Hi. You may have seen my previous posts. I so appreciate this site. It's helped me a lot to read what many of you have gone thru-& learned along the way...
I will be seeing my surgeon this Tuesday & we will be discussing a takedown date ....
Here is my concern: Since my surgery in July (loop ileostomy & j pouch formation) I have had constant leaking from my rectum on a frequent (hourly!) basis. I have never been able to stop wearing pads that I change frequently. I am concerned that when I get the takedown this problem will only be a
exacerbated- only now with stool!!!! Has this happened to anyone else?? Did it improve after takedown?
I am wondering if I could have sacral nerve damage because I also get slit of unexplained pain ...can I test for this before takedown?
Also- did anyone have rectal and back pain (internal rectal pain)greater than 2 months. I am going on 3 months of it. Will it ever go away? I just need some vision here....
Original Post
This is my experience.
I had my initial surgery October 13 13
I was pretty well in and out of the hospital until the end of December. More in than out. I had two more surgeries. The second surgery they figured they may as well do the takedown... That was only after a month of having the ileostomy. So I was forced to use my pouch after only a month of healing. I had another surgery four days later for bleeding in my abdomen. I wanted to just die after that. Thank goodness I didn't. I lost 50 pounds in the process. I only started at 176. My normal weight. I have always been skinny. But losing 50 was too much.
Anyways. I leaked and pooped and leaked and pooped myself for months and thought it would never end. Never.
On top of that I was in extreme pain all the time. And to top that off I would go to bed and that resting would put my whole body in such pain I could not even lay there. I never got more than two to three hours of sleep for months. I had to get up for that or pooping myself. The pain lasted for months... I never ever thought I would get better. But slowly... Very very slowly I improved. I didn't even know or feel like I was improving... It was at a snails pace and the improvements were in such small increments it was not noticeable until I thought to myself that I am not having this or that anymore.
Well... It's been almost a year and I still have problems but they are no where near what they were. And I am happy with that because I know now that as time goes by I will get even better.
I don't know what else to say. It seems it took forever and time went by so slow and the pain... Pooping leaking and all that would never stop. But it has slowed to a very manageable pace. I still leak but it's only because of certain foods I eat. Trial and error on that. And like I said I still see improvements and I know it will get better.
I am so sorry you are in that position I was in... You sound just like what I went through.
The back pain.... Excruciating.... I don't even know where that came from. I have never had back problems. I am 58 by the way.
I feel for you but I cannot say it will get better... I can only say what I went thru. It was tough. And it sounds like what you are going thru is the same.
But be strong knowing that it will get better. I would only hope for the best for you.
I want to reach out to you but this is the only way I can.
Maybe knowing that someone was at there wits end and made it will help. I only hope it will.
My best to you.
Be strong.
Patience. That's the hard part cause you see no end to it.
I didn't.
But it does end.
Richard.
Hi! I had rectal cancer and FAP so total colectomy with rectum removed temp ileo and then takedown. tie been about 9 months since takedown and I think because of the radiation it has damaged my sphincter severely as well as here is only so little left that I am struggling with incontinence. I have severe skin breakdown due to it and am in pain ALL he time. I don't work on social security disability. I'm giving it until the end if the year to give time to heal but am thinking I will have to go back to the bag due to quality of life. I have become a hermit since takedown and am miserable, I want my life back. No havin an Ostomy is not all fun but I was able to function A LOT better with it. I know everyone's story is different and bodies are different. I am telling you this not to scare you but to say yes it is a possibility you will continue to leak afterwards. I wish someone talk to me who was in a similar situation. I am glad that if things don't work out that I did at least try life with a jpouch. So I would say talk to your surgeon/GI at length about this and maybe still give it a shot? I am 28 yrs old btw and still hope I have a lot more life to live with or without the bag.
Mary, you might want to ask your surgeon about testing your anal sphincter strength. Yours is most likely fine - many folks report a discharge they can't control, and then go on to have well-bahaved pouches after takedown. If the test is normal it could help reassure you, and if it's abnormal then the information can help guide you and your doctors. Just let him know you can't stop worrying about this.
I had a lot of mucous leakage with the temp ostomy. It was only at night while sleeping. I also passed mucous rectally a few times or more a day which was controlled and is very typical. The night fluid leakage and tailbobe pain concerned me. My surgeon started me on augmentin while I had the temp ostomy as he thought it was pouchitis. Well almost four years later and I am still on one antibiotic or another for pouchitis , but mine is more mechanically/ surgically related due to a recurring stricture at the anastomoses site.

I can say though that I rarely experience any leakage...never during the day and sometimes at night before I swap antibiotics.
This may likely not be your experience. After takedown things may easily current themselves but testing the sphincter may be a good option before then.
I had the discharge with my ostomies, too, but it wasn't as bad after takedown. The first few months will likely be rough and frustrating, but be patient with your body as it learns how to handle food again. In the early days, having half a banana and some peanut butter before bed helped me from getting up a lot, and I slept with a leak pad under me in case of accidents (just like the kind they have in the hospital). As the months go by and you learn to train your muscles more, it will improve. Just be patient and easy on yourself. It's a big adjustment, but well worth it.
Mary,
I think it would be great to do a sphincter test so you will know what's ahead, and hopefully be reassured. My take down was in March. I had leakage the whole time with loop ileostomy, though it was lots of mucous, bile and stool. I, too, was worried that I would leak after takedown, but my surgeon assured me that it would not. Digital exam showed him that my muscle was tight enough. Sure enough, I am continent, even when my output is all liquid! That said, it was a process, not immediate after takedown. I have worked with my nurse to tweak meds (Imodium and Lomotil to slow things, Colestipol to help with acidy output, Metamucil). I am just recovering from a month long bout of cuffitis, during which time I did have some leakage. I do always tuck 2 squares TP, trifolded, up there or Target's oval cosmetic pads, about 2.5"round. This makes me feel more confident and only occasionally do I have enough leakage to soil the mini pads I always wesr. I use Calmoseotine or Vaseline to keep area protected for next BM, so TP/ cosmetic pad keeps that from making mess. A warning though, nighttime is still a challenge, so I set alarm for every 2.5-3.5 hours so I get up and empty. I sometimes wake up to go, but when I'm in deep sleep in early morning hours I do not wake up. Emptying part way through night has helped me avoid soiling myself at night. I hope your road after takedown is smooth, but even with all the challenges I have no regrets and have had so many more good days than bad. Positive vibes your way! I know everyone on this site will continue to help you through this process!
Laurie

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