Struggling with crohns

[FFS123]

I've had crohns 9 years. I'm 46 years old. 2 children aged 4 and 7. No family history of crohns.

Since I first got ill I've been on prednisolone then infliximab then aza. Stayed on aza for 5 years. Came off it due to a reaction and had 18 months without any medication. Been in a flare again for 18 months. Tried infliximab which didnt work. Been on and off prednisolone. Tried a new antibiotic treatment called A-MAT which didnt work. Now on imraldi. Had first dose x 4 and second dose x 2. So now at 3.5 weeks since started. Diarhea bleeding and mucus gone but lots of pain and I'm still losing weight and have no appetite. I can basically eat veg and maybe white bread and that's it. I'm overweight so can afford to lose the weight but it's not ideal.

I'm told imraldi takes up to 12 weeks to work. Anyone been at 3 weeks and then its started to work after that?

I cant get an appointment with my consultant on nhs until I've been on it 12 weeks so I've booked an appointment privately for 6th jan..I'm sure it's not working and now I have to wait the 12 weeks to be sure and then what?

I have no energy at all. I'm feeling very miserable and occasionally just wish I wasnt here any.ore except my kids need me. It's been 18 months and I'm worn out of the pain and feeling crap.

My daughter asked my mum if she could speak to Santa to see if he could help mummy. My heart breaks. I feel such a useless lump. I'm always tired or on the loo.

When I was first ill I was bed bound for 4 months but that was before kids. But since then I've had years of being fine on medication until the last 18 months.

Now I seem to have arthritus in my hand and episcleritis aswell.

I just feel so miserable. When will this end. When will I get some medication that works or maybe there isnt any and then what? Is it normal thr crohns gets worse as you have it longer? I was so desperate to be off medication and now I just want something that works. I know my consultant will want to persevere with imraldi as she says you cant dismiss a drug until you've tried everything with it as there arent limitless drugs. So will I go on something else as well?

Cant believe I used to moan being on one drug even though I was grateful it worked. I'm having a pity party . Why have I got this shitty disease.

Hi,

I am so sorry you have Crohn's and that you are feeling so bad. I can relate. I have had ulcerative colitis for over 35 years. IBD totally sucks.

I have been in a pretty good remission for a couple of years on Entyvio. Just like you, I was desperate for something to work. I had also completely had it with prednisone and its evil side effects.

Entyvio didn't work right away. It took probably 4 months before I stabilized on it. Also my GI doctor increased the infusions to once a month instead of every 2 months. Also, things improved slowly.

If your doctor says it takes time to work, stick with it. You might find yourself feeling lots better in a month or two. It sounds to me from your symptoms that you are improving.

Hang in there. It will get better. I know how desperate you can feel. I have been in the bathroom crying many times.

Don't push yourself too hard. Fatigue is part of IBD and you need rest. I believe that if you rush around trying to ignore your disease, you just encourage your immune system to ramp things up.

Try to eat a lot of protein for healing. Kefir smoothies helped me that way.

I hope you feel better soon.

Lovefall thanks for your kind response.
My parents have been around for 10 days to help with kids and I've done nothing but rest and feel better for it. I just feel so guilty to everyone around me that I cant do much.

You've given me hope this medication could work for me. When I started infliximab 8 years ago it worked instantly and I was hoping for the same. But your right and I am improving.

I'm really struggling with oral thrush. I got it from the antibiotic treatment I tried and am on medication but it just wont go. I've got my 3rd dose of imraldi tomorrow and will take it because i want the crohns to keep improving but my mouth is uncomfortable.

I'm learning that I need to build rest periods into my year. It's very hard with 2 young children. I'm also separating from my husband next year which is stressful.

Thanks so much for taking the time to reply and giving me the positivity I needed. I was taking turmeric and kefir etc but stopped a few months ago because I lost heart but I've started on it all again today.

Happy new year.

Hi I’m sorry you’re so poorly. My mum had crohns all her life - she was diagnosed with it at 13. She did have several bowel resections when it was at its worst so had a very severe case of it but really couldn’t take any of the immune suppressant drugs, she tried them all and like the things you mentioned all they did was give her terrible thrush (which is common when your immune system is low) and make her feel super unwell. In the end she fought with the consultants and they just agreed to keep her on a higher dose of prednisone for the rest of her life. She would adjust it according to how she felt. Everyone warned her she would have issues with her bones and she did have regular bone density scans but they were fine. She did develop adrenal insufficiency because of the steriods (which I have myself due to other reasons) so she needed to manage that but the steroids gave her a quality of life that nothing else could. She also took tramadol for pain. Co codamol when she had upset stomach / the runs (!) as the Codeine helps to stop this.

I hope you manage to find something that works for you.

Oh I can't read and run I don't have experience but my mum and 2 siblings both have ulcerative colitis so I know what it was like growing up with it. Mum and brother have both had surgery.

Have you seen if there is a local NACC group near you? Mum used to find that helpful because she made friends who were sharing the experience. Unfortunately her local group closed but there may still be others.

Hope u feel better soon x

Couldn’t read and run either. So sorry you’re feeling rubbish and cross fingers for an improvement soon. I’m 43 - three kids. Had crohns since 13- not diagnosed until 29 with an emergency resection. Just off steroids and struggling. Soon to start aza for first time. Bit wary with covid and all that but too ill without it. WFH is a struggle whilst juggling home schooling. Luckily DH is able to help but I can honestly say- it sucks. Being so ffricking tired when you want to bounce around with the kids. The horrible unnecessary guilt. The only thing I can say is that is does get better - it goes in waves and a better wave is always on the way 💐 hope you have a healthier new year

Derdu thanks for your comments. Our situation sounds similar. I was on aza for 6 years and had no crohns symptoms. I couldnt cope with being in the sun as my skin felt like it was on fire but that was manageable. Good luck.

I paid for a private consult after I went in to a&e 2 weekends ago as I felt so bad. They didnt have the gastro doctors in so sent me home. My crp is 107 and just going up and up. I then had the private consult and dr said imraldi isnt working. Anti tnf no longer working for me as my stupid body rejects it. I'm starting on anee drug thursday called erstakinamab. Consultant said 60% chance it will work. I'm back on prednisolone too so that I can at least walk around and do some work.

I have a really bad feeling abòut thursday that the new drug wont work for me. I dont know why I'm feeling that but maybe just despondent.

I'm separating from my husband this year and been thinking I should wait until I'm well but now I'm thinking we should just sort it as the stress maybe causing the crohns. Mainly I'm finding sharing time with the children is killing me. I've never even had a day without them.

Consultant went through other options and 2 others involve steroids whilst tablets kick in but she worried about the thrush. Last option then is a resection. If you had mentioned a bag to me 2 years ago I would have been horrified but now I think whatever it takes to feel better.

I'm so sick of being stuck at home, in pain, watching my kids rather than playing and struggling though each day.

Hi I just wanted to list some possible drugs that may be an option for you (all approved for Crohn's):

Adalimumab
Vedolizumab
Ustekinumab
Methotrexate
Mercaptopurine (sister to Azathioprine)
Certolizumab pegol

How are you getting on OP? x