Chris-
You sound much smarter than your surgeon. If this is indeed pus it must (IMO) be resolved before you allow your pouch to be hooked up. The normal mucus discharge can leak and cause urgency, too, and is unfamiliar stuff. Step one is to make sure this is pus rather than normal pouch discharge. Step two (if it's pus) is to find the source and deal with it appropriately. You're not likely to get a good result from hooking up an infected pouch.

I agree with Scott! Run! to another doctor immediately. I think your GP or a general surgeon, any doctor really. Plus I think you really need to find a better C/R surgeon, that is not in the same group as your current Surgeon, to consult with and possible have take over your surgeries. You could have an abscess or any number of problems.

I had an abscess grow under my incision in-between surgery one and two and I didn't have a fever. I had drainage, that my surgeon thought was "normal" during the 8 weeks between surgeries. During take down he investigated and I ended up with a huge, well it looked huge to me (1.25" W x 2" L x 2" D), hole in my abdomen after surgery. I was lucky the abscess was right under the incision and not internal. It healed open, which means I had to dress it twice a day with gauze until it healed.

I am not a medical professional but based on my own limited experience above say no to your surgery now. Your potential problem sounds worse as it's internal!

I'll respectfully disagree with the other two responses. I had quite a bit of watery discharge from my j-pouch every day before takedown, 80 mL sounds like a typical amount from my experience. It is normal to need to expel this a few times per day, and this discharge is usually more urgent than actual stool because it is much thinner and more slippery. It is not uncommon to even have incontinence before takedown with this discharge that disappears once the fecal stream is restored.

Absent other signs of infection I don't think this is anything to worry about -- you're obviously and understandably on edge because of your experience with an infection in the hospital, but discharge from the healing pouch is 100% normal. If you had pain or fever that would be a different story.

If you are still concerned, I would ask your surgeon if there is anything else that can be done before takedown to confirm that there isn't an infection in the pouch anymore. For example, perhaps infection or a possible abscess could be visualized during the pouchogram (contrast x-ray) that will be required anyway. A simple blood count could also be used to check for elevated WBCs, another sign of infection.

I'm not in disagreement with Liz at all. A discharge is normal. I'm pretty sure it's not supposed to be pus, though. The key is to figure out whether it's a normal or abnormal discharge. The normal discharge isn't the sort of stuff we typically run into, so it might be called pus even if it's not.

This may be one of those instances where a stated description may not be 100% accurate. You can have a mucousy discharge that appears pus-like, without it being pus. If there are no signs of infection, like fever, elevated white blood cell count, pain, swelling, etc., it seems reasonable to take a watchful waiting approach. With your past history, it makes sense that you are a bit wary.

I am not sure that getting other opinions would help. But, that said, if you are really worried, you need to keep checking back with your surgeon if things get worse or do not improve in a reasonable time.

Jan

Thanks for all your replies and opinions. Having listened to everyones experiences and advice, I think the route I will go down is to further discuss this issue with my district nurse. She probably has more fist hand exprience of this sort of thing than my doctor does as she visits people at home, and those who are having problems, whereas my doctor is more likely to just be behind his desk talking to people in his consulting room.

I take into account that it might be an idea to get a second opinion from another doctor, but being in the UK i'm not sure how easy that actaully is as this is provided by the NHS, so its a bit of a case of 'you get what your given'. I will explore this option if the nurse's opinion is that it may be an infection though.

Perhaps this is a case of me panicking over nothing, but these things tend to play on your mind in this situation. Either way I won't continue to the next stage of my operations until i'm satisified that there's nothing untoward going on.

I'll keep you posted.

Chris

That sounds like a perfect idea! Sometimes if you are worried, it helps to have someone who has some real world experience put some "eyes on" rather than speculate. She can evaluate you appropriately and decide what should be the next step, if it goes beyond watchful waiting. She could also order screening labs for infection, without it becoming a big ordeal.

I know it is easy for us to say, "get a second opinion," but sometimes that is not as available as we would like (even in the US that can be true). But, that does not mean you need to have your worries go unanswered.

Oh, I don't know if it was mentioned to you before, but even if you have a diverting ileostomy, some stool can bypass and make for some smelly mucous discharge at the other end. So do not assume all your output should be like clear spit!

Jan

I've had both. In my case there was quite a bit of "visual" difference between mucous output and pus from abscesses. Mucousy output was thinner and clearer, but kind of white. Pus was thicker, yellowish, and greenish. Also, the pus from abscess had a distinct awful odor. Best and quickest thing is probably to get a general blood test to check for WBC. Also you may or may not have a fever from an infection, so don't go by that alone. I have never had a fever from various abscesses.

good luck.

I'm glad you are getting it checked out and think you've found the perfect person. She can have it checked. I repeat, "I had no fever", I had a white discharge that I did not think was normal, it did not smell.

This is why I think anyone having question about a discharge should be satisfied as to what it is and by a medical professional. Not every infection causes a fever, it is hard to describe discharges, as it's hard to describe a pain and on and on. Sometimes we can help those asking questions. When it comes to having surgery I prefer to be cautious. We all want to be confident in our surgeon and this surgeon admitted he didn't know what the discharge meant but was going to proceed with take down surgery anyway!

As promised, I thought i'd give an update on this just in case anyone else is in a similar situation with excess fluid/mucous discharge before their takedown. Can't believe it's been a year since i posted this (time flies when you're having errr fun?).

It seems I was worrying over nothing really. I spoke to my specialist nurse about the excess mucous discharge, we kept an eye on it, and was told it was slightly unusual, but hopefully nothing to be too wary of.
Anyway, had my takedown in May 2013 (I delayed for about 6-8 weeks due to work commitments).

After a difficult early few months, including I must admit, a few teary nights (I'm a 34 year old male!), I'm making fairly good progress. The early problems turned out to be a mild case of pouchitis, and Cuffitis. This was basically sorted with a two week dose of Cypro.

Still occasionally have some issues with Cuffitis when my output gets on the loose side, which feels like what most people describe as "butt-burn", but in my case is inside my anal canal. This can cause soreness and an itching that only a finger up there can sooth - Don't do this, it makes it worse, it's like scratching at eczema!
This is still being treated with steroid suppositories, but i must admit i'm my own worst enemy as I can't really take these when I've got a work day as they make me need the toilet more during the night and early morning.

I'm back at work full time now, which for me involves commuting on a busy train for 1.5hrs every day to central London (UK). So i'm getting up at 6am, getting a train around 7am and getting home around 18.40pm. It's a long day, but my point being that I'm able to manage this pretty much all the time. Fortunately I do have the option for work from home if i'm having a bad day, but it's been a while since I've needed to do so.

I'm still having a few issues putting on weight, but this is probably partly to do with sticking to the same diet while i'm out at work. I'm still a bit cautious about rocking the boat by trying new things.

Sorry this is a bit of a long post, and slightly irrelevant to the original title, but hope it helps if anyone is searching for the original subject matter.

Thanks again for the support and advice when i needed it last year.

It was wonderful hearing from you! Your account of how things are going will give much strength to others facing similar challenges. Thank you for keeping us up to date and continued good wishes!