Gut bacteria over growth ! Eeeeeee

[Denise64]

Hi All !

Hope you all had a fab Bonnie night. N your pet's not too frightened.

Right so I'm awaiting biological drugs got my appointment this Friday with the nurse for pre talk scare me to death info.

Thong is I've been having tummy troubles had all the tests scans etc nothing bad thank God.

But gastronolotist says could be bacteria over growth in lower intestine and for me to take a month's worth of anti biotics. A MONTHS WORTH.

spoke with my RA consultant who was then putting me on steriods whilst applying for biological drugs

He said that's not a good idea to take something as an incase he was writing to my gastronolotist tp say so. N that I had to ring his Secretary to re in force it.

So now the gastronolotist has said ok don't take them.see you back in clinic. My point is what if I have got this over growth i don't want to start biologics with sonrhonh that will get worse with it as lowering my immune system more . Should I ring the gastronolotist up and say should I just take them? I mean can you take them along side steriods?

But I've looked this bacteria over growth n people with suppressed immune systems are prone to it.and there are other tests a breath test or a urine sample but I'd have to wait to go to clinic to see him in December, do you think I should ring gastronolotists secretary and ask?.as really want to get this sorted before biologics .

Hope this makes sense

Has anyone else had this problem?

Dee xxx

[helixhelix]

Hugely unhelpful of your doctors! What you need them to do is talk to each other and then give you the options with pros & cons of each option - not you having to scrabble aroumd trying to work out the best thing to do yourself. Unfair.

But I think you are right that you need to get this sorted. Often it ends up as trying to work out which is the least worst option. So push to get more discussion with the gastroenterologist.

(Rheumy saying that not an idea to take antibiotics just in case makes me laugh. I was put on antibiotics for two months as a precaution for starting biologics as I can't be tested for latent TB. So I was stuck on latent TB drugs just in case....)

[Denise64 in reply to helixhelix]

Hi

I know I'm in between n it's crazy it's not right I just don't know why they can't talk to each other n letters take for ever .

I'm going to ring the gastro guys secretary first thing tomorrow.

I need this sorting out .

Not waiting until December, I'm having the blood test on Monday for TB n I'll be talking to my Rhumy nurse tomorrow too.

Thanks

Just don't need the stress of sorting this my self just want a real grown up with correct knowledge to make a decision.

Thanks again

[nablur in reply to helixhelix]

Yes. I totally agree. How infuriating.

[nomoreheels]

It's not helpful for you when the two Specialists aren't treating you as a whole, they need to put their heads together & work out the best plan for you.

There are other tests you can have for bacterial overgrowth other than opting to just take a month's course of antibiotics. You mention the breath test. My h has just completed investigative testing, among others were two hydrogen breath tests. I would have thought it's something you could have too so might be worth pushing for this rather than opting for what I see as possibly an easy temporary fix with biologics being your next RD treatment step.

Just my immediate thoughts.

[Denise64 in reply to nomoreheels]

Hi

Thank you

Your right you mind me asking has your h come back positive? As i think it at may be anti biotics that is the cure but nest knowing first.. don't want to take a month's worth if not needed

Xxx

[nomoreheels in reply to Denise64]

You're welcome. I don't mind at all. The first test didn't but the second revealed lactose intolerance. He's since had a wireless motility capsule test to see how quickly food is passing through his gastrointestinal tract. The results of this aren't back yet.

I was incorrect saying he's completed testing. He was to have another meeting with his Gastroenterologist next month but it's been moved to January, it's then they'll discuss the next stage of testing.

I hope this helps some.

If I can, you said you hoped our pets weren't too frightened. We have two dogs who have in the past been frightened but our next door neighbour last year bought Adaptil for her two & said it made a big difference. So, we did the same & it made a big difference with ours too. So if yours does, or anyone else sees this it might be worth investing in it for next year, or if like us you have neighbours who have fireworks over Christmas & New Year. x

[Denise64 in reply to nomoreheels]

I'll pass that on as my sons dog well she our family pet was terrified stayed under the bed for 2 nights. He needs to try this new year n next Bonnie night. Thanks

I'm on the phone in the morning to gastro secretary but I know she will say i have to wait until December to see him will have started biologics by then.

Nightmare stuff this is xx

Thanks for the info

[nomoreheels in reply to Denise64]

Pleased if it will help her, poor thing, it can affect them badly. We opted for the plug-in which we plugged in a fortnight ago & then the tablets at around 4pm (which they had no hesitation taking, they smell like yeast tablets & took them as they would a treat). They recommend to give them 2 hours before expected problem (fireworks, thunderstorm etc) which tried first but we still had what we call the shakey shakeys, not as bad as normal but giving the tablets 3 hours was better.

I hope you receive clear info when you call Dee. x

[Fruitandnutcase in reply to nomoreheels]

No, it’s really annoying that they all want to treat their ‘own’ little part of you without consulting anyone else. Be more helpful if they would get together and sort your whole body out.

[nomoreheels in reply to Fruitandnutcase]

Wouldn't it just. My h is being treated by multiple teams at the mo & some do talk with one another but one specialty can't share his records from one team to another because they're in separate buildings, still the same Trust, but how daft is that? It's bad enough he's being seen at 3 different venues because of funding.

Only today his diabetic nurse called for an update, his blood sugars are way too high at the mo so she's been keeping a close check on him. She needed to speak to a doctor to clarify something & rang back saying he wanted to try him on GLP-1. He's obviously not read his recent notes because not only is he under Gastro with ongoing testing he's also had pancreatitis & has gallstones, both of which are contraindicated. Crazy mad. Trouble is our Practice is all over the place because our GP has recently left so we're left with the ones he stopped seeing to see mine.

[Denise64 in reply to nomoreheels]

Oh no that's worse than me esp if they are in same building. Mine are in same hospital but practice on different days.

N like you said letters have to be signed off before sent scanned to a different consultant.

Takes ages.

N if I'm honest they look at your notes just before you enter the room they have such a work load they just not got the time.

So the hope of them talking to each other is minimal.

But I'm going to do my best tomorrow to get this sorted.

Thank you for your help xx

[nomoreheels in reply to Denise64]

That's ok. I hope you're able to formulate a plan tomorrow.

[Fruitandnutcase in reply to nomoreheels]

You really do have to read the patient information leaflets that come with your drugs. When I go to the doctor I always take a list of what meds I’m taking and ask if anything I’m being given is compatible, then I check again with the pharmacist. It’s tough but you’ve got to be careful - as you’ve found out.

[Denise64 in reply to Fruitandnutcase]

I know I do double check as people are only human and in the past I have been given wrong drugs well ones that interact with other drugs so I'm always careful .

We have to be on the ball don't we xx