Giving up!

[darinfan]

We all want to give up some point, right? It’s been one of those times.

Perhaps too much info for some in the following post!

About two months ago, I had the pleasure of shingles, and so had to stop biologics. Then, a couple of weeks back got an ear infection and had to stop them again. Eventually was given antibiotics.

Then last Wednesday, all hell breaks loose, with symptoms very similar to when I had the norovirus, except without the feeling ill bit. So really severe stomach cramps followed by really bad diarrhoea. Spoke to the doc and it was suspected that it was the clarythrymicin (excuse spelling). The next day brought a rather nasty rash in my mouth, so ended up at the doctors for that, too. That night, back in the loo only with blood at the same time. Frightened the life out of me, and so, off I trot to A&E. Blood tests taken, and all absolutely fine (although I’d had some the week before, so guessed that would be the case). The doc said not to worry, and that it was probably bleeding because of inflammation due to the diarrhoea the day before. Friday seems a bit better, still going, but no more blood. Saturday back to full on runs again with more blood. Back to A&E (as was told to do). Stool sample taken, but heard nothing back and so assuming all is ok with that. Was told it was probably the antibiotics and it would be gone in a week or two. Otherwise, it’s camera time.

Then things get better. Sunday - nothing. Monday - nothing. Tuesday - go to the loo a bit, perfectly normal.

Then, today, we go back to roughly where we started with the same symptoms as last Wednesday - from the awful cramps (they are horrendous) through to the runs (although no blood that I could see)! But it all seems to have been over and done with in the space of an hour or two.

While I probably wouldn’t be so worried if the upset stomach had continued for a week, I am somewhat confused and anxious about it going away and then coming back. My health anxiety is through the roof, and now I’m worrying it’s far worse than an antibiotic reaction - the wonders of bipolar. Luckily I’m at the docs tomorrow, but I have an awful fear that this is going to end up with some awful tests or other if it goes on much longer.

The only glimmer of hope (I use that term loosely) is that I had two cups of tea today - and that would be my first milk since last Thursday. I have heard that lactose intolerance can occur after these stomach things, and that would give a sensible explanation as to why it all kicked off again today. I have read that the reaction to milk would be within about four hours of consuming it - and that timescale would fit. I had the tea between 2pm and 4pm and this all started at 6.30.

While I love my tea dearly, I really hope that I can blame it on the milk, and if I don’t have any, my stomach will go back to normal. Fingers crossed. But am just about at the end of my tether. No Benapali means I can barely move, and the anxiety caused by worrying about what’s wrong with me is making by bipolar completely take over. On the plus side, I don’t feel ill and I’ve lost eight pounds in a week.

Happy days!

[Stoney]

Ugh. That doesn’t sound like a good time at all. I’m sorry.

It sounds like you might be into something, with the re-introduction of milk today. So keep away from milk for now, and also consider taking probiotics for a few weeks to help rebalance things. I encourage you to talk to your doctor about the probiotics too.

In the meantime, you can also a ask your doctor about any over the counter meds such as imodium. I hope you’re feeling better soon.

[Jon_sparky]

You could try lactose free milk.
Hope you feel better soon!

[Jon_sparky]

I am following this diet, my GI track settled right down.
https://www.ibsdiets.org/fodmap-diet/fodmap-food-list/

[Poo_therapy]

Darinfan, you’re not sulfasalazine with your Benepali are you?

Last autumn I had persistant diarrhoea for 7 weeks landing up in hospital in the end on IV antibiotics. It turns out the sulfasalazine didn’t like me adding in Benepali. Oddly I started Benepali in July but this didn’t kick off till November. Finally after those 7 long weeks I was told to just stop sulfasalazine and within 24 hours I was completely better. A rare but known reaction.

I don’t anyway drink milk either. But do eat cheese etc.

Anyway think about what DMARD you’re on with the Benepali too and have a chat with your rheumy team about that also. And best of luck.

[Sybil]

@darinfan

I don’t feel ill

This is very promising, hang on to that! You’d think that anything sinister in the gut department would be very likely to make you feel absolutely vile.

Eat and drink cautiously, enjoy the weight loss and the sun too if possible, put it down to bad luck unless you have definite evidence to the contrary.

You have a very tricky number there … bipolar and PsA. I think you handle things pretty well though.

[Jen75]

Sybil has a point. It is promising that you don’t feel like you are about to die, despite all the diarrhoea, blood and all.

It’s not fun, so be as gentle on yourself as you can. Also, if it turns out you are pretty sure the milk set you off, give yourself a few good weeks before you even try the lactose free versions - when my tummy is in a twist (mild Crohn’s), even lactose free, skim milk will cause a reaction (as will red meat, any sort of fatty animal foods). Eventually I figured out there might be a protein in milk that causes the problem, so they can skim it and de-lactose it till the cows come home, but I still have an, ahem, explosive reaction.

Good news is, when my tummy is stable, no worries at all, I can eat whatever dairy products (and most meat - as long as I don’t go crazy), as it like - the sensitivity is often temporary.

[darinfan]

Thank you for the various comments.

@Jen75 post is particularly interesting in that I tried lactose free dairy milk on Saturday and was back to passing water diarrhea again after it had seemed to be getting better (although nowhere near right) over the previous days. This is the pattern so far:

Last Monday: Icky tummy - IBS like
Last Tuesday: The same
Last Weds: All hell breaks loose, but no blood
Last Thurs: Had gone 24 hours with nothing, had a cup of tea, was back in the loo with blood three hours later
Last Friday: No blood, getting back to normal
Last Saturday: Cup of tea with lactose-free milk - back to watery with blood
Sunday, Monday: Nothing at all
Tuesday: Everything seems to be normal.
Weds: Have two cups of tea (normal milk), and end up back in the loo. Normal at first then diarhea again.

So it does seem that milk may well play a part - lactose-free or otherwise.

So, Jen, can I ask: do you have to avoid every food with dairy, or just foods which have lots of it. Eg, do you have to avoid cake or pies or margarine etc? How do you get on with soy milk etc?

Now off to docs. See what I can find out!

[darinfan]

Been to docs. apparently the tests done on Saturday for c.diff at the hospital aren’t back yet!! The only test back is for inflammation, which go said would be sky high anyway given the upset stomach in the first place. He’s not convinced about milk, although he agrees the timing yesterday would fit in with that scenario. But no milk at all for a while. If the diarrhea recurs then we know it’s not the milk. If things haven’t settled by Monday, then it’s time for another stool sample. He thinks it’s unlikely to be anything “growing” (my word) as it all came on too suddenly and severely for that.

We shall see what the next installment brings!

[Seenie]

@darinfan

We shall see what the next installment brings!

Wow, you’ve really been through it, haven’t you? Just hope that it isn’t C.Diff: that’s a really bad actor.

Keep us in the loop, darinfan, and G D luck!

[darinfan]

To be honest, I’m getting to the stage where I just want to know what’s going on. If it’s found out to be c.diff, at least it will get treated!

[Seenie]

So true. Knowing what it is and being able to do something (anything!) is better than suffering without any idea why. You’re right.

[darinfan]

I thought I had got away with it today and things were getting better, but spoke too soon. Back to the loo we go. Should have gone to bed early and then I might have done!

[Jon_sparky]

Now that I am back on dairy, just cheese and greek yogurt, my allergy symptoms, soar throat and congestion have returned… I think if it is lactose free or aged cheese it should be better for the gut and sensitivities…

[Poo_therapy]

But that’s with no milk though isn’t it? I didn’t feel that ill with my bout of the runs - well I did at the end as I was getting exhausted. Are you on a DMARD with your Benepali?

[tamac]

Watch your electrolytes! Don’t get dehydrated.

[darinfan]

I’m on Hydroxychloroquine. Not sure how much good it does, but it’s a lot of points in scrabble!

On the up side, had a basic meal today and survived, and things have been “normal” in the bathroom department, which is a bit of a morale boost. Still a lot of discomfort beforehand, but that’s not that unusual with me. Now I just hope it continues. And then we work out whether it’s got better again because I haven’t had milk - or whether it was going to do that anyway!

[Jen75]

Regarding your question on Milk, it’s a bit hard to say. When I had diarrhoea and blood I felt so ill - like I was dying - and actually did an almost complete exclusion diet. Fish and white rice only (not even pepper or lemon juice!) for two weeks, then very slowly re-introduced other things.

As a general rule though, I haven’t had any problems with milk in baked goods or cheeses (exception being eating way too much melted cheese - like on a cheesy pizza, but I suspect a lot of people would get an upset tummy from that).

Are you losing weight with all of this? Does it wake you up in the middle of the night to go to the loo?

[darinfan]

It’s been very strange. Even when at its worst, it was a case of lasting for an hour or three, and then done till the next day.

All I can say is that the last two days have been much better. Yesterday, despite some pain, the bathroom visit was normal. Today, I ate more and no pain and no bathroom - which is hardly surprising. I have lost nearly a stone in about eleven days, buy considering I havent been eating beyond crackers and toast for most of that time, it’s hardly surprising. Even doing without milk loses around 500 calories a day as I normally drink a lot.

I am keeping fingers crossed that it’s all over!

[Frances]

Good luck to you and keep us posted on what the doc says.