Living with Psoriatic Arthritis (PsA)

Giving up!

Oh Bless YOU!

Make sure they test for C-Diff. Very common after antibiotics. Start the BRAT diet for a bit; bananas, rice, applesauce and toast. Nothing to drink that you can’t see through.

Hugs, prayers and healing energy

Thank you. C.diff is definitely being checked for, although I doubt it is that considering I feel absolutely fine - if p***ed off! I am beginning to wonder if what I have now is IBS following on from the antibiotics. I don’t know why it would keep going back to normal for a few days at a time if it’s not IBS. That would certainly be a pleasanter reason for everything than the scares that are going through my head now after two weeks.

If you feel fine, then fair chance you are. Which means IBS is almost certain. Not fun, lots of resources on the internet how to manage. You are smart and will figure it out!!

It’s all a bit overwhelming to be honest. Last night, I thought there was dark/black blood but now think that wasnt the case and that it was something that was undigested. Guess we shall find out next time. Just seem to be staggering through at the moment!

Today’s update. Tried probiotics for the first time with my main meal. I have for some reason never believed that they would work. But. No pain, no rushing to the loo. Can they work that quick or one big fat coincidence? No idea. But it’s the first day without pain or bathroom-rushing for two weeks. We’ll see what tomorrow brings.

But I’m sure I’ve read somewhere you shouldn’t take them with biologics? But I’ve been off mine for a month now, so thought they would be ok in the short term.

And today we go back to square one. This time with blood again, just for good measure - although my understanding is that blood isn’t unusual in such cases. I am really getting p***ed off with it now. And bloody hungry!

Obviously you’ve now gone back to your GP, I hope. Time for further investigation Darinfan.

You would hope so. Spoke to a doc this morning, but the sample results aren’t through yet. He said this length of time for antibiotic D isn’t normal, but not unknown either. The blood also isn’t abnormal given what my stomach has been through. I have a proper appt on Thursday with my own doc, and if there are no answers by then - or no results of use - then I’m going to do my best for a gastro referral. I think it’s awkward for them because it’s not diarrhea every day. It goes back and forth like a yo-yo

It’s obviously a colitis though most likely. Something has irritated your gut, be that IBS or IBD or something else. When I went through my 7 weeks of diarrhoea hell last autumn, I was going too frequently for the prep needed for the colonoscopy so they did a contrast dye scan instead. So much nicer. The dye thing makes you believe you’ve wet yourself but you haven’t and all your clothes stay on pretty much.

Interestingly the gastro guy would have given me sulfasalazine but I was already on it, so instead said let’s stop that one. I didn’t stop either that or the Benepali through the entire time. My only reason for that was I stopped the Benepali at week 4 for antibiotics following a tooth extraction and went from a fast responder to it to a slow responder and was extremely angry about that considering Benepali’s life or half life (can’t remember which presently) was 15 days. So 24 hours after stopping sulfasalazine I was better and it turns out the cause was sulfasalazine eventually throwing a temper tantrum at Benepali being added. A rare but not unknown issue.

So you’re on the hydrox one (sorry can’t spell it) and you’ve stopped the Benepali - have you asked your rheumy team about any similar rare interactions between those two drugs given there’s one between sulfalsalazine and Benepali? Are you still taking the hydrox one? If there is any reaction it might run a different course to the reaction I suffered too. It’s worth at least asking though, isn’t it, just cover all bases? Your GP won’t know. And possibly if you get the gastro referral they won’t know either.

I so feel for you though, it’s so horrible spending weeks just basically in your bathroom or running to it.

And poo samples take ages to culture too, mine never grew a thing, which flummoxed everyone at the time. That helped rheumy figure it out though.

Hope this helps.

Hey Poo. I don’t think that can be the case for me as I haven’t reintroduced Benapali yet in case this is an infection. As soon as we get a stool result back we will know one way or the other.

I went shopping with mum yesterday and did little but cry for the first hour. The bipolar hates this kind of thing and eventually breaking point occurs. So we quit the shopping and went to the docs, and saw someone I hadn’t seen before, which was helpful as it gave a second opinion.

The stool sample came back yesterday afternoon. Voided, because I forgot to write the date on it. So we have to start that all over again. Talk about angry!

But the doc had a good feel and said there was nothing unusual in my stomach, and the sounds it was making were normal. She should hear it after food. She wants another blood test on Monday because of the blood, but thinks that will be fine also.

She then went through the various options of what she thought it could be: antibiotic upsetting stomach bacteria, c diff caused by antibiotics, other infection not related to antibiotics, and ibd. She said we can’t definitely rule out anything more sinister but it’s low on her list of likely outcomes. The first stool sample came back stating there was inflammation (and then it got lost), so she thinks an inflammatory issue is the most likely outcome. The pattern of how stomach behaves apparently doesn’t add up to something deadly either. Ditto the type of burning pain i get, too.

So that’s good. Two docs say the same thing. That helps a bit from a mental point of view. Last night was relatively uneventful. One trip to the loo which produced virtually nothing. I was a bit concerned by the colour but still couldn’t tell you if it was dark green (not enough bile through quick transit) or black. I’m hoping for the former, but it’s difficult to tell. I guess we’ll find out as the weekend progresses!!!

So glad you got the chance to get another doctor to see and give that sort of reassurance. And let’s hope the next poo sample comes back with a valid result whatever it is and doesn’t get lost!

This has turned into a sick version of Groundhog Day. Always the same pattern. Diarrhea one day, nothing for two or three days, and then diarrhea again. I feel like bill Murray!

It’s incredibly tedious I’m betting.

@Poo_therapy, I was looking up some things relating to your experience which the big D that you had written about. There are numerous articles now that state that Etanercept/Benapali can CAUSE ulcerative colitis and that, oddly, it doesn’t always go away when the drug is stopped. Humira, on the other hand, can be used for treatment of UC. I am wondering if I am just unlucky and been one of those that don’t get better when it is stopped. I’m going to ring the bio nurses later today and see if they are aware of such issues.

That’s really interesting and I wasn’t aware of that. I was told it was a sulfasalazine issue and it not liking Benepali. And I got better within 24 hours of stopping sulfasalazine. I continued with Benepali on its own from end of December to beginning of June but sadly it ceased working. But my gut was perfectly fine during that time. Maybe like me a swop to Humira or its biosimilars is on the cards for you? But for different reasons. I would however really involve your rheumy team with your present gut issues though.

Yes, Enbrel can trigger late onset IBD, though it’s rare. Your Rheum should be aware (mine was - seems I’d had one episode of atypical Crohns at 16, then the next proper bout was in my late 30’s, when I went on Enbrel and weaned off steroids at the same time - either can cause an IBD episode). That possibility will really require passing over to a gastroenterologist for full investigation I imagine. Certainly for most folk, Humira works very well for it, so as Poo says, it may be a relatively simple solution, if that’s the issue.

The FODMAP diet can also do wonders for some people with IBD, so might be worth a try as @tntlamb recommended. In the meantime, keep talking to your docs. Once they become sure it’s not some nasty infection/parasite, at least you can use some immodium for symptom relief!

Oh and for IBS (cause lots of us who have IBD also have IBS), peppermint tea can really help.

I rang the biologics nurses today and filled them in on events. They confirmed it could be the Benapali. If so,they will move me to Humira - although the damage is done if it is Colitis, and Humira will only control rather than undo that.

So glad you made rheumy team aware. Guess it’s now the wait for the poo sample results. Controlling IBD issues is good too though, especially if it also helps PsA at the same time. And since PsA always needs treatment ergo contolling IBD goes hand in hand with that. If it is the Benepali and if it is IBD though. Best of luck, it’s such a miserable place to be with all those bathroom vists.

Confirmed today that there are no infections in the sample. Not sure if that is good or bad.

So it’s not an infection - therefore it has to be down the IBS or IBD route doesn’t it? As it’s not like it was in my case obviously caused by my meds. It does mean thankfully you need no more antibiotics. What has your GP said or haven’t you seen him or her yet?