Doctors letter

[Pte12]

Just received a letter from my crohn's doctor my poo sample has came back raised at 1800 my blood tests have shown I'm very anaemic they're going to start me on ustekinumab any advice please fellow chrons sufferers

[012703060610]

While I a not on the medicine, I have a friend who started this about 3 weeks ago with an IV session then weekly injections. She has been on other immunosuppressive drugs that didn't work or a biologic. I know the stats seem very promising on the med. It will take some time but it looks like just short of 50% of patients treated achieve remission in a year. Then another 40% achieve by year three. I have discussed this with my Rheumtologist and GI doc as they need to work together. We try to find one drug that can treat my three autoimmune conditions but that isn't possible. I am stuck in a methotrexate rut! I guess this med doesn't seem any harsher than other immunosuppressants. From a side effect stand point, my friend struggled a few days after the IV was given. She heavily modified her diet to keep things gut friendly. She needed to do this anyway as her eating was causing her own flares.

PS-have you read about LDN for Chron's? I shared the link below with my medical team and I started LDN about 4 months ago I think. It has caused great improvement with my flares. Just a thought as the side effects are very little.

ncbi.nlm.nih.gov/pmc/articl...

[Pte12 in reply to 012703060610]

Thanks very much for your reply just feeling very poorly at the minute it's getting me very low and really low and my family keep telling me that I should go our more when I don't even feel.like getting dressed most days

[012703060610 in reply to Pte12]

Yes it is very hard for our loved ones who don't suffer chronic illness and pain to understand. The demands of these diseases are relentless. I have sadly found that in this time of need for me, so many people run. My circle is quite small now and that is depressing on its own. Add on the issue that we don't know how to handle our body everyday, we just can't be reliable on plans or trips or other activities. You can't drum up the will to go sit through movie if you're worried about your health. No joy on getting out just to check a box. I literally found myself accomplished because I was able to be outside fro about 30 mins yesterday. Small win for me.

[Pte12 in reply to 012703060610]

This morning I'll be going to church then may come home to make some lunch or I might order a Sunday lunch from Toby carvery that's my goal for today I don't make any huge plans anymore if I ever go away I do it when I'm feeling well and book things at the last minute hope this new treatment manages to put me in a period of remission

[012703060610]

Will be praying for you! Agree, small steps.

[Pte12 in reply to 012703060610]

Thank you very much just know that by 5 or 6 pm I'll be shattered as per normal

[Aishwarya_73 in reply to Pte12]

How are you feeling now, I am currently having a flare, don't know what to eat and having tummy cramps