Going in for take down. So worried!

When I had my temp ileo I was thinking why go ahead with the j-pouch connection, it was nice knowing when I had to empty the pouch vs. never knowing how things would be. But 9.5 weeks after the j-pouch surgery I had take down. I had a rough recovery, but now 3 months later things are getting much better. I still have alot of bathroom visits in the late afternoons and evenings but my mornings are really good and feel almost "normal". I have no pain like I did in the UC days so that is a major plus. I do have a bidet to combat the dreaded butt burn and that helps alot. When not at home or at work I have a handheld bidet that I got free from the home bidet. It is all worth it in the long run. Def. takes time and lots of patience. Hang in there!!

What specifically are you worried about? I too was worried about the take down and over planned in response. Recovery from the take down was shockingly pain free and easy until I developed a high acid output about two weeks out. It was easily taken care of with Questran and Immodium before every meal.
A j-pouch friend and my surgeon recommended doing pelvic floor and rectal muscle exercises as much as I could before take down. I think all those exercises is why I had so little trouble with continence after take down. I do about 60 a day. You can do them anywhere, anytime. I also keep 5 lb weights by my bed so I could keep my arms in shape while recovering.
It is a month out now and I still have rectal pain if I exercise too much but I only use the bathroom 6 to 8 times a day. (I gained weight too after the first surgery but I am losing it now.) I urinate that often anyway because I drink so much water. I keep to a low residue diet because my body is still sensitive to what I eat but many people jump right back into regular eating habits. I eat fresh bananas and oranges. I still have not tried any raw vegetables but I am doing fine with cooked veggies except for mushrooms.
Cleaning with Balneol instead of a flushable wet wipe made a huge difference in fighting the dreaded butt burn. You can find Balneol next to Preparation H at Walgreens. It cleans as well as a bidet and leaves behind a soothing lotion that protects skin from further acid. On difficult days I place a small cotton gauze coated with Calmoseptine on the burning area and leave it there. The relief is immediate! Not everyone develops butt burn.
I use Depends on days that I do not feel confident about control and a simple panty liner on other days to prevent any leakage problems and prevent the Calmoseptine from marking clothing.
I scared myself before take down reading posts from people who have not had an easy time with the j-pouch. Then I thought, it is mainly the people with problems who would be motivated to post questions in a forum. The rest are out happily living their lives. I love my j-pouch. I am very happy that I had it done. You are in the right place to learn as much as possible. Hopefully, learning as much as you can will ease your fears. Best of luck!

Alli- what you are feeling is totally normal. I had such a rough recovery after the first surgery and like you didn't feel I would ever be ready for takedown. I waited 16 weeks and just went for it. I did develop an ileus at the hospital requiring NG tube and picc. Those were some rough days. Today I am 6 weeks postoperative. I'm starting to eat almost everything. I'm regaining my strength. I'm going out to the store, beauty shop, lunches, dinners, movies, kids sporting games. Although not 100% yet this is the best I've felt since my last round of remission from UC. (which was last year) I do get butt burn but have a bidet and use the creams religiously. Good luck and don't let the possibility of a complication hold you back. Odds are in your favor

dont worry its normal. I had my 1st surg when the removed colon and did the recontructive sug (j pouch) i wore the "bag" for 8 weeks and as crazy as it seems I felt safe. It came off that was back in 98 and Iam fine- have had a few obstructions but no surgical intervention ever needed. GOOD LUCK!!!!!

In my experience, my final takedown was the easiest of all my ops thus far. I was home in a week, should have stayed longer. My stomach had shrunk because I was on TPN for months, so every time I ate, it would come right back up. BUT, after a few weeks, I was eating normally again, and actually pooping like I use to, rectally. I had some cramping at first, but after modifying my diet and some meds I felt terrific! Just watch your diet for the first few months to allow your pouch to heal. Have you been doing Kegle exercises? If not, start, the rectal muscles need to be retrained again. I never had any leakage, felt like I was going to, but once my muscles strengthened, I was fine. I had my j pouch for 23 years, the first 10 were perfect, sadly, I had to remove it, but don't panic, it's very rare. I had chronic pouchitis, only 1% of j pouchers get it, and even less require further surgery, lucky me! Don't be discouraged if you get pouchitis, it's usually easily corrected with antibiotics, and stops in a few days. You have much to look forward to my friend. I know it may not seem like it, but trust me, it was the best thing I ever did! All my very best for a problem free recovery, and please, keep us posted!

Cheers,
Eric

I can't thank you all enough for the responses. I just join jpouch.org and never knew what I was missing. The hardest part of living with an illiostomy for 12 yrs was the feeling of being alone in it. like no one could fully understand what I was goon through. The past 5months since my jpouch surgery have been the toughest. I feel like I lost my life. I use to workout for 1 to 2 hrs a day 5 days a week and I haven't gone back because I just haven't felt great. I have gained 25lbs and cant tollerate any veggies the stomach cramps have been so bad i have had to take adivan. A lot of my friends were workout buddies and they just don't get it. It has consumed my life and I am sick of hearing myself talking about how I don't feel good. I have been having stool come through rectaly too on top of having my bag so there are days I am in the bathroom all morning. Having people encourage me feels so good. Reading the responses I tear up. Thank you all for the kind words. I will update you on my recovery Tuesday hopefully : )

Prayers and thoughts for you today Alli.
~Tammy