help severe ‘neuroenteric disorder’ - can’t find the answer - best probiotic? Have klebsiella overgrowth small bowel

[Chouchou1234]

hi I was on Symprove for a very long time - that was not working at end too bloating

neuro gastro suggested biocult - it’s ok but stopped helping

Any suggestions

Optibac has ‘fillers and starch etc’

help - please 🙏

No prebiotics or FOS etc

any suggestions?

Nutriadvanced?

I have constipation and very low T3

[Blearyeyed]

I'd suggest that you send an email to your Neuro Gastro for another suggestion for medications or pro/ pre biotics and more advice as your cause of IBS is medically complex .

The very low T3 can also add to your constipation , so if you are already taking thyroid medication I'd suggest you contact your GP or endocrinologist and get your thyroid panel checked again. Also request a full blood count , Folates , Vitamin B12 and iron panel count to be done. You may need to increase your thyroid treatment to reduce its effect on your bowel function and cause of IBS-C.

Any type of small bowel overgrowth can cause less absorption of nutrients from food or supplements , and your medications , and you may have an ongoing vitamin deficiency that can alter your thyroid function and cause more constipation and IBS symptoms.

Hope you get some advice soon , Bee

[Chouchou1234 in reply to Blearyeyed]

Thank you

Neuro gastro was useless .

It was me that found out my T3 is super low .

Perculapride stopped working

Living on 30 dulcolax a day

T3 - for 6 weeks but I’ve put more weight on

Something has worsened my small bowel has huge distended bowel loops .

Is that very bad small bowel loops distended .

The gastro team

Has given up -

I used to abuse very very high doses laxatives and thyroxine to help me go but now nothing is working . I go for weekly colonics . It takes nearly 2 hours of deep deep massage to get rid of trapped poop .

Now have an insane rectocele which is so bad feels like everything g coming out my vagina .

If I take Fosfomycin- it’s a wonder antibiotic my stomach works and everything is brilliant . For 24 hours .

I was put on antibiotics for over a year and now resistant.

Bloating is so bad and then it just paralysed.

Everyone has given up and they just want to stick me on ng tube . No way !!

[Blearyeyed in reply to Chouchou1234]

Have you only seen a Neuro Gastroenterologist in your area?

I know there aren't many consultants in neuro gastro in the NHS , in fact , I live in Wales and we don't have one and I can't be referred over the border because of the Welsh devolved system , but if you are in England , you can ask to be referred for a second opinion to a bigger , or different , Unit that has more experience in your condition even if it is in a different County.

It may be worth you researching your condition and who specialises in it , or contacting a charity or support group for people with your gastro issue who could recommend a specialist for you to be referred to.

You really shouldn't be taking that many laxatives a day , it will cause you more damage and make the bloating worse and reducing how much of your medications you absorb , and how much nutrition you are getting.

They also make you incredibly dehydrated internally which ends up making bowel movement even harder.

Perhaps asking the Neuro specialists for some different types or combinations of nerve relaxant medication would be more help.

Are you getting colonic massage or actual colonic via tube?

Is this something that is being done under medical supervision or privately?

The colonic massage from a trained therapist can help but colonic irrigation can actually make the bowel more weakened , bloated and distended , especially if you have them too regularly.

If you have a neuro gastro condition it's the nerve signals and contractions that need to be treated rather than just changing the diet or using laxatives to move the poop.

Stool softeners rather than laxatives are more appropriate for bowel dysmotility.

Referral to the Dysautonomia Clinic could be your answer , the right drug and physio treatment plan for nerve dysfunction can make a big difference to bowel dysmotility, it did for me.

If your T3 is very low it would be a good idea to discuss that with the GP and get a referral to an Endocrinologist because self medicating probably isn't the safe way to treat your problem with the gastro issue as well. If you aren't getting the doses right you could do more damage to your autonomic nervous system making your ability to absorb nutrients and remove waste worse.

Ask to see a dietitian if you haven't already , or a gastro specialist in liquid foods and infusion treatments. Your system might respond well and improve with this extra nutrient help .

The blood tests , especially B 12 and iron are likely to be very important for you as you may be very deficient in these because of over laxative use . Low B12 can seriously effect your thyroid function and can be part of the reason you have low T3 , as well as affecting your nerve function making the bowels worse.

It sounds like a second opinion is vital for you , you may even benefit from some minor surgery , and you could consider being referred ( or self referral) to a nearby bowel and bladder clinic where they could help you with neuro modulation testing and treatment to get the nerves and muscles working again.

They can also help you with bowel exercises that help to strengthen the muscles and improve nerve responses which can reduce your need for invasive procedures.

There may also be other antibiotic drugs or combinations that you are not resistant to if you found long term antibiotic treatment useful in the past. The right consultant could be the key to that.

Please don't give up on getting professional help yet , even if you feel like the doctors you have seen so far have ran out of options , there is always the possibility that they don't know all the possible treatments that could help you.

[Chouchou1234 in reply to Blearyeyed]

Thank you so much for your detailed reply.

Neuro gastro has written me off .

I’m totally exhausted and lost 😞 as they have done so many tests and all normal but these problems I did not have before .

I’m so grateful for your reply.

I will write properly when I can find the energy .

Petrified to eat tonight .

My small bowel is so distended I can’t breathe.

Thank you again

Xx

[Blearyeyed in reply to Chouchou1234]

I know that your experience with doctors has been understandably upsetting and may put you off asking for medical help , especially when you are already feeling awful.But if you symptoms are affecting your breathing , your pain gets more severe or you start to have heart or coordination and thinking problems please don't delay , go to A and E , they may not be able to help you with the long term problem but they will be able to give you emergency care and keep an eye on you until your symptoms are back under control.

I've been in that situation several times and although it didn't help me get any further with my diagnosis it did stop me from becoming critical.

Take care , Bee