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.

Not me but I seriously suspect DH of having one or both. It’s grim.

I have UC and I know the feeling. No real words of comfort other than you're not alone.

MatthewBramble thankyou, that’s all I wanted to hear really as I do feel very alone with it. DH is amazing but I do wonder what on earth he’s doing with me. I feel so unattractive with it. I’m actually in remission, this is just classed as my ‘normal’. I have had a lovely day but it can never just give me the whole day, it’s as if it sees me having a nice time and has to swoop in and fuck it up.

Me. I have crohns. Since I was 18, 41 now. It was seriously active all throughout my 20s and I know exactly how you feel, excessive bathroom visits, waking me up 2/3 times a night, severe cramps, infections and hospitalization which resulted in giving birth and collapsing immediately after, going into septic shock and spending a week in ICU. I've had over 30cm of small bowel removed and appendix. And since, although it's not cured it's much more manageable.
I understand everything you are going through op. It's a really soul destroying disease.

I don't mean to sound flippant but the answer is to "learn to live with it". I'm in remission like you but I know that at some date in the future my body below the waistline is going to start doing horrible and unpleasant things. When that happens, I'll live with it and deal with it. Until then, I'll forget about it.

It works for me. That's all I can really say. Non-UC time IS normal. The UC spells (inc. being hospitalized) are the times that aren't.

Not sure if that make sense, but keep hanging in there OP.

Me! I have UC.
I'm in remission too, but suspect I have bile acid malabsorption. Trying to push for tests!

Thanks everyone. I do cope well with it most days, I’ve adapted to it. I’ve managed alevels, a degree, I’ve got a good job (albeit part time), husband, DC. I just want to scream sometimes for it to just leave me alone!! I find it so bloody boring!!

Sending health and happiness to you all 💐

My son was diagnosed with severe UC when he was 8yo. He never has any symptoms, and I'm hoping it will stay that way! I think the issue with him is that if he gets a flare up they can't stop it? He takes quit a bit of meds, oral and injections.
I have a feeling once he hits mid teen it might rear up. But I'd rather he had a stoma than lived in misery, unable to enjoy life.
Did any of you have symptoms at his age?

Mine started when I was 16. For me, the first 10 years were the worst because they just couldn’t get it under control. I’ve had it for 22 years in total, been in remission for 12. Wishing your son all the very best.

DH had UC, it was miserable.

7 years ago he had his entire large bowel removed, had a stoma for 6 months, then had reconstructive surgery to make an internal pouch.

It was a drastic step, but his quality of life has increased 10-fold.

He still has to watch what he eats to a degree and has to get up during the night as the pouch is quite small.

Me, sorry to hear it's affecting you so badly right now, it's a bit like childbirth, you only remember how bad it is when it's back! Drink tons of water (not sparkling) and try do some exercise/ de stressing (hard I know). Thinking of you xx

Thanks everyone. Aren’t we lucky to live in a time when you can reach out for support from your toilet and get it instantly 😄

I had UC for 3 years and then gave up the unequal battle with my colon and had it out. Was the best decision, well not much of a decision as it was a you need surgery, you’re having it in two days time. That was 14 years ago now.

I have crohns OP, and I sympathise. Never going anywhere without numerous trips to the toilet, and every joint in my body aching. It's shit. Literally.

I have Crohn’s. Yes, it’s shit (often literally). I’m in remission now after being on humira for a couple of years, but the flares are awful. Try and treat yourself gently; rest as much as you can (difficult when you have family, job etc, I know). Can you try and get an emergency appointment with your consultant if it’s worse than usual?

Sympathy for all of you C and UC sufferers, a close relative has it and I know how tough it is from them.

Bookworm14 is humira available in the UK under the NHS?

Cheeseandpineapple Yes it is (although I’ve actually just been switched to a cheaper equivalent drug to save the NHS money).

www.nhs.uk/medicines/adalimumab/

I have crohns too OP and I get you.

I have flare ups, not often thankfully, but it has caused a stricture which gives me daily symptoms so it affects me all of the time and I hate it.

I don't see how you can learn to live with it when it affects everything that you do. If I didn't need to work, go out or socialise with anyone then I guess I could live with it but how can you do any of those things when you know you might need to find a toilet urgently at any time?

My son is on Humira too, we haven't received the new injections yet. There was a piece on the BBC News website today about a guy trialing new treatment for Crohns,I'll see if I can link it.

you can reach out for support from your toilet

TMI, OP. TMI.

Here.

Have no advice OP I hope you can enjoy the rest of your evening.
Timing of this post is very interesting for me, so I hope you don't mind me following. I've had symptoms for approx 4 weeks, not as severe as you are describing but some that means I will be trying to get a doctors appointment on Monday. Can currently sleep for England, just woke from a nap. Do you get excessively tired? I had a sidoscopmy 12 months ago and all clear then but have worse symptons this time round. Can the condition settle / flare up like that?

OP and all, my sympathies. My DH has been suffering a flare up the last few days and is wedded to the toilet.

Belle your comment about excessive tiredness - ask your UC Consultant about this specifically linked to UC and your bile ducts. DH has a linked with UC Bile Duct disease that causes fatigue.

DP has crohns, it's rubbish. He's run down and tired. He has taken everything under the sun for it, and is only 21. His body developed antibodies to humira and it stopped working, he now takes Stelera, but it was more of a drug trial, and is about to try a new drug I think.
His skin is really bad and he's covered in eczema, he has to watch how much he drinks when he goes out with his friends otherwise he'll poo the bed (sorry DP). I feel so sad for him having to constantly go to the toilet, no idea what other drugs he can take if humira didn't work and if stelera hasn't either.