What does it feel like after takedown? As in, pain (incision, anywhere else), the pouch filling, knowing when to empty it, that kind of thing?

Thanks for sharing! (My takedown is this Monday, June 16.)

You'll know when to empty. You get the same urge to go. But the control is good - at least for me it is. Much better than when I had UC at the end when my continence was very shaky.

There is a strange feeling in the area where the ileostomy was. My wound was allowed to heal by granulation rather than stitched. My surgeons believed strongly the risk of infection is much greater if they stitch the wound where the stoma is then if healing is allowed by granulation. They told me I could always go for cosmetic surgery later on. I never did, but for a long time, that area felt funny. Now it feels normal.

Pain is much worse stage 1.

It's been a long time since you had step one. It will be weird to go to the bathroom the normal way again, weird but not painful. I remember being afraid I'd hurt something. I had a tough time with both surgeries. I thought everything would be back to normal. Hooking back up seemed pretty simple. My surgery was on a Tuesday, I rememeber asking my surgeon if I was going to be able to go to my fiance's Christmas party the following Saturday. He looked at like I was nuts. I ended up being in the hospital until Sunday, so I missed the party anyway. Even if I was out, no way could I have Christmas partied! It just depends how well you do with surgeries. Some people bounce right through takedown. I wasn't so lucky. But I have problems with all surgeries. But good luck to you!

I don't have any answers for you, unfortunately, because I am awaiting my takedown (July 9). I do have a question, however... For the takedown, where do they go in? I thought I heard they go in through the stoma, but a nurse at my moms work (very knowledgable) said she thought they went in through the big incision. Also, what if the area around the stoma is irritated? It doesn't look like my irritation is going away soon (red about a half inch around the stoma).

Anyway, sorry to invade the topic

Oh and I just noticed, Cataja, tomorrow is your two year anniversary on this site

My surgeon is going in at the stoma site. Going to cut out the part of the ileum that was used to make the stoma, suture the detached ends of the ileum back together, pop it all back into my abdomen, and suture the incision that he made around the stoma.

There may be other approaches, but that's what he plans to do.

Good luck on July 9, and happy anniversaty to Cataja!

Hi Rudolph -

For me, takedown was a breeze; when I woke up, I had very minimal pain. My first bowel movement was at 7:30 p.m. on Tuesday (my surgery was at 3 p.m. Monday) so just a little over 24 hours later. I just "knew" I had to go. Just like in the old days. You'll just know.

In the few days after, I got really bloated, but every day, it went down more and more until it was gone - probably about a week. My first bowel movements were probably every two to three hours, but there was NO urgency. Now, I'm about every 5 to 6 hours - longest stretch yet has been 10 hours.

Good luck!

TD was a breeze for me too. Operated Tuesday am, home Thursday mid-day and feeling great! BMs were acidic, so I'd advise you to smear barrier cream on your butt like you would with a baby. It'll protect your skin which can otherwise get really raw. Gas etc. got much better as the days and weeks went by. They went in through my stoma site and closed it through granulation rather than stitching. I corrected the scar and the fallout after a rough step 1 thanks to a great plastic surgeon. (That was a year after TD.) The feeling of needing to go to the loo are like normal BM feelings before surgery. I'd say that the really alien feeling is the one of gas in the pouch which always makes me feel like I have a period coming on or I have a urinary infection. That heavy, tugging feeling. I've learned not to panic when I feel it! Good luck

Great information from everyone here thanks

I was curious, Lisa - when you're talking about hours between BMs, what about at night? Like should I expect to have to get up 3-4 times a night at first and then less as it goes on? At the time, with the bag, I have to empty it once, twice once in a while over night. Thanks

Re: overnight...

With my bag, I had to empty at least twice a night on a good night, more on a bad night.

Since takedown, I have yet to make it the entire night, but I would say that I on average, only get up once a night (usually, if I go to bed around 11 p.m. I'll be up at 4 a.m. to use the bathroom); there have been times when I was up more than that, but those are very rare and often related to what I eat.

My schedule, because, what the heck, I'll share way too much information:

4 a.m. - "first" bowel movement of the day
8 a.m. - second trip - right before I go to work
1 p.m. - third trip - usually right after lunch
6 p.m. - fourth trip - when I get home from work
10 p.m. - fifth trip - right before bed time

I have tried to get my body on a "schedule" but if there's not time to go, then I don't go. Since there's no urgency, it's not a big deal to go longer in between.

When I was on a cruise, I wore the patch behind my ear that helps with motion sickness and it has an anti-spasmatic in it...needless to say, I would only go twice in a 24 hour period. It was great.

Thanks Sounds about the same as my bag emptying schedule right now. I'm curious, after takedown, how long do you spend in the bathroom? Like is it just quick/comes right out or does it take a little while?

Well, everyone is different. For me, I am in there two minutes tops. Before surgery, I was a fast pooper, and after surgery, I am a fast pooper. I don't have to strain - it just comes out and I'm done.

The only bad part is the gas. I can never be "quiet" in the bathroom, and for ladies, well, it's just one of those things we try to keep the mystic about, but I will still insist it always smells like roses.

My takedown was fine... partly I think because my doc kept me in the hospital for five days, which kept me on a restricted diet with only liquids until the 5th day. I may have eaten more sooner and had problems as some do on this site if I was in and out. After they saw I processed the hamburger through OK I was discharged.

She went in through my stoma site. She described it as "dunking it back in", stitching it up, for a total surgery of 45 minutes. I could have been back at work at three weeks but returned at four. I did seek relief with chewable gas-x that first week or so home. You might want to keep some around just in case you get swollen from trapped gas in your belly.

This message has been edited. Last edited by: arizonafour,

I chose to keep my ileostomy for a full year. My takedown was performed the same way yours will be (tomorrow!). I had no pain and I felt absolutely great! Needing to use the bathroom to have a bowel movement felt very strange for quite some time. In fact, I had trouble relaxing my anal sphincter for awhile. It took spraying warm water up my "bum" to get me to relax and let the stool out! The signals for needing to use the bathroom can seem strange at first. Is it gas or stool? Don't take a chance! Just use the bathroom. The nicest part of all this is the lack of urgency. I decide when to empty my pouch! It does not control me! This took awhile to understand. Just take time getting familiar with your new indoor plumbing and the signals it is sending your way. Best wishes!

Thanks to you all for your wonderful, informative, positive replies! I'm looking forward to reporting back that all went well. I'll post as soon as I can.

I'm guessing you have some output right now- sort of like using the bathroom but it is just a bunch of slimy stuff? Most people have that with the loop illeostomy.

It feels a lot like that. For me, I feel like something is leaning against my anus. Like it is ready to push out. Then, I usually use the restroom. Not too bad. Certainly better than the bag, once you get used to it.

I had a rough take down. My advice to anyone is stay on liquids one day after you feel ready. I moved to solid food WAY too fast and oh my mercy, was I in a world of pain. It was terrible! But it got better after a while, and eventually I returned to real food again. So far, so good!

Another thing: pack a whole package of overnight feminine pads when you go. You will have a few leaks in the beginning. That was a huge lifesaver for me. That and Charmin TP from home.

As for the stoma site, I haven't felt mine much. It just feels strange because the bag is gone. I think the wound is too deep to feel it. It heals quickly though. Mine is three weeks post op, open healing from the bottom up, and the scab already fell off. (Gross, I know.) Oh and all the skin where my flange was stuck to all that time peeled like I had a sunburn- it was interesting!

Good luck! And once it heals, you will feel great