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Hello All,

I had a total colectomy back in December as the "cure" for my UC. May 1st I had the J pouch created. My take down surgery is scheduled for next Monday the 26th of June. 

My questions are:

As soon as I woke up from the J pouch creation surgery, the majority of my pain stemmed from a extremely sharp shooting pain in the left side of my groin. It hurt so bad for about a week, during that time it was almost impossible for me to stand up without help. 
Eventually the pain go more bearable, but at almost two months out and the area will still hurt in certain positions, like getting out of a car. Its manageable, and my doctors don's seem to think its important. However, I find it to be pretty annoying.. Has anyone else experienced this? and did your pain end up going away on its own? 

Second question,
About a week after take down the mucus that the pouch creates started to be a bit bloody... nothing like the bleeding I experienced when I still had my colon, but enough to still seem like a concern. My surgeon said that can also be a normal occurrence. Did any of you experience bleeding during step two?

Third question,
The dreaded butt burn.. Obviously, I have not had my take down yet, so I do not have experience with this issue. Is this something that everyone with a J pouch experiences? and does it eventually go away, or is it more of a chronic life long nuisance?

 

Overall, I am extremely happy so far with how things have gone. After the emergency surgery in December I was able to go back to work three weeks after surgery. I was expecting to be off work 6 to 8 weeks for the J pouch creation and was feeling good enough to go back to work in just two weeks. 

Moving forward, I am hoping that the small issues that I am having clear themselves up, and the take down goes just as smooth. 

Thank you in advance for your help!  

 

 

 

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For just the butt burn question: For most people it clears up during the first year. It's best prevented by a barrier cream after each BM (in preparation for the next one). It just never gave me a problem. I think some folks have other issues that may also cause burning pain (e.g. Cuffitis), and that gets mixed in with garden-variety butt burn.

Question 1:

No,  I never experienced shooting pain in my groin area, I never experienced any pain whatsoever from the surgery,

I didn't even use the pain meds which were on some kind of push button pump.

Question 2:

During the first week of my J pouch creation I had a blood drain in my abdomen, but I never looked at its output;  I had open abdomen surgery, so my movement and mobility was restricted.

The mucus output from the J pouch seemed as if it was never ending.

Initially, so I've been told, there was traces of very dark old blood, which is normal but by time I was able to see the mucus output myself, there was never any traces of blood whatsoever.

10 days since my J pouch surgery, the mucus incontinence had stopped and I was able to evacuate the mucus like I would a BM; there was a few mucus accidents during my sleep, although I wore diaper/nappy type boxer shorts during my sleep for maybe 3 months.

Question 3:

I've never experienced butt burn.

Just after takedown, for maybe 2 days, I did experience an excruciating pain during BMs, which was initially diagnosed as butt burn but it turned out to be anal fissures, caused during dilation of the anal canal.

The nearest I've experienced and I assume on par with butt burn, was the erosion and burning of my skin around my Temp Loop Ileostomy.

I eventually discovered a product called ilex Protectant Paste, which provided instant cooling releif and made all the difference, healed the festering and oozing skin within 3 days.

The ilex paste can also be used to treat and prevent butt burn.

I continued to apply the ilex paste all around my Stoma, as a preventative measure.

I always say, "it's best to have ilex paste and not need it, than need it and not have it."

Last edited by Former Member

I did have that excruating pain and it did eventually get better but it was tough and seemed to be much worse at night.  

Butt burn is irritating but manageable.  Get some ilex skin paste, it is amazing!  I am just about  4 months since take down and the butt burn is far and few.  

Good luck to you on your take down, this next surgery is a breeze in comparison .

I'd chat to your medical team about the first two questions. I expect the mucus varies from person to person - I was told to expect it but didn't really get any. However I can imagine the opposite is true from some people.

I'd never heard of butt-burn until I found this site, years after getting my pouch. If my skin got a bit raw from going to the loo a lot, I just rubbed any cream on it, and that did the trick.

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