Anyone else here with Crohns/UC

[Freshia381]

I’m so fucking fed up. Another evening spent on and off the toilet while DH and DS are enjoying eachothers company downstairs. I’m exhausted and bored of it and it’s not fair.

Thanks Polly, the last month has seen a change in my regular pattern and once/twice a week passing blood clots. I'm 29 and just run down painful mouth ulcers etc too. Assumed I was too young but seeing on this post it's quite sad to see others much younger suffering like this.

@Belle89 yes, IBD does flare up. You can be symptom free for ages and then boom! It comes back.

I have Crohn's too. Diagnosed at 21 now 42. Tried various medications but Azathioprine was eventually the one that helped. I wouldn't wish it on my worst enemy. Apart from the usual diarrhoea, mouth ulcers and pain I also had a lovely abcess in my bum.

It’s exhausting isn’t it. The thing that gets me down is not having a break from it, just a day off would be nice. Being ill (to varying degrees) every single day for 22 years takes its toll.

Much love to everyone on this thread. We’re all made of tough stuff!

DH has UC- was diagnosed 20+ yrs ago- he is on Azathioprine - that was the one drug that has turned it around for him. Has been on it for around 15 yrs- before that he had a hell of a time- he went from 12st to 9st shortly after DS was born 17yrs ago and ended up housebound for around 3 months.
Mostly under control now but when we go anywhere always look for the loo first and get late afternoon flights if we go abroad or do any travelling -no journeys at 6.00am in this house - works 2 mins by car from home in an office job too with instantly accessible toilet! (early am always the worst for him!)
It is utterley crap and I feel so sorry for you - if you are not on Azathiprine speak to your consulant- it is not for everyone and you need blood tests every three months/colonoscopy every three years and he also has b12 injections/calcium/vitD supplements as well. But he is much better that he was and it has been a sustained improvement. PM me if you have any questions I'm boring myself now

Look up the Specific Carbohydrate Diet, developed by a woman called Elaine Gotschall. Her book is called "Breaking the Vicious Cycle." Look it up on Amazon and read the reviews; many Crohns sufferers have found relief by following the diet

Thanks Bookworm good to know.

My relative had surgery and continues to take humira (not in the uk that’s why I was curious) but what seems to have made the most difference (positively) is using a bulking agent twice a day.

Wishing everyone all the best, it’s tough to live with, hope you’re all able to find treatment that works for you and keeps you in remission as long as possible.

mrsfollowill thanks for sharing, it was azathioprine that pushed me into remission too however I came off it to get pregnant. Maybe it’s time to go back on.

I’ve had a look at the SCD. I found it impossible to follow as it was so restrictive. I think as my symptoms are getting worse it’s something for me to revisit and try again as it did help for the short time I could manage it for.

I'm remember the bad times really well . I take azothiaprine, infliximab and Pentasa. That combination has kept me in remission for nearly 5 years, happy days!. I do have the constant dread of the return of symptoms and the hours spent in tears of pain and exhaustion as well as the constant trips to the loo. Crohns and colitis UK offer good support and I also follow a blog So bad ass, very sound, warts and all support and advice from a U.C sufferer. IBD sucks! but we can conquer, take care love xxxxx

I have been looking at the special carb diet - that looks quite tricky but I guess you get used to it! He does like to have seaweed but that’s off the menu and bread/rice/pasta? Do you need to eliminate these things completely? I make bread and he loves that for breakfast - or porridge!

DS has had UC since he was 6. Azathioprine and Pentasa are really working for him. Sorry you're suffering OP.

As an aside. Is anyone else doing that Predicct study?

Crohny here too.

21 years worth 😕💩 currently on vedo infusions.

Am ok, not great but ok and I’ll take that. I’d love not to have almost constant hip pain (yup arthritis is a lovely side effect)

I work, part time, 1DD and DH who works away a lot. I’m pretty lucky overall tho as I’ve got some fab support.

2 resections, one bag (not for life it was reversed) currently waiting for a dialation.

Marvellous I had never heard of that study. Just googled and going to sign up for it. DS is in clinical remission UC.
Thanks!

I would also second aziothiaprine (although it takes about 6weeks to kick in, and those 6 weeks it makes me sick as a dog!) and there are good specific carbohydrate cookbooks on amazon too. I have one safe for my next flare up... to me diet and stress are the main triggers. Definitely drink tons of water though- although I may be totally wrong and paranoid with this... I avoid tap water.

I have UC and I get you OP, it can be fucking miserable, I too feel very unattractive with it, nothing sounds as glam as a middle aged woman sitting on the loo for hours while going through the eye of a needle and yes, one bloody day without worrying where the nearest loo is or if I can eat ANYTHING in a restaurant without being up half the bloody night would be wonderful!

yes, I have learnt to live with it, it just gets so fucking boring though!

Oh good Eleanor. Every person on it helps!

Can someone help me by explaining how you live with this day to day?

I've had to change my job because I've developed arthritis (thanks crohns!!) and the job now means that I can't get to the toilet when I need to.

I've "managed" it so far by not eating and taking industrial quantities of imodium but that then causes a lot of pain. Now I'm in another flare and have been off sick for a while but due to go back soon. I don't think I can cope any more. But I have to work.

How do you all cope with stuff like going on trains where you don't know where a toilet will be if you need one?