AIBU to try to control my Crohns through diet?

[lotsofquestions22]

Ive had Crohns about 8 years. When i was diagnosed i was really really sick, bed bound for 4 months. I was on steroids for 10 months then got really sick again so went on to Infliximab for a year then i was on azathioprine for 5 years. I eventually had a reaction to Azathiorpine and came off it just over a year ago. I have been doing fine. Eat what i want, overweight etc.

The last couple of months i have been getting lots of cramps, some even waking me at night. I never got cramps when i was first ill. It was the diarrhea and bleeding and generally feeling awful that made me see the doctor. So i havent recognised the symptoms as Crohns. Also i was really hungry so i just ignored it a bit. However i then started to bleed. Turns out i have a fissure. So now im left with tummy cramps and a severe sensitivity to alot of foods. I already quit sugar and fizz in March but now im reacting to nuts and crisps. Im vegetarian so my diet is getting very limited. I also feel very bloated alot of the time.

Ive spoken to the crohns nurse who is going to call me back with a plan from the consultant but so far 2 weeks since tests and no call.

When ive heard people say they manage their crohns with diet i just didnt understand it. But i am finding if i only eat very bland food and small amounts my stomach is cramping less. I dont have diarrhea and havent had this whole time. Im still bleeding a tiny bit but the fissure isnt totally gone (not Dr diagnosed but i can feel it and using anusol has helped). I feel Ok in myself except needing the loo a few times a day and usually in the morning.

I assume the consultant will suggest steroids. Obviously i dont want to have them if i can avoid them.

Im 100% convinced that stress has bought this on so im trying to remove some of the stress from my life.

So AIBU if i carry on as i am and just limit my diet and put up with the pain?? If you have crohns without medication and just limit your diet do you feel well? Do you get cramps? How do you know its not going to escalate into a full on flare up again? Im so frightened of getting as sick as i did last time and now i have 2 young kids to look after.

I had a stool and blood test 2 weeks ago and both showed high inflammation. I only had a blood test the beginning of July for a general health check and all was clear so its come on very quickly.

any words on managing crohns with diet would be appreciated.

Sorry for the late reply op, I'm glaring myself and I've spent most of the weekend either in the loo or asleep in bed
I was on infliximab for just over 5 years, I was diagnosed at 30 just after my 2nd child, I had infliximab for 5 years then including until I was 28 weeks pregnant with my 3rd on the consultants advice ( although I'm now convinced the weeks of infliximab during pregnancy have affected my youngest immune system ),
I had my son at 36 weeks, I was induced as my crohns was so bad and the plan was to get me back on treatment ASAP, I was back on infliximab by the time I was 4 weeks post partum by my body reacted completely differently to it after the pregnancy, I stuck it out for another 8 months or so but the side effects from the meds became worse than the disease in my opinion ( at the time)
So I decided to stop all meds and see how I went and asking I did manage for a few years. Unfortunately when I started to flare the IBD department at the hospital I went to were useless, I'd call the nurses and no one would get back to me, then I learnt my consultant had retired but I hadn't been allocated to a new consultant so I was just floating around in the system a bit.
I eventually got to see someone and they did the usual of sticking me on steroids and sending me away, within 2 weeks my mouth was a mess of mouth infection and ulceration that led to half of the roof of my mouth being ulcerated to the bone, exposing 3 teeth down to the jaw bone. I ended up having several teeth removed under general anaesthetic plus dead tissue removed. After several biopsies as cancer etc was suspected i found out the steroids had triggered a side effect of the infliximab ( I can't remember the exact name of it) but the consultant I had at maxiofacial has seen it before several times in patients who have had infliximab, just not as bad as mine was, at one stage they thought half of my top jaw/roof of my mouth would have to be removed. A year on it still hasn't healed properly and now more teeth are affected, but at least I'm starting to get the crohns under control with the humira.... if only they could cure the fatigue, that is what really kills me

I don't have crohns but my husband does. He is adamant diet is not a factor as the doctors told him, I know though that too much red meat makes him poorly even if he won't admit it! What we have found is the nature of it every 3 years or so he seems to need new meds' because of how the disease alters.

Hi all
So im on a 6 week course of steroids. Im on day 2. My fissure feels alot better already but im still getting some stomach pains. No diarhea or bleeding though. Im finding im eating very bland food - bran flakes and soy milk, kefir yogurt and cheese sandwhiches. Im Ok with fruit and salad but not salad dressing. What sort of diet helps heal the inflammation?

I have had UC for over 35 years. I have tried every method of diet control there is. What it accomplished is spending lots of money and just getting sicker overall.

But I have learned a lot about what I can tolerate and what I can't. Everyone is different but I have to avoid things like kale and spinach. Also multigrain bread and cereals. Also certain fruits that are high fiber.

Crohn's causes strictures which can lead to a blockage. High residue/fiber foods are not recommended. A blockage can be life threatening.

It is of course up to you how you treat your disease. Believe me I understand why you would want to throw in the towel and say diet only. I have felt that way many times. Also felt like ok that's it, liquid only, it is so frustrating to have these diseases.

I have been on azathioprine. I felt nauseous the entire time. They would have to tie me down to give it to me again. I have swallowed endless prednisone pills. Really, it is what kept me going and working but I can now see the awful effects it had on my body. I have also had other oral meds, suppositories and enemas. All very fun.

I am on Entyvio right now, every 4 weeks. I had an infusion today and then promptly slept all afternoon instead of working, but it helps and I am not taking anything else.

Despite being in "endoscopic remission" I still have to watch my diet. I went a bit crazy with raw peppers and cucumber twice this week and wow do I know it. I also really need to stick to low fiber breads. I try to stick to lean protein. Eggs are a big go to. I supplement with B12 in particular, by using nutritional yeast.

Try modifying your diet but honestly, going down the I hate all meds and all I need to do is restrict my diet path is fraught with danger. IBD is way more than just a tummy ache!

I really feel for you and I can imagine how you are feeling. Take care. May the loo be close and the paper soft.

I have found kefir smoothies very soothing. I put in kefir, some yogurt, blueberries, banana, some calcium/vit D supplement I get as a liquid (I think it is called Wellese), a bit of protein powder and sometimes a bit of peanut butter in a blender. I freeze bananas so it makes it like a milk shake. It is gentle in the morning and doesn't usually trigger an hour long bathroom parade.

Chicken or other bone broth is nutritious but not vegetarian of course. It is hard to get enough protein if you can't eat beans, pulses etc.

One other thing, as you are on prednisone now, stay on your doctors etc if you get bad side effects. I get very shaky and have taken propranolol which really helped. Also I have had a sleeping med as I can't sleep on prednisone.

Crohns is horrible... I think you would be unreasonable to give up the meds, but also unreasonable to NOT try an anti-inflammatory diet that works for your body. On the proviso that you are getting adequate nutrition. This is difficult with any gut-related auto-immune disease. (I have one as well, and frequently need top-ups via transfusion. They make me feel great, btw, so don’t shy away from medical help for this if you need it!)

FYI it is not the norm in Canada to control IBD with diet. I am in Canada and I am on vedolimumab (Entyvio). It has been a complete life changer for me and I am so grateful.

IBD and Crohns are definitely not the same thing, though.

This is the liquid vit d/calcium I have used in smoothies. I don't know about UK sources. It is easier to take for me in a smoothie than yet another tablet.

https://www.google.ca/search?safe=off&client=safari&channel=ipadbm&sxsrf=ACYBGNQQsRiQSCV5DcAvbiMalRFya9Z3Iw%3A1568422889015&ei=6Tt8Xa9GjvL6BNGDuvAG&q=wellese+vit+d+calcium+uk&oq=wellese+vit+d+calcium+uk&gsl=mobile-gws-wiz-serp.3...5302.10806..11204...0.1..0.140.1246.2j9......0....1.........0i71j35i39j0i22i10i30j33i160j0i22i30j33i22i29i30j33i21.qhVUkaw8ZSs#imgrc=KTMMabhXJxuIFM:

Oops link not working, and yes they are definitely not the same. But they are both inflammatory bowel disease and there is massive overlap in treatment. The life experience is often similar too. The symptoms are very similar often but can vary of course.

I get my vit d/calcium at Costco.

ca.iherb.com/pr/wellesse-premium-liquid-supplements-calcium-vitamin-d3-sugar-free-natural-citrus-flavor-16-fl-oz-480-ml/39209

Crohns is such a serious disease. I think biologics are miracle drugs.

I’ve known two people who followed a chrons diet. In fact, I didn’t get the impression it was optional.

I haven't got crohns but have the very similar ulcerative colitis (diagnosed 25 years ago). I've also spent years trying all sorts of diets in an attempt to stay off steroids. I think it's a case of experimenting to see which foods make you feel better/worse as everyone is different.

I don't believe you can use diet to control your illness entirely without taking any medication, but with a little trial and error you may be able to identify some trigger foods to decrease the chance of flaring in the first place and generally make you feel better during remission.

One thing I have found was that if I picked up on any early signs of a flare (tummy ache, runny poos) I could sometimes - not always - pull it back by completely cutting out my 'bad' foods. This would only work if I caught it quickly enough.

The foods that seem to affect me personally are processed foods or foods with flavourings in like crisps, anything sugary, nuts and dried fruits, anything greasy or with a high fat content. Until only recently I thought that milk and dairy was a problem for me, but after a bit of trial and error I discovered that once I cut out tea I was able to drink milk with no problems.

Like you, I'm also vegetarian and completely understand your concerns about your diet becoming too restrictive. I'd suggest making small changes here and there and seeing how you feel.

Good luck.

Ooh, also ... another thing that's helped me massively is eating my evening meal really early. It sounds quite drastic but I try not to eat anything at all after about 6pm. It gives your digestive system a chance to do what it needs before slowing down for the night. Can be more lenient at weekends/as a one off but it's made a huge difference to me.

Some really good advice here based on lots of experience. I agree, eating early. Also eating little and often.

Try to monitor and record the foods that bother you. And, whatever you do, know It is not your fault. It is not your bad diet, your bad lifestyle or anything else you have done. It is just bad luck. Be kind to yourself.

Easier said than done,I know.

Thanks everyone.
Mango we sound similar. The foods that now aggravate me are ones ive lived off my whole life like nuts etc. So that's where I'm now struggling to know what to eat.
I'm not in any way suggesting I wont have meds. I'm on prednisolone. I just wandered about trying to do what I can to help my body heal if at all possible.

The prednisolone is already making me unable to sleep and nauseous. Joy.

IBD and Crohns are definitely not the same thing, though.

Crohns is part of the IBD family, treatment for Crohns is almost identical for any of the other IBD conditions.

My son is 18 and was diagnosed with crohns when he was 8. Diet alone is very hard to control this disease. If you have active inflammation diet alone probably won't work. My son was put onto azathioprine when he was 8, and been on infliximab for over 4 yrs. These at the moment are keeping his illness at bay.

He has been on modulen diet when he was flaring, a total liquid diet which gives the bowel a rest. Have you tried this? You need to be on it for about 8 weeks ---- very hard for a 9 yr old [ as my son was at the time when he went onto modulen ]

Also look up the FODMAP diet, this is helpful with people with gastro problems. The diet is tasty and offers advice on different foods.

I, myself, have diverticulitis, and this diet has helped me. It doesn't mean you can come off meds, and I would never advise this without speaking to your doctor.

Lots, I was diagnosed with UC in 2013 after being ill for years and just ignoring it/ hoping it would go away.
Later the diagnosis was revised to Crohns Colitis by a different consultant.

I am currently using pentasa and mercaptopurine along with all the other stomach protecting drugs and vitamins to help with the joint pain. I’m flaring this week but I am seeing my consultant on Monday. I don’t consciously use diet to control my condition but when I feel ill all I want to eat is cheese sandwiches on white bread and tomato soup.
I’ve refused steroids for years, i’d Rather be ill than take them because of the side effects and long term implications. It’s the fatigue that is killing me, that and the joint pain right now.

I echo the low residue /FODMAP diet during flare ups. Small meals often works for me. You can flavour it up by using flavoured oils and salad cream.

I find that wholemeal and seeds are my nemesis if it's rumbling - can literally feel the seed shells as they scrape past my terminal ileum

Can I also add that you should take B12 as the steroids and disease can affect bone density. Also worth noting that depression is higher in people with UC/Crohns so keep an eye on your mental well-being too

I've found yoga transformative for stress management - stress is a key aggravating factor for flare ups. My gastro consultant explained that we have millions of nerve endings in our gut, when we get stressed we go into flight/fight and either rush blood to the gut or shut down blood supply from it. This physical action, which is accentuated when we are stressed, has a huge negative affect on the bowel. Makes sense.

Mindfulness and meditation are good too,

If you aren't yet a member of this (used to be NACC) then I can recommend it. https://www.crohnsandcolitis.org.uk/about-us
Get well soon. for everyone suffering this shitty (literally!) disease.

Apologies I'm meant vitamin D