Sick and tired of being sick.

[connie367]

I have crohns. Diagnosed 7 years ago. Had surgery 80 percent of colon removed. Affects many other parts of my body. Feel tingling in legs and hands. Some days very dizzy.

[Emily_Jesper Partner Sense About Science]

It sounds like you've been going through a difficult time. Have you heard of the support organisation Crohn's and Colitus UK? crohnsandcolitis.org.uk/ They offer local support groups and an information helpline.

There's also lots of information on the Core Charity website: corecharity.org.uk/conditio...

[Penel]

Perhaps having a look at the type of food you are eating might be helpful?

There has been research recently suggesting that some food additives may worsen conditions like Crohn's. The research was done on mice, but as someone who has gut problems, I know that emulsifiers in processed foods affect me badly.

nih.gov/researchmatters/mar...

There is currently research looking at different diets and gut bacteria/ biome.

clinicaltrials.gov/ct2/show...

Hope you can find a solution to your health problems.

[Marz]

I was diagnosed with Crohns some 42 years ago when I was 27. This followed ileo-caecal TB when several operations were performed and gut removed including the Terminal Ileum. In 2005 I was diagnosed with Hashimotos - Auto-immune Thyroid illness.

At that time I began to join up the dots - serious infection - followed by auto-immune illness of the gut and then the thyroid. Auto-immune conditions like to hunt in packs I have learnt so much in the last 10 years and have now found wellness. I strongly suggest you are tested for - B12 - Folate - Ferritin - Iron - VitD - all these need to be HIGH in their ranges and not just in range. Do NOT ever accept normal from your GP - normal is an opinion and not a result. Also you are entitled to have copies of all your blood test results - so you can monitor things yourself and of course post on forums for assistance.

I was checked ?? - every six months with the Gastroenterology Department - but not until around 4 years ago did I learn how serious being B12 deficient actually is. It could possibly be the cause of the tingling you are experiencing. B12 is metabolised in the Terminal Ileum. The Docs forgot to tell me I would need B12 injections/treatment for life. I started injections around 16 months ago and have them weekly. B12 deficiency is a neurological condition and NOT a vitamin deficiency. With Crohns there will be poor absorption of all nutrients so you need to supplement. In 2007 I underwent a big spinal operation in Germany for Stenosis - which I now think was the demyelination of the spinal column due to the B12 deficiency.

b12deficiency.info/signs-an...

I also take 10,000 IU's of VitD daily. A recent colonoscopy here in Crete where I live - shocked the Gastroenterologist - there was still evidence of Crohns but the biopsies revealed low to medium lesions. A far cry from the endless surgeries and complications. Having laughed at my T3 thyroid treatment and the VitD when we met - he had to agree I was doing something right. The Active thyroid hormone T3 has the most receptors in the brain and the second highest amount in the gut - so when the T3 is low then things begin to go wrong in crucial areas.

Since maximising my thyroid treatment and supplementing LOTS I have improved my health enormously and do not take any other medication other than for the Thyroid. Going gluten free seems to be a must for those with Crohns and yes I went GF over a year ago in an effort to reduce my anti-bodies. There are some excellent books that are worth reading - The Brain Maker - by David Perlmutter and - Sustainable Medicine by Dr Sarah Myhill. Both have excellent websites - in particular Dr Myhills - it is like having a Doc at your side

As a matter of urgency I would have your B12 tested along with the others I have suggested. Read as much as you can so you can ask the right questions when you see the Doc.

Thyroid tests - TSH - FT4 - FT3 - Anti-TPO - Anti-Tg - the last two are test for anti-bodies. If there is anything I can do please do ask any questions and I am happy to help. Sadly Docs overlook B12 Deficiency time and time again as they are trained to look at ranges and forget to look and listen to the patient. On the B12 website I have linked - there is a questionnaire you can do which will indicate your deficiency - very useful.

Do hope you are soon feeling an improvement - it's a long journey to wellness - but having good levels of the basics is certainly a help. VitD is not just a vitamin but a steroidal pre-hormone and needed in every cell of the body - so lots of D needed. Supplementing is not expensive. It is also anti-inflammatory. There is some research mentioned on the website - vitamin d council - in connection with Crohns....

Apologies for the long post - hope you find something useful....

[Catherine7777 in reply to Marz]

Thank you there is a lot to learn I have had crohn's disease for a really long time and have to fight for health Best wishes Catherine

[Marz in reply to Catherine7777]

Hopefully you will find OPTIMAL health soon. I would consider some of the items I have mentioned above - many have made a huge difference to my journey....

Wishing you good health.....

[Catherine7777 in reply to Marz]

You are generous to have left such a long post. Living in a Mediterrainian Climate can be very good for the health. So also is taking gentle exercise walking for an hour every day.

All the best to you again

[Marz in reply to Catherine7777]

You are so right about gentle exercise. I started teaching yoga at 65 - and have 2/3 classes a week

I have just read Dr Sarah Myhills new book - Sustainable Medicine. I am following one of her suggestions to prevent gut fermentation - take 2-6000mcg of VitC on going to sleep. I am taking 2000 and noticing changes.....

[Catherine7777 in reply to Marz]

Fermented food s are good like kefir, sauercraut, kimchi whole yoghurt. Olive oil, med: diet !

Just living in greece must be enchanting !