Information about Crohns: Good... - Crohn's and Colit...

Crohn's and Colitis Support

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Information about Crohns

Daisy50 profile image

Good Afternoon.

Just wanted to ask if anybody knows, do you have to be on medication to help with crohns.

Thank you

27 Replies

Hi Daisy I myself don’t have Crohns but my friend does and she was very bad with it they got her on so many different pills and different tablets but she decided to stop all medication and last time I spoke to her last she was experimenting with different alternatives plus change of diet. The change of diet really helped her she cut out dairy wheat and went all natural. She’s now trying herbs and when I see her next as I only catch up with her a few times a year I will ask if there’s anything that she recommends. Go onto you tube and put in cures for chrohnes disease as it’s what she did and it’s helped her so I hope it helps you. She told me the medication wasn’t helping and the side effects from the medication only made hers worse. Have a great evening. J😀

Daisy50 profile image
Daisy50 in reply to

Thank you so much Jeromicus, I just wasn't sure what I should be doing as the specialist was of no help. I would be very grateful if you could ask your friend for any advise, that woukd be very kind of you. I will take alook at you tube and see what I can find

in reply to Daisy50

Hi daisy it’s awful that your specialist wasn’t specific as I have the same issue with my rheumatologist and I have been going for almost 2 years now. I come out from all the appointments with more questions than answers. You sometime think what the point of going. 😂. Yes when I see my friend next I will get your some advice. Cheers. J😀

Daisy50 profile image
Daisy50 in reply to

Thank you. Thats exactly how I feel, its a pain when all you want is some help and be able to understand what to do

Gjkas profile image
Gjkas in reply to Daisy50

Daisy, im the same as you ,,but i haven't got a clue about what to eat.I also have Diverticulitis and I.B.S .

Am also going in Hospital to have mv Gallbladder removed etc.

Ill be watching out for what you have to say. Perhaps i can get help that way.

You Take C...Gjkas.

Daisy50 profile image
Daisy50 in reply to Gjkas

Sorry sorry to hear you have to have an operation, I hope it goes well.

I find if I eat something and I think its that that has upset me, I remove it then try it again at a later date if it does it again I then don't touch it. I find certain veg a no no most deffo no raw veg, any spicy food some dairy and I dont touch any brown bread , brown pasta or brown rice.

The specialist I saw was a waste of time no meds no help, just said its going to get worse but I am discharging you.

Gjkas profile image
Gjkas in reply to Daisy50

Thanks for getting back to me Daisy, Fancy that Stupid Doctor ( QUACK )

tell you that your problem is going to get worse, but that he is gonna discharge you. .Sometimes i wonder why we bother going to see half of these Doctors. I very often come out feeling worse than when I went in.

The one Doctor that I found was really good was the one that did the Colonoscopy for me. He told me that i had Diverticulitis quite bad. He told me not to eat anything at all with pips in,no matter how small the pips are. Like grapes, Tomatoes etc. .No cheese, because of the fat content.

I was also told to Avoid, Butter. No Fizzy drinks. Was told that SOUR DOUGH BREAD WAS OKAY.?????.

Some say that White bread is better than Brown. .Others have said Brown is better than White.

Was told that the white of an egg is bad for you, but the Yoke is okay..

Crazy Isn't it. You don't know what the hell to eat for the best.

Anyway Daisy, im gonna finish for now. I'm in a lot of pain.

But if you find out anything diet wise that could perhaps help us, will you please let me know .If i can find out anything, I'll get in touch with you

Take Care. Hope your Tummy Trouble eases up for you today. 😚.Gjkas.

in reply to Daisy50

Hi daisy what about keeping a food diary. I have IBS and if I have wheat or dairy or fizzy pop I am just so unwell. I think it’s trial and error. What works for one person doesn’t suit another. I would also mention it to the drs that you felt you are needing more of an idea what foods you can or cannot eat and the specialist didn’t give you much support. Did they even give you a leaflet to take away. They may be able to get you an NHS print out from the drs then go online and type in what foods to avoid. It’s all trial and error as both the drs and specialists are not always helpful but it’s worth a try. Let us know if it helps. J😀

Daisy50 profile image
Daisy50 in reply to

I have been removing all food that I can't eat, not left with much as I am allergic to fish and I can't seam to eat chicken as it give ne stomach ache ect.

The specialist gave me nothing

in reply to Daisy50

That’s shocking that your left to deal with this by yourself. When you have the condition you have the drs and specialists should be monitoring you. Making sure that you get the help

You need but sadly we are just left to just plod on all alone. I am sorry your diet is just so restricted I am the same allergic and sensitive to everything. If I just have a coffee I am in the bathroom for hours. What about keeping a food and symptom diary and have you been sent to an immunologist and a dieticians. Also have you had any recent blood tests and scans done as you may have other conditions that the drs may not pick up on. Try only having bottled water, low salt, no dairy or gluten and see if that helps. I am shocking I am Living on coconut water and little amounts of boiled rice and veg. Try and get copies of your medical records to see if you can find anything in your notes that may just give you some answers. I got my notes and found out all sorts of information that had been withheld from me. To micro bleeds on my brain to gord. Let us know how you get on. J😀

Daisy50 profile image
Daisy50 in reply to

No immunologist or dieticians, I had bloods a while ago and I had a ct scan which it what showed up my Crohns and other test to look for crohns but thats all. We have to pay 50p per sheet here for our medical records..

Thats disgusting that yoi were withheld thid information.

One of the GPs in our practice never put the right info on the screen my daughter went in told her she had had enough and couldn't cope and didn't want to be here. When She wemt to another Gp I could see that the other Gp had put that she was very happy and very talkative

in reply to Daisy50

Omg they are totally useless. You expect that the so called professionals can put in the correct information when needed. This is how they make mistakes but the problem is they are not accountable to anyone and are untouchable. Can’t believe you have to pay for your medical records. It’s all ways of stopping us from gaining control over our own records. The whole system needs a complete overhaul. I hope your days a good one. J😀

Daisy50 profile image
Daisy50 in reply to

I've been back to the Gp they will not send me back to the specialist and will not do another calprotectin test as they say they have been told they are not allowed to keep doing them. So now at a loss.

Hi, I would suggest you contact the dietician, at the hospital you are under, then contact the GI team, and ask both for advice on medication and diet for Crohn's disease. Depending on the response you get, contact PALS at the hospital, and put in a complaint. There is no cure for Crohn's,( I have had for 52 years), but there are certainly ways to alleviate the pain and symptoms. For the first 28 years of my Crohn's, I took no medication, but had annual, severe flare ups resulting in numerous resections, they then found a drug that has kept me flare free (for the most part) for 24 years. I have adjusted my diet, and have to continually reevaluate which foods I can and can't eat.

Daisy50 profile image
Daisy50 in reply to FRreedman

Thank you, I will be contacting them tomorrow and speaking with my Gp.

Gjkas profile image
Gjkas in reply to FRreedman

Hi ,i wonder if you wouldn't mind telling me the name of the Drug that has been helping you with your Flairups

I am laying on the settee in so much pain, i just feel like screaming .GRRRRRRRR.😨😰😱😱🤢. This is me.

Thankyou so much. Gjkas. x

FRreedman profile image
FRreedman in reply to Gjkas

Firstly, I cut out all fizzy drinks and alcohol, I don't eat peanuts, sweetcorn, Brussel sprouts or baked beans, I also make sure I chew all my food really well.

I take 150mg Azathioprine per day and 1g Pentasa per day.

I hope this helps

Gjkas profile image
Gjkas in reply to FRreedman

Oh thanks so much for your advice .

Im gonna try that, I'm gonna try what you have advised..Will have to write that big long word down , ,because I'll never remember it. Or be able to spell it. .

HAHAHA. 😊 Gjkas

FRreedman profile image
FRreedman in reply to Gjkas

Good luck. I hope it works for you as it does for me. Just me careful what you eat, and if you even think something is going to upset you, then do not eat it.

Gjkas profile image
Gjkas in reply to FRreedman

Thans so much for your advice .I'll do what you have advised me.

I have noticed that certain foods do upset my stomach really bad. I'm gonna make a list of what upsets me the most and avoid them.

I've got so many health problems going on, i don't know whether I'm coming or going. I have to see the Anaesthetist shortly to see if i can have a General Anaesthetic before I can have my Gallbladder removed...

They thought i had Pancreatic Cancer first of all because they found that I had an Enlarged Liver , Blocked Bile Duct, Cyst on the Pancreas and Gallstones. But in the last few weeks my Liver have gone down and my Bile Duct seems to be working okay. They think it's the Gallbladder that has to come out.

Trouble is I need to be able to pass the Admission Appointment with the Annaethetis first.

2 of my Heart Valve's aren't working, but they can't replace them because they said I wouldn't survive the OP. I also have C.O.P.D, Angina, Asthma, Large 16 cm Haitus Hernia, Umbilical Hernia, Chronic Fibromyalgia and Rheumatoid Arthritis, Osteoarthritis and Osteoporosis with a few other things going on as well. I don't know what the hell is starting what off.

But Thankyou Freedman for helping me out.,,I really do appreciate it. 😓Gjkas.

Daisy50 profile image
Daisy50 in reply to FRreedman

They won't give me any medication the specialist refused and has discgarged me

FRreedman profile image
FRreedman in reply to Daisy50

I'm sorry? You say you've been diagnosed with Crohn's disease and discharged by your GI consultant? What is it about incurable, lifelong, incapacitator does your consultant not understand? I think, that, under the circumstances, I would request my GP to refer me to another GI team in another hospital. I would lodge a formal complaint about the treatment (not) received, and also about the consultants obvious lack of knowledge regarding Crohn's disease.

I found the KETO diet quite effective. Google it. It’s a high fat low carb diet. No sugar wheat processed food or gluten. It really seemed to help my crohns. You have to stick with it. Can take months to help but when in ketosis the body produces anti inflams which counter the inflammation apparently.

I have just had a hip replaced and running up to hospitalisation I had a bad flare up which has continued. I was off food and losing weight so I’m eating anything I fancy at this moment to get my weight back up but plan to return to keto ASAP. If you have Netflix or can do then 30 day free membership trial (which I did specifically for this) watch The Magic Pill. It really inspired me to empty my cupboards of all processed food. Good luck. Xx

Thank you so much for your help. I will look into this. I hope you feel better soon. Good luck

You should not have been discharged by the consultant. If you are OK then a yearly appointment is usual to keep you in the system. Cant understand why no meds, although I would go to the GP and aske for some Prednisolone to see if it will damp things down.

I am on no meds at the minute, as my body seems to be attacking my chest muscles/joints instead.

I have had pred, azathiprine, Pentasa, Budesonide over the years.

Apples are a trigger for me, raw only. Cooked apples are OK.

I am a bit worried as the last time I had some Pred for my Asthma, iI had a bad reaction to it, sweats, white as a sheet and felt worse so dont know what I'll do.

I can't believe the consultant has discharged you after just bring diagnosed with crohn's. With no meds what so ever. That's just cruel. Have you had other tests apart from a ct scan, Colonoscopy, endoscopy, mri or just a ct. I would definitely put in a complaint

Ive had fit test that came back with blood calprotectin test was high ct showed crohns as They thought I had lupus but it acually showed crohns and mri came back ok. My crp levels have been high. Colonoscopy showed some lesions but the biopsies came back inconclusive

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