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.

Not unreasonable at all, it seems.

www.fedup.com.au/index.php?searchword=Crohns&searchphrase=all&Itemid=771&option=com_search

Are you a member of the group, Get Your Belly Out? It was set up by my friend who has Crohn's Disease and her friends. There will be lots of people on there who can help. It has a huge following.

Google SCD (Specific Carbohydrate Diet). I have UC (similar to Crohns but a different part of the digestive tract) and I haven’t had to take medication for 15 years because of that diet.

The diet was devised by a doctor called Elaine Gottschall because he daughter had digestive problems I believe.

There’s a book called Breaking the Vicious Cycle if you want to read the theory (the diet dies are in there as well).

She, not he

Crohns is a very individual disease, I can’t eat veg and fresh fruit without being doubled over.

Have a look at a low residue diet. For me this works, basically cutting out fibre.

Firstly though I’d go back to your Gastro consultant and tackle the fissure, and look at a new med regimes to get the symptoms under control before making big doetry changes.

Personally I'm a meds' person and don't believe you can truly control autoimmune diseases with diet alone.

I'd see your consultant and get on another biologic drug as well as adjusting your diet. A lot of people find Humira good for controlling it.

Actually her not she

When I say the low residue works that’s alongside an 8 weekly infusion and I agree with @SistersOfMerci re the meds

Whatever you do don’t believe the Herbalife/forever living rep when they claim Aloe can cure you.

Only surgery worked for me and I tried everything. Hopefully you’ll be more successful... good luck, it’s a horrendous disease.

Yip very individual. Trying to manage it with diet didn’t work for me at all. Been dx 9 years, have had an ileostomy for 4 years, been on azathioprine and amgevita for 6 years. Have fistulas galore, secondary arthritis and numerous other issues but for the first time since diagnosis my inflammation levels are below 30. The only thing that made me feel better was getting rid of my large bowel completely!

Worth a try, just don’t persevere too long if it doesn’t seem to be working or you could do severe damage.

Another thing to be aware about that I wasn’t informed about over the years - having an autoimmune disease and/or the use of chemo (azathioprine) and/or steroids can bring on premature menopause. I just found this out after being told I’m going through it at the ripe old age of 32 🙄

I don't have Crohn's but have another autoimmune disease. Given it's not a lifestyle disease I would have thought diet alone will not control it. It may appear to work for some people but perhaps they have a less severe version. Many people used to insist diet and loads of alternative therapies worked for my disease many years ago (before drugs became available) but it was just wishful thinking. Perhaps try it but as someone else has said, don't persevere for too long.

@Yabadee I’m going to get tested for menopause next week for exactly those reasons.

I didn’t join the dots til recently and have been feeling totally irrational for the last 8 years (I’m 41 now)

@lotsofquestions22

My story

DX 1998
Laparotomy (exploratory) 1999
Ileal resection, ileostomy formed 2006
Ileostomy reversed 2006
Emergency resection 2015
Dialatation of bowel 2019

I’ve been on

Prednisone
Azathiaprine
6-Mercapterpurine
Pentasa
Humira
Vedo

And another type of steroid that I for the life of me can’t recall the name of.

Currently on Vedo and B12 and occasional iron infusions.

When I suggested diet to my doctor, she said she a nutritionist. I did . She said there is no way at all you can control us with diet (even though in Canada and the USA this is the norm) and advised me to it white rice and bread... the things that make me the sickest 🤷🏻‍♀️

Anyway, it worked.

Wow, I didn’t know that about the menopause Yabadee, I’ve had a pretty similar experience to you right down to having my entire large bowel removed.

It’s really something they should inform young women about!

@Singlebutmarried we’ve been trying for a baby for 2 years but I’d been feeling pretty strange last 6 months or so and finally went to GP. To say I was shocked is an understatement!

@ritamills yip I’m not pleased at all that I was never once told this was a risk. I have an appointment with my consultant next month and I’ll defo be bringing it up with him

Op I could of written your post myself..
almost identical situation but I'm a bit further on. I started rejecting infliximab about 5 years ago, so I stopped all meds and tried to control my crohns with diet, initially it went really well, then without me realising my symptoms started getting slowly worse and worse, fatigue that is now suspected ME but because I have Crohn's unsure of diagnosis, secondary arthritis, and slowly but surely increase in bowel movements through the night and cramps/pain to the extent I'm now on daily morphine. I'm also going through menopause and I'm loosing teeth rapidly which I've since found out is down to the infliximab. Any after a stressful period I ended up extremely poorly, investigations found I have a 30cm section of ulceration. I'm now on humira every 2 weeks and along with a controlled diet and stress reducing methods ( I have 3 boys virtually impossible to avoid stress 😂) I have been slowly improving. However I've just in the past week started flaring up badly again. If the humira doesn't bring the inflation under control I will be having that section of bowel removed which will be my first crohns surgery.
Everyone is different but I was stupid to try and control with diet and meditation alone, ultimately I've ended up worse from it as I'm bedbound 80% of the time with the pain and fatigue.

Thank you everyone. I think the consensus is controlling it with diet isn't a great option. I cant get an appointment with my consultant for 2.5 weeks so I'll keep going until then and see what she says. It's annoying I'm looking for a job and just started getting positive responses and now I'm not sure I can make it to the interviews! I've been a stay home mum for 6 years and was looking forward to going back to work.

I was 37 when I was diagnosed. We had been trying for a baby with no luck and turned out we had a sperm problem.. it took a year to get well enough for ivf but we had a daughter 2 years later. I started the azathioprine when pregnant as I couldn't have infliximab. We tried ivf again for a second child and it failed for 3 years. Even with donor sperm. We eventually had another daughter using donor eggs but I'm convinced the azathioprine ruined my eggs.

I've recently had a test and shows I'm not in menopause yet and I'm 45. The drugs are just awful but I'd be dead without them.

I get so angry when I tell people I have crohns as they all think it's because of eating a bad diet. I say no it's an immune system disease but everyone seems under the impression a better diet fixes it.

I've joined the get your belly out group, tha is for that suggestion.

Pussy- how long were you on infliximab for?
The doctors don't tell you much about the risks of the medications but I guess when your so sick you have to take it. I find it all so scary and upsetting.

Do you have an IBD nurse team at the hospital where your consultant is?

Mine does and they are fab. I can email them and tend to get quick responses on questions.

lotsofquestions yes the side effects of biologics do make some scary reading BUT they have significantly improved my quality of life, so much so I became employed again after years of being unable to.

I'm on a biologic and all continue on it for life if I'm lucky, it's my third one and this one is working so well I refuse to give it up no matter what possible risks there are.

There is an IBD nurse and I spoke to her a few weeks ago and she told me to do the stool sample and blood test. I heard nothing so chased after 10 days and she told me my inflammation markets were very high. She did ask me if I'd had steroids before and I have when I was first ill but they didn't work and I got much more ill and ended up on infliximab. She then told me she would try to talk to the consultant to get a plan. That was 5 days ago. No idea how long it will be till I hear. It generally seems to be when I chase. I have booked a private appointment with the consultant on september 23rd if i don't hear back on the nhs by then. I'm assuming steroids but when I spoke to the nurse 5 days ago I wasn't sure it was crohns as I'm hungry and my poo is formed. So maybe she thought they needed to rule out other things first. But now it feels like crohns.

Don’t just drop the doc and go diet. I’d try to see a good dietician to see what foods can help with the symptoms.

I know people who have helped manage symptoms of this and similar things - but a good practitioner will never tell you to ditch medicine or not go to your doctor.

I’ve seen diet really help with some conditions - and some of these were just making changes to how and what you eat.

You could try but tbh if you are flaring just the act of eating, rather than the food itself, will cause your bowels to move.
Mine is currently controlled by stelera.
Nuts are very high in fibre and fat but the way - these would be one my least tolerated food, even when I’m well.

I guess I've been very lucky the last 7 years since I got well on infliximab and moved to azathioprine. I've been able to eat what I wanted and have had 2 babies. Ugghhh. Big sigh. As I've had a year with no medication and no symptoms I think I kidded myself that my crohns had gone. So nieve I know.

My fissure isn't doctor diagnosed but that's sore and hurting all the time. I'm a bit hot then cold and am wandering if that could be making me feel more ill. I've used anusol and no longer have blood when I wipe but it hurts and feels uncomfortable. It actually hurts less when I poo now but feels uncomfortable all the time.

I don't think a fissure will cause cramps in and of itself. Hope you can see your consultant soon to work out what's going on this time and how best to manage it.

Personally, from things I've read in the past, I suspect that there are a lot of dietary influences and triggers in autoimmune diseases, but that certainly doesn't mean that you can treat an active autoimmune condition by diet without medication, even if you perfectly knew your triggers. IBD especially, is nasty when uncontrolled.

There are two aspects of diet to consider here, one is what diet gives your current flare the best chance of healing, the other is any alterations that, once better, might reduce or postpone the next flare-up. I hope you can make some progress on what works for you once you are back on appropriate medication.

I've often thought that it is unfortunate that IBD/IBS can be used for both Inflammatory Bowel Disease, and Irritable bowel syndrome. I'm sure that's behind a lot of uneducated people thinking that IBD can just be managed by "a better diet".

OP - "a bit hot then cold" sounds worrying as a potential sign of infection as an extension of all this. If you start shivering / get the shakes please seek immediate medical attention. Best wishes.