Stoma questions

I'm nearly 8 weeks out from permanent ileostomy surgery and about 4 weeks ago I noticed some pus oozing from a site at mucocutaneous junction. It was mentioned to the surgeon at the time but he wasn't concerned. Two weeks later, pus could be seen at another mucocutaneous junction site and I had stinging pain even when the stoma moved when active. On this occasion, the surgeon prescribed a course of antibiotics which improved the stinging pain. However I still notice pus.

There is no apparent separation of the mucocutaneous junction.

I'm wondering if anyone has experienced pus at the mucocutaneous junction and what was its cause?

My other question relates to the effect of sneezing and coughing. I've recently had a cold and, of course, had some sneezing and coughing. It wasn't prolonged episodes but probably 30 or so coughs during the week.

I tried to place my hand on the stoma when I coughed but most of the time it wasn't possible - coughing is a spontaneous act and often the cough was over by the time my hand reached the stoma!

Any information about hernia mentions coughing and sneezing as risk factors.

Is there any rhyme or reason to the relationship between coughing and ileostomy hernias ..... or is it a case that one person could have a mild cough and end up with a hernia while another could have a lifetime of colds without herniation?

I had a parastomal hernia and I honestly have no idea why. It's a scary risk that can happen no matter what you do. In hindsight I can come up with a bunch of possible things I might have done, but my surgeon and nurse have been pretty clear that it's more important to just live my life and not blame myself because it's just not always clear, much as I'd like to have cause and effect.

It's definitely part of adjusting to having an ostomy to worry ... probably even healthy.... but as you said, no one can hold their stoma before every cough. So good that you tried. When you start being able to exercise more and such, it's good to learn about risks from lifting and movement, as you can have some control over those (consider getting a support belt if warranted).

The other risk factors are being overweight (more pressure on the abdomen) and smoking.... for some it's a challenge to try to minimize them (I was always reassured because my weight was pretty good and I don't smoke, but again, I got a hernia anyway....)

That totally makes sense and I understand. I used to feel like that somewhat and once I got back to my regular exercise routines and back to work those thoughts faded for me!

Once I got back to normal life the stoma became a second thought not my first thought.

Thanks cupcakes.

Perhaps I am being unrealistic or naive at two months post-surgery, but I sometimes wonder if the stoma will ever be a second thought of will it always be a case of seemingly endless concerns.

I have no idea what to expect at two months after surgery. When I walk I have a sensation like the bag is pulling but that is not the most accurate description ..... the bag isn't actually pulling of course and it occurs when the bag is even empty. I'm not sure if this is because the muscles are still mending or perhaps the problem that causes the pus is part of the reason (if I press the area near the pus it is tender and a stinging pain).

To add to the uncertainty, I had a CT scan last week and it showed what the surgeon described as air/gas in a muscle near the stoma. The muscle apparently looked a bit inflamed and the air/gas indicates infection .... but I don't really understand the infection part because the surgeon said there was no pocket of pus. He also thinks the pus/stinging is associated with the air/gas in the muscle - but he has never seen this in his career. If the antibiotics don't work - and they look like they aren't - then he suggested a surgical procedure to lance the air/gas out of the muscle.

But perhaps the pus and stinging are separate issues and this air/gas on the scan isn't causing any symptoms! Perhaps the air/gas is why I "feel" the bag when I walk. Perhaps even this minor surgery he suggests will solve one problem and create another!!

I guess the generous leave I have from work is a strength and a weakness .... it gives me time to heal but it gives me lots of time to think about the stoma. And the stoma is like the share market from day to day .... ups and downs. Yesterday it felt rather sore around the stoma, which I assumed was related to some coughing the previous few days. Today feels better and I move more freely.

The time to recover is interesting. My surgeon earmarked six weeks as the point when things settle down. But, as you say, 6-12 months is more realistic and if we are to be fair to ourselves then two years would not be unreasonable.

A matter of two months can make a huge difference .... two months ago today I was going to hospital for surgery. I came out of hospital looking like a prisoner of war .... I went into surgery 20kg lighter than normal and lost more weight in hospital due to the stoma not being active early on and no food for 9 days. Eight weeks later, I've recovered some weight and look healthier.

I use Hollister New Image mini appliances. The wafer is thin line a bandage and the bag itself is small ... I tried the larger bag but no matter what clothes I wore it always hung too low. Must be made for giraffes!! One time I was at the supermarket, walking the aisles in the belief the bag was discreetly hiding under my clothes. Then I noticed the bottom flaps were showing .... my partner pointed out that people probably thought it was the bottom of a work ID card!

The pus is a mystery .... there's no abscess showing on the CT scan and I have no systemic symptoms like fever, so the infection can't be too bad. I seem to think it must be localized ... perhaps infected sutures at the site. Perhaps I'm prone to that as the sutures begin to break down .... Three weeks ago, the laparoscopic incision site at the belly button became infected and needed needle draining - OUCH!! That was apparently an infected suture.

I'm not inclined to have surgery to release the gas/air that showed on the scan, especially if there's no certainty it is the cause of the pus. Operating on the muscle will surely lead to muscle pain - something I don't have now. If the stinging pain doesn't return, I'm thinking about watchful surveillance of the pus to see if my body will resolve the problem itself without any surgical intervention.

Can I ask what sort of work you do?

I am a university academic and have sometimes wondered what it will be like to stand in front of a class with a hidden bag. The balloon scenario and watery output filling the bag mid-way through a lecture has crossed my mind.

I don't teach again until March next year, so hopefully by then I feel more comfortable with things.

Notsosick, thanks for your reply.
I'm not sure wearing a dress would be a good idea .... I'm male and cross dressing might raise more eyebrows of students than a progressively ballooning pouch under my shirt!

Hi GC4249,

I'm a university academic as well. I had my colectomy in June, after we had finished teaching for the year so I haven't lectured with a bag (and I don't expect to as I'm having my j-pouch surgery next month) - but I honestly don't think any of my students would ever be aware of the bag. I found lecturing with ulcerative colitis really stressful though - at my uni we teach in 50 minute blocks, with 10 minutes break between classes.

Trying to make sure I didn't think I would have a bowel movement during class time was not fun. Amazingly, despite how bad my UC was in the 18 months prior to surgery, I only had to excuse myself from one seminar. But to do that I had to eat very little the day before a lecture, etc., which meant I felt hungry as well as stressed during the lecture. It was hard to engage in fairly complicated discussions in that setting. Chairing meetings when it would have been impossible to excuse myself discretely was a total nightmare. Trying to make sure my bowel was empty before my morning commute (which involves dropping my son off for his school bus), having to get off busses to use toilets in cafés, and trying not to be late for my own 9am lectures was awful.

My work life is so much better with an ileostomy!

I've been to lots of work meetings with the bag and while most of my colleagues know I had surgery, few of them know I have an ileostomy - and they would never find out if I didn't tell them. I've also had lots of supervision meetings with my PhD students post-surgery. As we work closely, they all knew I had bad UC and were kind and sympathetic, but it was still professionally embarrassing to have to run to the bathroom a lot during one-on-one supervision meetings. At the last of those meetings pre-surgery, I had to run to the bathroom four times in twenty minutes. I'd return looking and feeling totally exhausted, and have to pick up the discussion of the student's research... I'm glad those days are in the past.

It is so liberating to say, 'yes, I will come and give a paper at your conference next year' without all the old issues of whether I'd be in remission, whether I'd be on prednisolone at the time, etc. I've just agreed a contract for a book I've wanted to write for ages, but that I just couldn't get to work on before due to UC. I'm sure that longer term being UC-free will have major benefits for your academic work.

I hope you're able to resolve the pus situation. The only minor complication I've had so far is that the skin around my belly button scar turned quite red and got a bit weepy. I tried out some Fiucidin and that seems to have sorted it.

Personal life is great, thanks. I have no regrets at all about having the surgery, and am thankful for a great surgeon and medical team.

I still have to go through j-pouch surgery, but it looks like that will work out well timing-wise. My wonderful colleagues are covering all my teaching this semester, and I'm due to be on sabbatical anyway from January 2017. Hopefully that'll give me enough time to get used to the j-pouch, and recover generally from the surgery, before I start teaching again (in Sept. 2017).

Are you at a UK uni?

Great! I'm pleased for you, that your UC days are gone.

I'm not an academic, but I'm in academia - I just finished my PhD a couple of months ago and am now continuing as a post-doctoral researcher in the lab. I got sick right in the middle of my PhD and pretty much had 18 months off, between the flare & surgery. I haven't lectured, but would have had many meetings (one-on-one and group) and such with my stoma & no one would notice unless I had told them. Some of my lab know (my friends/people who were there when I was sick) and my supervisor knows everything and was great through it all. I was very nervous before my PhD viva that something would happen with my ostomy (worst time for a blowout!!!) but it was fine and no one knew any different! Sometimes my stoma will be noisy, but I place my hand over it and put pressure on it which muffles the sound a lot! You may be too soon out of surgery to push too hard (especially if it's a bit sore), but you will get there!

Oh my I really liked that stoma history lesson and it gave me a giggle!

Funny you compare your days to the ups and downs of the market as I am in financial services. I work for the corporate office of a large financial firm in the US. Part of what I do is time sensitive and affected by the market so my colon and my job did not get along. It was very stressful. Certain times of the day I just could not eat because I could not afford to be in the bathroom. It really is amazing how much easier my job is when I am not sick. Even though I have meetings and sit in a desk in close quarters with other employees no one knows that I have an ileostomy. My stoma tends to be pretty quiet at the office.

I also had a pretty generous leave from work and my last month home I could have worked if I needed to but used that extra time to heal more and gain more weight. However I felt like you some days and it was a blessing and a curse some days to be at home all day.

GC4249 - that sounds like a fantastic book! I will definitely read it. I wonder how much 18th century British perception of the bowel was shaped by the prominence of 'bowels' in the King James Bible? Compared to more recent English Bible translations, 'bowels' carries a broad range of meaning in the King James (compassion, the womb, the GI tract, the affections, the belly etc) and seems to crop up far more often. William Wilberforce is another 18th century Brit now thought to have had UC.

SuperBlanks - congratulations on successfully gaining your doctorate! That is a great achievement for anyone, and all the more so when you have to battle UC in the midst of it.

Fascinating - I just had a look at Cultures of the Abdomen. I look forward to reading your own contribution to this field at some point! The Canadian philosopher Charles Taylor has some really interesting material on how the relationship between the 'self' and the physical world changed in Western cultures from the 16th century onwards, including how we relate to our own bodies and poo. Apparently in parts of 16th century Europe, if you were out walking with a friend and noticed an interesting poo, it was quite alright to pick it up and hold it under your friend's nose to get his opinion. Thankfully that is no longer normal.