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Posted 2/6/2017 11:59 AM (GMT 0)
Hi everyone

Just wondering if anyone else has issues with butt leakage?

Sometimes it's right before I poo (accompanied by the normal urgency), sometimes when I pass wind, sometimes it's just the fluid and it comes out whenever it wants which is really embarrassing because it can be enough to go through my underwear and pants. I've started wearing panty liner pads to try to prevent it getting on my clothes but it's just uncomfortable to deal with.
It's watery and most often either yellow / light brown, sometimes pink tinged.

Currently in an active flare with majority of inflammation and ulceration in the colon / rectum.

Lena

Post Edited (shake.it.cupcake) : 2/6/2017 5:02:21 AM (GMT-7)

Posted 2/6/2017 7:11 PM (GMT 0)
Yep..It's absolutely awful. It's been a few years for me now. I honestly feel like if maybe I changed my diet, maybe it would be better. I already feel so restricted though, and I'm a big foodie, so I haven't really tried yet. Just wanted you to know, you're definitely not alone. sad
Posted 2/7/2017 10:22 AM (GMT 0)
Shake.it.cupcake,

I never had a leakage issue until I first showed symptoms of Crowns. Now I have a "temp" colostomy and I still have issues. I know mine was caused by ulcers destroying tissue. It has gotten somewhat better with the colostomy.

Clo
Posted 2/7/2017 11:16 AM (GMT 0)
Wahoo217 and Clo20144, thank you for your replies.

I haven't had issues with leakage previously but I suspect that it's due to majority of the inflammation I've had before being located in the small bowel whereas this time it's mainly in the large bowel and rectum so I guess it makes sense from that perspective. When I had the colonoscopy done a month ago it showed many ulcers including a large one in the rectum so I suppose it's very much a situation like what you described Clo.

Wahoo, I'm already on a low residue / low fibre diet so I don't think there's much more I can change with my diet, although I'm open to suggestions....

I've got some hydrocortisone suppositories from the pharmacy so will give them a try over the next couple days.
My specialist also recommended an MRI to check for fistulas?? Never had one before so not sure if it's likely to be the cause....? What do you think? Am I right to think that I would be in a lot more pain if it was a fistula?


Lena
Posted 2/7/2017 11:27 AM (GMT 0)
I get leakage but not as bad as what you describe. It's more like minute amounts, which are still enough to cause severe itching in that area and drive me up the wall. What you describe sounds more like actual accidents though, if it goes through your pants and trousers. Accidents are usually a sign of rectal inflammation.

As for the infamous 'sharts', yeah, I get those: have to be very careful about passing wind.

I would have the MRI. The more info you have about your disease, the better.
Posted 2/7/2017 11:43 AM (GMT 0)
NiceCupOfTea, thank you for your reply. I initially thought that it was a case of having accidents but the fluid looks very different especially when my stools are quite formed and the fluid that leaks out is pretty much like water. It also doesn't have the same smell. In regards to the 'sharts', I do try to be careful but sometimes they sneak out!

I guess I'm just completely confused about the whole situation, hopefully once the inflammation and ulcers begin to settle then all these other things will too.

I will organise the MRI appointment asap, I agree with having all information possible.


Lena
Posted 2/7/2017 2:04 PM (GMT 0)
For me, I definitely have inflammation in the rectum. I did have an abscess as well, but after many drainage procedures, I believe that is now gone.

Do you have a lot of fat in your diet? Again, I personally haven't tried to adjust my eating habits, but I do notice some days are better than others. Definitely schedule your MRI as that'll help see what's going on!! Good luck!
Posted 2/8/2017 12:31 AM (GMT 0)
I get it sometimes. Especially after a lot of diarrhea, even though I clean up really well it seems I'll still have some oozing afterwards. Sadly usually when I'm in public and can feel the irritation start up and have to make a mad dash to the bathroom to clean up AGAIN.
Posted 2/8/2017 1:07 AM (GMT 0)
I'd recommend checking for an abscess----I had leaking and months later it ended up being a massive abscess that covered my pelvic floor---which lead to fistulas. I hate this disease!!
Posted 2/8/2017 2:01 AM (GMT 0)
I get it every now and then but it recurs when my rectum is flaring up; I just can't control things. It's exactly what you describe not an accident as I had many accidents previously. Did you see a colorectal surgeon before? When I told my CRS about this soiling, he claimed that my anal sphincter is weak. But my GI asserts that it's caused by the inflammation.
I'm with the others that you should have an MRI but it's not necessarily caused by either an abscess or a fistula. I have had soiling for years before the abscess and fistula developed.
Hope the hydrocortisone suppositories put things under control.
Posted 2/8/2017 4:01 AM (GMT 0)
Ok....lots of gross stuff so turn away if it is going to bother you.

Shake.it.cupcake,


For me...I have a rectovagina fistula. I have ulcers that have destroyed tissue in my rectum and those areas could let discharge thru. Plus with a colostomy your rectum sheds that mucus so it comes out. My surgeon said to push alittle when I go pee to try to get mine to dislodge on its own and limit my accidents. I have noticed more discharge the closer it is to my Remicade infusion because that's when my inflammation starts to get out of control.

I also advise you to call both your GI and your surgeon to see if or when you should be concerned. If you have pain you should always be concerned...or that's what my doctors told me...

Good luck and let us know how it goes.

Clo
Posted 2/21/2017 5:58 AM (GMT 0)
Hi everyone

Thank you again for all your replies, information and help.

Just a bit of an update..... I had the MRI last week and received the results today.... I have a fistula! So according to the IBD nurse, this is what would be causing the pain in the rectal area and also the discharge leaking out my butt.
Seeing my specialist next week to start the paperwork for Humira and will go from there. Still on prednisolone and azathioprine for now as well though.



Lena
Posted 2/21/2017 7:14 AM (GMT 0)
Any chance you can start on Remicade instead of Humira? Humira isn't a bad choice, but Remicade might be the best choice for someone with a fistula. There's never been a head-to-head study comparing the two against each other, but Remicade has a somewhat better track record and a somewhat better reputation for those with a fistula. It could be that by being infused into the bloodstream, more of the medicine gets to where it needs to go.

If you have no choice but to try Humira first, I'm not saying it's a bad choice at all. Just that Remicade might be a slightly better option to try first.
Posted 2/22/2017 3:20 AM (GMT 0)
I have been on Remicade since I first developed a fistula. It has been one year and eight months... I still have the fistula plus a few more. It keeps some of my other symptoms somewhat in control it just hasn't stopped the fistulas from forming. Now some of the fistulas have formed and then healed....and then reformed...

So I dunno..everyone is different and responds differently.

I hope you find success with the humira. Please keep us informed.

Clo
Posted 2/23/2017 1:15 PM (GMT 0)
I have the option of Remicade or Humira, my specialist said either was fine to go with. I chose Humira as I feel it will be easier to fit it in with 'life' as I can self administer rather than having to go to the hospital for an infusion which would require a day off from work, limitations with travelling, etc.
I guess it will just be a matter of trying it and see how it goes...??


Lena
Posted 2/24/2017 3:59 AM (GMT 0)
Lena,

I have heard wonderful things about Humira. I initially wanted to try it but I have this little issue....whenever I see or think a needle is going in me I end up on the floor. Lol...so my doctor didn't want to chance me starting it and not being able to self administrator the medication. I have a port for my infusions and I still almost faint when we start it. I have to be laying down flat because the whole world feels like it turns upside down and I get dizzy, start sweating and can't breath. Once it is in I am ok but someone else has to actually do the deed.
I know wimpy wimpy wimpy...

I have a friend that has been on Humira for a long long time. She is doing so much better than when she was on Remicade and she loves the way she can give herself the shots.

So everyone is different. I bet you will be fine.

Clo
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