Crohns Disease and Colitis

[paffuto]

Any fellow sufferers? I have Colitis along with other illnesses and a lady on another thread has Crohns and is really suffering by the sounds of it. I decided to start this thread and hopefully she will find it. It would be great if other sufferers could join us and compare meds, symptoms, etc.

Eat what they want, I mean

Does anyone with colitis not eat Gluten? My husband was diagnosed with Colitis about 2.5 years ago. He was told to try and not eat gluten, does seem to help.

Yes I don't eat gluten and fotheringhay says that she avoids it too.

Definitely in my case, gluten causes a flare.

@decomposing

Thanks for replying. I have recently started cooking with Celeriac. I read that it is supposed to be really beneficial for people with Colitis. So far I have been adding it with normal potatoes 50/50 to make mash. Not sure if anyone has tried this? Seen benefits? In any case I would love to hear if there are any tips/advice. I can't bare to see my husband in pain, he was diagnosed just after his 30th bday (just over 2 years ago). I want to try and keep him in remission as much as possible.

I'm sorry to hear about your husband Miss it's really kind of you to try to help him.

In my experience it's all about what you don't eat, nothing I've added in to a 'normal' diet has ever helped.

My body reacts to gluten, and to a lesser extent all grains and pulses, as if they're dangerous - my immune system creates huge inflammation in my gut. It's trying to protect me! Just like any autoimmune disease (same with hay fever which I used to get badly, then it went and colitis started instead).

I think it's really that simple, but also that hard, because it needs a very altered diet. Would he be up for cutting out all grains/dairy for a bit?

I meant to write grains/pulses - avoiding dairy is crucial for me as well, but that's a lot to cut out all at once

@fotheringhay

Thanks, I'm trying my best because sometimes he doesn't take it as seriously as he should. I think he's still quite angry about it all.

I've managed to get him to cut out about 85%gluten. Especially bread and things like that. Luckily we don't drink alot, but he will have the odd pint of peroni etc.

We were actually told by his Dr not to go 100% gluten free, be more like 95% because the Dr said that it would be impossible to completely cut it out and then, When it did slip in his body would have more of a reaction. But like I said, he's about 85%.

I doubt he would cut out dairy as well, although I do try to limit it.

He had the symptoms for a year before he even told anyone. We had an awful time during diagnosis as similar symptoms as bowel cancer.

Hello everyone ☺ I was diagnosed with Crohns Colitis in 2007 at the age of 32. My 13 year old daughter was diagnosed with the same in the middle of January this year. She is tapering off Prednisolone, down to 15mg tomorrow, she started azathioprine 100mg last month too. Salofalk 4gs a day and all of her supplements, tummy protectors, etc. She is having a nightmare with infections and on her 3rd course of antibiotics for a persistant urine infection. Constant chesty cough too, although the Dr says her chest is clear. Her liver function is continually off too due to the azathioprine but not by too much, it does seem to be working, so consultant wants to keep her on it. Hope all is well with everyone x

I've had it for about 15 years, the first I ever heard of Chrons was when I was 20 and was told I had it and needed to have some of my stomach removed. It was a relief to find out it was chrons as I had originally been told it was cancer but I didn't realise at the time that it was such a life long disease.

I don't think the doctors in my hospital were very aware of the disease because they even gave me milkshakes to take when I was released from hospital to put weight back on because I dropped nearly 5 stone and was dangerously skinny. I didn't know at the time that dairy was a trigger for it so ended up back at the hospital from drinking the milkshakes.

I've been quite lucky until recently as it never majorly affected my diet as I didn't have to cut anything out that much and although I have symptoms daily it isn't anything major so feels like the norm. But the last few months it has been flaring up and I just wish I could know when (or if) it will return back to normal.

Thanks, I'm trying my best because sometimes he doesn't take it as seriously as he should. I think he's still quite angry about it all.

My advice here missmarple is to tread carefully. It's your husband that has this and it should be up to him to decide how he manages it. I know you are coming from a good place, but this disease takes so much from you that the worst thing is for someone else to tell you how you should be managing it.

If he wants to change his diet then that's great but I'm not sure that I would react very well to my DH telling me to cut out this or that.

I have UC and psoriatic arthritis as well as EDS. Will be discussing biologics this week. I can cope with the other two, but the UC is grim. I spend more on sp now than I did when I actually had periods. So hacked off with having a seeming total lack of control. Cannot leave the house without a compIete change of clothes and even have to have a towel on my car seat.

I agree with treading carefully. I know it is tempting to look at diet and say it must be what you are eating because it is your gastrointestinal system that is showing problems. Maintaining hydration and nutrition is hard in a flare. Lots of fluids and easy to digest soft foods can help.

The truth is that science and medicine does not yet know the causes of IBD. I am not a doctor but I have lots of personal experience.

I am a 37 year veteran of ulcerative colitis. Rest assured I have tried every diet and supplement there is. It is true that some foods can be a problem, especially when the disease is active or flared. Those foods vary from person to person, but overall high fiber or residue food is problematic as it makes the guts work harder. Nuts and seeds, and things like popcorn can be very troublesome especially for some with Crohn's who could have strictures (narrow areas) that could block.

I went gluten free for months and did not improve. Others do. It is individual. I also tried the specific carbohydrate diet, which is quite difficult to follow. Overall, I have learned what bothers me especially when flared. Spinach, for example, is painful and goes through me in minutes. Eggs are good. White bread toast and peanut butter is good (I know, gluten). Chicken soup with rice or noodles. Mashed potatoes. Lean chicken. Mostly things that are easy to digest and not high fiber. No raw veg or lettuce. Well cooked carrots etc. Yogurt and Kefir. Bananas.

I know this seems wrong but it works best. Stressing an inflamed gi system with high fiber etc. really does not work for me..

Hope this helps.

Thanks for your advice and replies, much appreciated.

Yeah, I really do try to tread carefully. I actually can really understand how he feels. I am diabetic (insulin) so I know the frustration of it all. I just want to keep him healthy because he literally is my everything.

It's interesting to hear that different things work for different people. I really wish there was more information available. I know there is a website for Crohns and Colitis but other than that there doesn't seem to be much.

As someone with diabetes I am sure you understand very well. Our loved ones want to help and making suggestions is part of that. My long suffering DH will occasionally slip up when all I am choking down is scrambled eggs and very feebly suggest "Maybe it's eggs?" Umm, no, but good suggestion...

The thing I find hardest is not blaming myself or feeling like the proverbial burden. Believe me, I have run through everything I can think of that I may have done to cause this. If eating only sawdust would help I would do it. I kid you not,

You're so right, I think it's the hardest thing to see someone you love suffer. I am probably guilty of making suggestions to him...but I think there is a massive need to feel helpful. You just want to constantly be trying to find the answer (even if there isn't one).

I also switched to gluten free to help him adjust (although it's not been easy on my own blood sugars). I try to cook all our meals GF and am always on the look out for GF tasty foods. Which at times have been difficult.

I completely understand the burden part of it. I also suffer with migraines and they are quite dibilitating. I feel it myself at times...but it is what it is...

I am just quite sensitive about the number of friends who make "helpful" suggestions. You know that they mean well but I do just think "leave me alone, no turmeric capsules or dancing naked undervalued new moon aren't going to help". I really would hate it if my dh started doing it too.

Hi all. I’ve had Crohn’s for 22 years. It is a shitty (literally) disease. I haven’t been as badly affected as many of you - no surgery so far and my flare ups have been controlled by various medications. I’m currently on azathioprine and hyrimoz (a humira biosimilar), and am the healthiest I’ve ever been. The awful thing about Crohn’s though is you know the good periods have to end eventually.

My DH has UC and like fotheringhay broadly follows the specific carbohydrate diet which is basically paleo enables him to manage his condition quite well. If he cheats he suffers 😔

He avoids grains, carbs and most dairy. He eats lots of meat and veg basically...seems to work. He is a strong believer that the gut bacteria are key...a course of antibiotics really knocked him back as it upset his balance.

One thing...his UC flares albeit relatively infrequent are always accompanied by changes in mood and temper too. I think there is definitely a physical link, not just emotional.

I love this. I tried dancing naked under a new moon and all I got was a bad cold (which probably had nothing to do with the moon).

It was fun though.

Warm thoughts here for all those dealing with IBD and their loved ones. Here's to a night of quiet guts and some restful sleep.

tryingtobebetterallthetime

😂😂😂😂

Oddlookingeyes I'm so glad the same diet helps your DH. I don't know anyone else on it - think it's a combination of how hard it is plus Drs not supporting it. Also logically it wouldn't work for everyone as we're all different. I'm grateful every day that it fixed me.

I've never noticed an emotional link with stress or anything as a trigger, though it's something I hear a lot. I believe it's much more likely that stress/anxiety/depression is a result of bowel disease rather than a cause. I defy anyone not to hate this god awful disease.

to everyone suffering

It is definitely the low mood as a result of the UC flare ...not the cause :)

Yes, the diet discipline really helped in the early days to “reset”.

Specialist here said “nothing to do with what you eat...” DH agreed to differ!

Hello, can I join? Diagnosed with UC nearly four years ago. Been a particularly hard 12 months - two big flares which resulted in steroids. I have put on nearly four stone in 12 months. :( Trying so hard to shift it but it is difficult. My face has completely changed - just don't recognise myself in the mirror any more.

Also now being investigated for arthritis and battling a lot with fatigue. UC is a horrible horrible disease.

Hi, UC here too. I'm just coming out of a moderate flare after a period of remission. I'm starting to feel human again! My flares seem to be related to me being ill first maybe due to low immunity, or being stressed.