet with the surgeon on the same day, so I will most likely be asking more questions We seem like similar minded people based on this and other posts. I have some personal questions that I will send in a private message if that's okay Have a fantastic vacation!

Hi Kirtymusic,

I seem to be in a very similar situation to what you were in not too long ago, with the exception that I was now diagnosed with Crohns instead of UC. No meds seem to be working and I think I'm ready for surgery. I was wondering if you ended up having the surgery and if your doctor gave you any advice/ input regarding having this surgery?

Thanks,
Stephen

Due to constant irritation and dysplasia in the perianal area, my gastroenterologist recommended removal of my J pouch and to have an end ileostomy. I wanted to avoid the bag if possible and discovered the BCIR procedure (a modification of the K pouch). I had the BCIR surgery 4 months ago at Palms of Pasadena Hospital in Florida and now am realizing the advantages of thus procedure. Palms has an excellent web site which has lots of information on the procedure. I wish you the best on whatever you decide.

BillV,

I will definitely look into the BCIR procedure- I didn't even know that was an option so thank you for letting me know!

Stephen