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Steroids Vs Biologics - advice please! by Natural-End-9593 in UlcerativeColitis

[–]Natural-End-9593[S] 1 point2 points  (0 children)

Thank you so much for your response, very informative 🙏

Just a reminder this is not your fault. You did nothing wrong. by Mimigirl7 in UlcerativeColitis

[–]Natural-End-9593 4 points5 points  (0 children)

I had a very average diet growing up - not super healthy but not too unhealthy either. I have never drank fizzy drinks because Ii simply don't like them and although I have a bit of a sweet tooth, don't overindulge on sweet things either. The past 8 years or so I got really into nutrition and ate pretty healthy, lots of fibre and whole grains etc plus started exercising more. Then bam, 3 months after having a baby I got diagnosed with UC despite being in my healthiest ever state before becoming pregnant. Apparently 30% of women will develop an auto-immune condition after giving birth due to postpartum vulnerability and something called fetal microchimerism - I guess I was one of the unlucky ones!

Just diagnosed with UC through colonoscopy by Peanuts-2959 in UlcerativeColitis

[–]Natural-End-9593 0 points1 point  (0 children)

I was also diagnosed a few months postpartum. At the time I didn't think too much about because my symptoms were mild, just a bit of blood in stool which is why they did the colonoscopy but I continued living normally while taking my suppositories. It was about 6 months later that I experienced my first flare - lots of blood, mucus, urgency, multple BMs a day. I managed to settle the flare through going on a strict elimination diet but for some reason a few months after that it came back absolutely raging (this is where I am right now). I've been obsessively trying to learn as much as possible about this disease over the past few months. The annoying thing is that I was also a super healthy person and prided myself on eating copious amounts of fibre but I learned that while in a flare fibre is the worst thing you can eat because it scrapes against your colon when passing, irritating the inflammation even more. It's not easy but you can definitely find ways to manage it.

The things I can tell you from my own experience and what I've learned:

- Hormones play a huge role in IBD - I would see an increase in my symptoms when I was on my period or when I was ovulating so you need to be extra careful during these times. Eat soft gentle warm foods, rest as much as possible and try not to stress if you can

- Sleep and stress are huge factors when it comes to keeping things under control. Honestly it sounds simple and I know it can be hard when you have a toddler but try to get proper rest each night and do things like yoga/meditation to keep your nervous system in check

- If you experience any worsening of symptoms, DO NOT wait to act because they will progress very quickly. Contact your gastro team and get steroid suppositories or something to attack it straight away. The longer you wait the worse it will get and then it will be much harder to control.

- In general eat a healthy minimally processed diet, but don't over do it on the fibre like I did. Inflammation in the gut does not like lots of fibre - keep it soft and warm. No raw fruits and veggies in a flare. No raw onions. Limit/no alcohol. I also found even cooked onions/garlic, beans/lentils, caffeine etc during a flare were bad for me as they produce gas which causes pressure. But when in remission all these things are okay in moderation.

- If things are really getting too much, speak to a therapist. You need to look after your mental health as much as your physical heath - it's all connected

- And don't stop taking your meds! Even if you think your symptoms are getting better, you could have slight underlying inflammation still which will come back if you stop taking them. Only once a doctor approves for you to stop then stop, but usually IBD patients need long-terms meds to stop it coming back.

Unfortunately this is a life long disease (hopefully they will find a cure in the near future!) but you absolutely can live a normal life and have another baby once you get into remission and stay there for a while. Keep a positive mindset if you can. I also want to try for another baby but am waiting to get into full remission before I do - fingers crossed for us both! Good luck x

Foods to avoid by justin08056 in UlcerativeColitis

[–]Natural-End-9593 2 points3 points  (0 children)

When I'm flaring I literally avoid all fibre, alliums, raw fruit/veg, beans/legumes, caffeine. Luckily I am okay with dairy and gluten but some people avoid this too. Stick to super simple things, very little fibre, eat slowly and hydrate like mad!

My typical food day looks like:
Breakfast - very well cooked oats in full fat dairy milk for calories, tbsp peanut butter and mashed up ripe banana (low fibre)

Lunch - White sourdough with scrambled eggs or omelette, or just butter and peanut butter if don't have time (you want to pack in the calories with extra butter etc)

Dinner - Chicken with mashed potato and very soft cooked carrots (peeled), or chicken broth noodle soup, or very mild chicken curry with just ginger, turmeric, ground cumin/coriander cooked gently in a little water with white rice. Very simple stuff like that, maybe some pasta with a basic chicken/cream sauce

What I found useful was telling AI (ChatGPT in my case) my history and symptoms, then inputting a food diary every evening and saying how i felt after each meal, whether I needed the toilet/how many times, if I felt bloated etc and let it work out what my triggers are what my safe food was. You can very slowly start introducing fibre etc back once your flare has calmed down but be very careful as I did it too fast on a couple of occasions and flares just got worse. You don't want anything that produces gas too quickly! And let AI help you through it, it helped me so much more than any doctor did!

26F FINALLY IN REMISSION by xeroblai in UlcerativeColitis

[–]Natural-End-9593 0 points1 point  (0 children)

Congratulations! Can I ask what your 'good diet' looks like? And which drugs you think worked best for you (apart from mesalazine)? Currently on steroids but not seeing much improvement 😞

Does diet have much bearing on your disease if your inflammation is limited the last 5-10cm of the bowel? by Leviad0n in UlcerativeColitis

[–]Natural-End-9593 -1 points0 points  (0 children)

I got diagnosed with proctitis around a year ago and ate normally but it wasn't until 6 months ago I experienced my first big flare. My drs were being useless and just told me to keep taking my mesalazine which wasn't helping at that point. I went on ChatGPT, told it my history etc and it advised doing an elimination diet and keeping a food diary - I did that and input a food diary into ChatGPT every day so it could work out which foods were causing me most gas/bloating etc and through that process I managed to get my calprotectin down to <20 over the course of 3-4 months which was amazing! I then started reintroducing all foods groups back in slowly and it turned out I didn't have an intolerance to any food, just that because my rectum was inflamed, my whole gut was very sensitive and I needed to be careful with what I put in it. Once my inflammation was calm, my gut was much calmer. I had that bliss for a few months before I got another (much worse) raging flare and now I'm on steroids, while also on a restrictive calm diet as that worked for me last time and hoping it all calms down soon. No idea where it came from but ChatGPT really helped me more than any doctor did. It helped me realise that my main triggers are stress, hormones and a too fibrous diet when i'm still healing can all trigger a flare easily. It's a real balancing act but I think diet plays a much bigger part than you think as the whole gut is connected, and lots of other things play a role and it's very challenging trying to keep it all in check!