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8 replies

takedown troubles

Marianne77Marianne77Member
Hello everyone,

I'm newly registered to this site, although I have been reading the discussions for a few years. I need a little encouragement regarding jpouch takedown recovery. I had a 2 step surgery, 1st on May 11 and takedown on July 15th. My surgery on July 15th was uneventful in the beginning and I was out of the hospital in three days. I ended up going back the next day due to an ileus. I could not stop throwing up. I had an NG tube for 4 days (HORRIBLE)and was sent home again on July 23rd. I assumed this surgery was not going to be as hard as the first(WRONG Frowner) . Since I have been home I have been going to the bathroom 20+ times a days, major hemorrhoids, butt burn, gas, and spasms. The gas and leakage has improved but it is so painful to go the bathroom. I had cuffitus and am taking canasa for that. It seems to be clearing up but I didn't use my suppository last night because it is SO painful in that area. Tomorrow will be 2 weeks since takedown. I'm beginning to regret the surgery, even miss my ileostomy a little. At least I had a life with that. When will it get better??

Marianne
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skn69skn69Member
Yes!
It does get better but your poor tortured body needs time to adapt to its new plumbibg...it is slow and incremental improvements and not some overnight "Tada!" moment...your best friend right now is a bidet or sitz bath or hand held shower knozle that you can use to spray clean your backside so that not a drop of bacteria remains to haunt your every movement...butt burn is the enemy and you need to fight it on every front...creams, warm water, aloe vera gel with lydocaine cools things down nicely and is really easy to find and cheap (look in the suntan section of your local pharmacy)...
The others will give you more advice about stool thickeners and other meds but for now I wish you lots of luck and a speedy readaptation to your new plumbing.
Sharon
mgmt10mgmt10Member
The first month is the toughest. It will get better. I hear many people say around the 6 week mark is where they notice the most improvement. I know it's hard but hang in there. When you are in the thick of it, it all seems like it will never end but it will! I remember that feeling from when I had my first step....I had complications after that one. I thought it would never end. But it did and it was smooth sailing after that.
BebeksporBebeksporMember
I wasn't ready for the recovery, I also thought it would be easier. Yes, recovery from the surgery itself was easier, but I wasn't prepared for the horrible butt burn, itching, internal itching, pelvic floor pain, going 20+ times a day and 5 at night, incontinence and urgency. Some lucky ones have none if those problems!
There were times in the first few weeks where I missed the bag. The recovery can really suck. Some tips - use baby wipes or get a bidet (coco bidet changed my life), don't use cottonelle wipes or toilet paper. Pat the area, don't wipe. Pat dry, air dry, or use a hair dryer on the cool setting. My bidet has an air dryer, it's amazing. Try different barrier creams, like convatec aloe vesta.
For gas, I have the best luck expelling it when I lie on my stomach or back.
Good luck to you!
Katie
P phonix2gMember
I'm pretty sure all of us had those regrets at the two week mark. I know I did even long after that. The butt burn is awful. Load up on baby wipes and calmoseptine. Watch what you eat right now to avoid the burn like fruits and citrus or pasta sauce and obviously hot sauce. I experienced everything that I heard was horrible on this site but there were also vets when I was at your stage that told me to hang in there and here I am now almost a year and a half later and those symptoms are far gone. Everyday still has it's own little struggles but I can go out and live my life the way I want to now with very little restrictions. I promise you are going to play the tug of war game in your head between your positive and negative feelings about your decision but in due time your feelings should shift more positive as you experience less bad days and more good. I'm sure there was a good reason why the surgery was done things couldn't have been that great before so I think you made the right decision. Good Luck.
Marianne77Marianne77Member
Thanks for your encouragement. Life was getting pretty difficult with UC, and missing 25+ days of work this past year was the main reason for the surgery. I am a kindergarten teacher and I was getting to the point where I would call in sick at least once a week and spend most of my morning in the bathroom.

I haven't purchased a bidet yet, but I have a squirt bottle I have been using instead of wiping. I also take 3 sitz baths a day in Epson salt. I haven't been able to get out to get some of the cream you've suggested (I'm still a little afraid to leave the house). Right now I'm using Desitin and prep H.
MicheladelfinaTXMicheladelfinaTXMember
It does get better, and it's so frustrating to hear that it will take time, but it does. I had my first takedown in June of 2007 and was disappointed for months, thinking I had made the wrong decision. Due to fistulas and other complications I had to have another temporary ileo placed and had my second takedown in June 2008; even now I notice improvements year to year. Keep in mind, the human body wasn't designed to work this way, so it will take your system time to adapt. Over time, your small intestine will "learn" to absorb some of the water that your large intestine did, and you will be able to use your pelvic muscles to better control how often you go. In the immediate interim, make use of sitz baths, calmoseptine, Ilex and trying a bland diet for a while to give yourself a break. You can see from my surgical history that I didn't exactly have a normal process with this, but still I don't regret it at all. Have faith!!!!! Smiler

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