Infection vs Flare

[katidid]

Warning: if you’re grossed out by digestive stuff, don’t read!

Hello all!

So in the middle of a bit of jam. For ~7 weeks have been having tummy troubles. Not unusual for me as I was diagnosed as having undifferentiated irritable bowel disease and pancreatic insufficiency as a result of auto immune inflammation. I sat on it, waiting for it to pass per usual. Three weeks ago it started to get much worse. Pain, very frequency bowels and not able to eat much besides boiled noodles without it ending up in a disaster! Two weeks ago, I started passing blood and what looked like mucus. It was extremely painful and there were days I would scream into a towel while things were “en route”. Last week it was large amounts of bloody mucus and no tolerance for solid food.

My immediate thought was Chrons or Colitis. The thought of adding another AI disease on top

of the others really kicked me down. Especially because I can’t take the meds for those diseases because of the Lupus.

Back to two weeks ago: I brought the symptoms up with my Rheumy and he made a note and said it was a flare. I pushed him a little since I never had bleeding or the mucus. He sort of blew it off.

My gut (pardon the pun!) told me to call a gastroenterologist. I explained the issue to the nurse and they told me to come in right away.

They did some tests - expedited to get results in hours - and told me it wasn’t a flare but Colitis as a result of a C. Diff infection!! I was shocked. I know enough about hospital and medicine to know that this is bad if not caught and treated.

The doctor was kind enough to call me and was a tad horrified I had been sick as long as I was and said in no uncertain terms I was days away from a ruptured colon. This can kill you. He was calm not trying to scare me, but emphasized the importance of treatment and staying isolated for awhile.

Then a miracle happened, he called my Rheumy twice!! This sounds silly but my doctors NEVER talk to each other. They just fax things back and forth and never bother to read what was sent.

I’m on day three of treatment and tomorrow I get to go back into the world. Unfortunately I’ll have to get another colonoscopy to see how many plaques (the stuff I was seeing) had formed and check for any holes/tears/ulcers. Fingers crossed I’m ok on the inside.

So my question for you all: at my next Rheumy appt. how do I confront him? Reading about C. Diff I matched 100% of the symptoms of a *severe* infection. How did he miss it? Why did he miss it? I like him a lot but I could have died had I not questioned his judgement.

[popsmith1874]

Wow that's a big miss and just as well you acted on your instinct, I would confront him on it if it was me and if he gave me any crap I'd ask for another Rheumy, your very lucky and I know their very busy but you could've died, glad it's getting sorted now xxx

[whisperit]

Sheesh, that was a close escape. Well done for following your instinct, and you must be right to seek a direct and honest reassurance about this for your future care. All the things that you mention are all legitimate and justifiable concerns, that should be raised openly.

How you do it might depend on what are your ideal outcomes from the meeting with your rheumy? eg are you open to remaining with her/him? Would you want some sort of shared care arrangement? Do you want to have specific tests, routines, a schedule of reviews to be set up? Or do you want to move another consultant or specialty to take the lead? Rather than setting it up as a criticism of past care, maybe it would be worth framing it in terms of future solutions? For example,

'Obviously, I was very concerned that it was only when I took an independent decision to seek a gastro opinion that this problem was picked up. How do you think we can best avoid a similar situation occurring again?'i

'How do you think you can coordinate care with the gastro consultant to make sure we stay on top of this?'

'What tests or schedule of reviews can we put in place so that I can feel confident this doesn't happen again?'

'Do you think we should be thinking in terms of a shared care arrangement, or even have the gastro consultant lead my care?'

I do hope things go brilliantly from here on. Keep us posted! x

[PMRpro]

"How did he miss it? Why did he miss it?"

Because he is not a gastro specialist - and they DON'T talk to one another these days. In the old days there was a mixed team on a ward and when there was something one doctor didn't know about, someone else did. It is still much the same here where I live but they still miss things. OH recently spent several days in hospital because of fluid on his lung. He only has one - it matters. They changed his diuretic - or rather, added to his diuretic. That was fine - but they didn't say at discharge that he needed to be monitored. His GP didn't pick it up either - even though I mentioned it. The night we got back from a trip to S Korea he was really rather "strange" and it worried me. A neighbour agreed and called the emergency doctor. It turned out it was a very low potassium level - not the alternative suspicion, a stroke, He spent 2 noghts in the stroke unit while they sorted out the potassium and decided what diuretic to try next. The head of the unit complimented me on being "an intelligent and sensible wife".

But what would have happened had I not realised there was something wrong?

I think you have to bring it up with your rheumy - so he doesn't do it to someone else. Joe Public would mostly just have ignored it on the grounds "the doctor said it was fine". Luckily you didn't.

PS - nearly forgot to say: Get well soon!

[Treetop33]

You could think about making a formal complaint. I'm not a routine complainer but I did this once (over something much less serious) and it reset the tone of engagement positively. You had a life threatening moment and even if it wasn't his/her specialism they should have told you to seek emergency help or get it checked out further.

[AndrewT]

Dear katydid,

Sorry to hear, of your Troubles ('Screaming into a towel!)- without being Patronising- you poor thing! Why did your Rheumatologist 'Miss' your infection, you ask, the truth is I don't know: however, that he did, is a Worry. It could just have been a 'Long Hot Busy Day', but is that an excuse? You say that he is a Nice Guy, in which case Speak, to him, about this. Tell him about the PAIN, that you were in, Lay it on Really Thick- the thicker the better. If he is the Gentleman, that you think he is, then he will either Apologise Profusely and/or offer to send you to another Specialist- bear in mind that this might be some distance away.

I know that this IS a, very difficult, decision that you have to make Katy and I, really do, wish you 'Luck' with it. Hopefully, in six months time, you will Come back, to us, to tell how Happy you now are. This is my Prayer, for you, honestly it is.

AndrewT

[Bebe76]

Sorry you had to go through this. I hope you make a full recovery soon.

"How did he miss it? Why did he miss it?"

Unfortunately I think and our doctors sometimes blame things on lupus that they shouldn't, simply because we all have a hundred different/weird symptoms popping up regularly. However, our doctors *should* know better! The symptoms you had (blood/extreme pain) should have been a red flag. Bloody stools is not a typical symptom of a lupus flare as far as I'm aware!! I hope this is an important reminder to him that he should be taking his patients' complaints seriously.