Hi I'm new to this

[Suchislife]

Hey, I'm not sure how this works my first time on things like this. I have been up and down for years with my crohns and am currently having a strange time after coming off my last lot of prednisolone. Any had the same?

[Marz]

Sorry - cannot help as I have not taken steroids for the Crohns I was diagnosed with over 40 years ago. Anti-inflammatory pills always made me more ill. Have you considered trying to heal the gut by going gluten free - or trying other exclusion diets. The Nightshade family of foods cause me problems - however we are so individual.

What else are you taking ? Vitamins ?

[Suchislife in reply to Marz]

Thanks for reply , I have changed my diet accordingly and I have it normally in remission for long periods at a time, my only downfall is if I have to go on antibiotics or any other medicine as that starts a flat up and my doctors give me steroids to control it I have never had this before and been on them many time, I am always so happy and bubbly and I try not to let my crohns get me down I had spent many a nights at the start in tears but Since coming off my steroids this time I feel so depressed and keep crying I have read that this can happen coming off steroids but it's the first time I have felt anything like this.

[Marz in reply to Suchislife]

Maybe check out your B12 levels - if low it can also affect your mood. With gut disorders it is common to be low in Ferritin - Iron - Folate - VitD and B12. All need to be OPTIMAL and not bumping along the bottom of the range.

Anti- biotics can destroy the good bacteria in the gut - and we need a balance between the good and the bad. Research the Gut Micro-biome and give it some thought. We have over 2 pounds of gut bacteria - and they play a vital role in our health.

Your B12 needs to be around 1000. Few Docs seem to understand its importance.

b12deficiency.info/signs-an...

B12 is metabolised in the Terminal Ileum - so with any form of bowel disorder the absorption can be affected and lowered. Taking a B12 lozenge under the tongue will bypass any gut disorder as it will be absorbed into the micro-circulation.

How do I know this ? I had my Terminal Ileum removed over 40 years ago with TB - followed by more surgeries for Crohns ..... I now need B12 injections for neurological damage.

[Angep in reply to Marz]

Hi Marz, do you control Crohn's with diet alone? If so did you have food intolerance tests?

[Marz in reply to Angep]

No I have not had any intolerance tests. Most of my knowledge has come from being diagnosed with a Thyroid problem in 2005 when I was 59. So I am on the Thyroid UK forum here on HU. The Thyroid affects so much and I have the auto-immune version - Hashimotos. So by being correctly diagnosed and treated I have improved my overall health. The active thyroid hormone T3 has receptors in the gut - so when T3 is low - then things go wrong.

Low Thyroid affects levels of vitamins and minerals. I take lots of VitD and have weekly B12 injections and take T3. I also live in Crete so lots of olive oil and a good diet. All natural foods.

[Angep in reply to Marz]

You've had a lot to put up with health wise.youve obviously gained a lot of knowledge over the years. I'm considering having intolerance tests which costs around £300. But it's supposed to be helpful for people with IBD, as well as other problems. I don't want to have to take drugs if I can help it so I'm trying really hard to find other ways . I've had part of my bowel removed a few weeks ago due to perforation and a large abcess. But they think there is still some Crohn's left behind. I've got to go for tests in August .

[Marz in reply to Angep]

Which part did you have removed ? If it was the Terminal Ileum then you really do need to have the B12 checked.

I think the known irritants are gluten - dairy and the nightshade family ( potatoes - tomatoes - peppers )

Hope you soon recover from your op. Yes Crohns does affect so much of the bowel - not just the site of the surgery. It's all about keeping the inflammation down with the right foods and supplements. Have you read up on Tumeric ?

Which supplements are you taking ?

[Angep in reply to Marz]

I had a left hemicolectomy and end colostomy. I am taking turmeric as I have been trying to research what may help. I take vitamin c and ferragloblin. I was unable to stomach ferrous fume rate before my op as most things just made me sick. So I pretty much stopped eating. It says on my discharge notes inflammatory changes in adjacent fat. So I'm having a gastroscopy on 12th of August. I'm doing ok to be honest. Just worry sometimes what may lie ahead so I want to know what I'm dealing with regarding the inflammation they saw. I am eating ok now, small and often.

[Angep in reply to Marz]

I'm also taking Manuka honey As I read that was a good anti inflammatory I have a teaspoon on a morning in green tea with lemon

[Marz in reply to Angep]

I think you should have your B12 and VitD levels checked. People with Crohns are LOW in both. VitD is a steroidal pre-hormone and is needed in every cell of the body. It is also anti-inflammatory. B12 helps with everything. Check out the website below and tell me what you think !

b12deficiency.info/signs-an...

[Angep in reply to Marz]

That's blown my mind about the b12!! That's frightening to think that being low in that can cause so many things!! I went to the respiratory clinic about 3 weeks ago while I was there I asked them to check my iron levels as I was tired and breathless and wanted to be sure it wasn't because my iron was low. I had a blood transfusion in hospital because of it. Anyway my haemogloblin was 128.it also said my crp was 5!! Not sure what that is. This info is from a copy of the letter sent to my doctor. So the dr didn't feel any medication necessary at the time. I haven't looked it up but I assume b12 is a different thing from having iron levels checked?I'm getting really bad sweats on a night and through day. I'm 54 this year so thought it was menopause but I understand it could be Crohn's. So I shall make appt with my gp and ask for the blood tests you recommend , thanks max 😀

[Angep in reply to Angep]

I meant Marz 😮 Tut (daft spell checker!!)

[Marz in reply to Angep]

Click onto Films on the above website and you can watch the movie - Could it be B12 ? Same as the book you can buy on Amazon. It's a true story about Sally who wrote the book. You can rent it for 24 hours - all done on-line. It's 90 mins long. Has me in tears of sadness and frustration. I have spinal damage due to LOW B12 and cannot feel my legs and feet well.

You certainly need B12 and VitD tested - and ask for copies of the hospital tests you had done - as is your legal right.

[Angep in reply to Marz]

I shall watch the film, and Thankyou for the information. Just need an appt so I shall do that tommorow!! Should be fun trying to get my own doctor who actually listens !! X

[Marz in reply to Angep]

Hope all goes well and let me know how things go

[Angep in reply to Marz]

Yes I will do 😀 Thanks again 🙏🏻

[Angep in reply to Marz]

Hi Marz, had docs appt, she thinks my sweats are menopausal rather than the Crohn's!! She suggested HRT but that's another story. She said I'd had my b12 checked while in hospital and it was ok. She's arrangedfor me to have my vitamin D checked next week.when I get results I will ask for copies of all blood tests I've had done in last 6 months as I' pretty much had them done daily for 3 weeks in hospital. Hope your doing ok😀Haven't watched the film yet but I will. Got a lot going on at minute so haven't had much time x

[Marz in reply to Angep]

You need to know what an OK result was for your B12. Docs think you are OK if you are at the bottom of the range - when it needs to be around 1000. Please look at the videos to understand just how serious LOW B12 is. I mentioned above what happened to me.

I am not a Medic - just click onto my name above and read my edited Profile of my journey to wellness. We have to keep reading to learn about managing our health.

Yes it easy to allow being busy to stop us taking care of ourselves. I am still working at 70 - running our business in Crete - A Guest Villa and studio - I also teach yoga - and am generally very busy trying to fit in walking my dog and swimming lengths to keep fit and well for the winter months. However old age also makes you realise what is important in life.

Wishing you well .........

[Angep in reply to Marz]

I've watched dally on you tube, I've ordered the book as that way I can keep referringback to it and sharecitvwith other people, I read your profile Marz and you're an inspiration to everybody you really are. Amazing lady x

[Suchislife]

Thank you so much . That is greatly appreciated. I will go and get checked for those things and get supplements if needed.

I got c -diff on one of my hospital visits and that is something that when reoccurrences happen then I get put on antibiotics and that starts my crohns.

How are you feeling and coping with things?

[Marz in reply to Suchislife]

Have only just seen your reply - if the above was for me Sorry to read about the C-difficile.

Am coping really well thank you - see my reply to Angep above.

[Angep]

Hi Marz, can I ask you is your Crohn's controlled with diet alone? If so did you have allergy tests at all?

[Meridee]

Hi I have been on numerous steroids with my crohns. I always had a horrible time with the pills and now they give me shots which seem to work better.