Newly Diagnosed and Confused

[bluelagoon01]

Hi. I was finally diagnosed with PRD in October after developing acute diarrea, massive weight loss, painful cramping, bloating, nausea, you name it. My consultant at UCLH who specialises in PRD prescribed antibiotics for SEBO, ordered blood and stool tests and referred me to a dietitian to help with my weight loss. Since then, I've had no contact whatsoever with the hospital, despite trying really hard, to discuss my blood results (I can see them on the portal and it looks like I'm anemic), my stool test results still aren't showing and my dietitian referral isn't until January. In the meantime I'm still loosing weight (a steady 2lbs a month so now under 8st) and I'm desperately in need of help. My GP prescribed iron tablets, but after reading the leaflet I'm reluctant to take them as it says to beware if you have a bowel obstrubtion (I do) or divaticular disease (I do), so I'm not happy taking them before talking to someone who understands what's going on. My fatigue is so bad on most days I can't do anything other then sleep. Is there anyone I can talk to who might be able to just give me some advice while I'm waiting for the dietitian appointment? Apologies for the long post but I'm feeling really desparate.

[Greenfingers20]

Hallo. I'm a PRD sufferer too -although you need a specialist to reply-we have a weekly chat on Zoom on Wednesdays at 7pm with 2 experienced ladies from PRDA_UK. If you scroll down you should find a post from Hidden who can send you the link. Fi x

[bluelagoon01 in reply to Greenfingers20]

Thanks so much I'll be there.

[Greenfingers20 in reply to bluelagoon01]

Look forward to seeing you. Chin up!

[Greenfingers20]

[e-mail] is the email address for Sue and Sarah who run the online Wednesday chat. Its a lovely group who support each other

[jude-the-obscure Community Pioneer]

Hello . I too suffer with PRDA but am managing it much better these days. Try ringing the consultant's secretary - ask for them when you ring the hospital and tell them how poorly you are; if you can you must also tell your GP of your anxieties about iron tablets - they can cause constipation and./or diarrhoea, but if you are anaemic you may need further help and investigations. Your pain and distress are as important as any other's problems at this time.. keep calling and asking for help until you are heard. This takes energy I know. Have you got any support at home for encouragement and care?The weight loss must be worrying for you.

Without knowing the whole picture it is difficult to advise - ask your GP for more help especially an earlier appointment with the dietician.

What is SEBO - have not heard of that - is it an over growth of organisms in the small bowel?

Sending a hug and good wishes, Hope you get more support fron the professionals very soon

Jude 😊

[Picauville in reply to jude-the-obscure]

Hi JudeSIBO is , as you guessed, Small Intestinal Bacterial Overgrowth (SEBO is a brand of vacuum cleaner!) I was diagnosed about 8/9 years ago. The symptoms in my case are bouts of severe diarrhoea and vomiting which is painful and debilitating. There are antibiotics that work though they are not necessarily licensed for this use. I too lost a lot of weight though it has now stabilised, but I don’t put it back on! Hope that helps.

[jude-the-obscure Community Pioneer in reply to Picauville]

Yes I guessed right - I had the breath test but thankfully t was negative. Had a small bowel MRI which was horrendous! I nearly disgraced myself on the X Ray table when they asked me to lie on my tummy after 3 litres of radio opaque contrast medium by mouth. They had to do the scan with me on my back. Pelvic radiation has severely damage my sigmoid colon but small intestine OK!

[Blue_Hawaii in reply to Picauville]

Bacteria overgrowth, I myself was diagnosed last year. Breath test confirmed the diagnosis I was prescribed antibiotics by the consultant, GP will not prescribe it.

[bluelagoon01 in reply to jude-the-obscure]

Hi Jude, thanks for this. It's so incredibly frustrating so I appreciate your suggestions and live in hope someone somewhere hears me soon!

[jude-the-obscure Community Pioneer in reply to bluelagoon01]

Keep acting like a dripping tap - they will eventually get the message! it is frustrating, I agree. I finally made a private appointment for a colonoscopy which revealed the damage to the large bowel but have since seen another gastro enterologist who specialises in PRD. He says I must on no account allow anyone to intubate my colon again. He was helpful as he checked out my small intestine, but with my dietician I have been learning to manage my symptoms, Take careall best wishes Jude

[bluelagoon01 in reply to jude-the-obscure]

Hi I've been very productive today and have contacted PALS at my hospital to ask them to help. They are fantastic! Within 10 minutes I'd received a personal reply and within the hour they've now accessed my records and are talking to the GI department to ask for answers. I'm learning you really have to assert yourself if you want to get anywhere. Glad your dietitian is helping.

[jude-the-obscure Community Pioneer]

That's great! You do have to be persistent at a time when you really don't feel up to it.glad you found PALS - I had forgotten about them!

[SpaghettiBetty]

I second the advice to speak to your consultant, ring their secretary and leave a message. Hopefully they may prescribe supplement drinks/shakes (ensure/fortisips that kind of thing) to to help with your low weight and continued weight loss, this is what my gastro did. Certainly voice your concerns with your gastro and GP but also stress how much the fatigue is impacting your daily life. Hope you hear from someone soon x

[bluelagoon01 in reply to SpaghettiBetty]

Thank you SpaghettiBetty, fingers crossed.

[accidentalcarnivore]

Very nice to meet you today. Glad you joined us. See you next week. blessings

🥰

[bluelagoon01 in reply to accidentalcarnivore]

So lovely to meet you too. Am inspired by your food journey and feel hopeful I'll also find an alternative way of eating which will help. 😀

[Whittlestone]

Have you tried contacting the Penny Brohn charity. They really helped me with dietician etc

[bluelagoon01 in reply to Whittlestone]

Thank you, I'll look them up now. Really helpful.