I have reached 10th week since I’ve spotted I’m flaring. It could potentially started earlier on. I haven’t just seen it earlier. I’m still not in remission, but I feel I’m getting there.
As always I would like to remind, all my posts about IBD, in this specyfic flare up case Ulcerative Colitis, are personal experience. I share it here to help others and as I feel strong link to Crohns and Colitis community.
My current situation is that I have improved. I’m taking a lot of medication this time. I was really worried on discharge from hospital that was 2 weeks ago as I felt actually worse that when I was admitted. But after a week at home, so last Monday, I started feeling it settling down. I still don’t want jinx it as this flareup was 2 steps forward, one step back. It’s definitely not remission yet, but most of symptoms gone or slowly going away.
Medication I’m currently on
(1) Prednisolone (2) Adalimumab (3) Mercaptopurine (4) Allopiurynol (5) Mesalazine tablets (6) Mesalazine enema (7) Budesonide (8) AdCalc
For those who interested about dosage etc. (1) I’m taking prednisolone since flareup started. First 30mg, then 40mg then stop for time being in hospital as I was on hydrocortisone injections and then again on 40mg after discharge. How I said before I don’t think it helped a lot and I think I’m steroid refractory even IBD team thinks not yet. It gives me loads of side effects and I couldn’t wait when dosage go down. I supposed to drop dosage every 2 weeks, but because I’m improving doctor gave me some other option last Thursday. If I feel I’m improving and I’m really on safe side of going toward remission, I’m allowed to drop 5mg every 5 days. So I have only just dropped it to 25mg and fingers crossed I’ll stay on track of improvement. (2) I have started adalimumab 5 weeks with loading dose of 160mg, then I have received my 2nd 80mg dose in hospital 2 weeks later. As flareup was really severe they have decided to increase my dosage from 2 weekly to weekly. So my regular dosage of 40mg I have received after discharge in day unit, followed by my 4th dose. Last week I received self injecting pens so I have administered by 5th dose myself at home. (3&4) I started taking also very low dose of mercaptopurine 25mg together with 100mg allopurinol every other day. I don’t really understeand why this dosage is structured this way. I do take azathioprine or mercaptopurine with allopurinol as I have thiaguanine nucleotide issue. The topic is long and complicated so I won’t be explaining it now. The reason why I been put on mercaptopurine is to give greater chance to adalimumab to work properly. And seems it does work somehow even it’s far too early to see benefits of mercaptopurine as it’s at least 6 weeks before it start working. (5) I keep taking Mesalazine tablets as I do past 10 years. Nothing new or exciting here. (6) Oh this is hard one. Mesalazine but one that go to… Other end. Take time to master it. Reson I’ve been prescribed this is to resolve flareup in most affected part of colon. As other meds work overall, enema targets the last bit of it. As I was keep passing fresh blood it was probably the best choice to target it directly. (7) Same purpose is of rectal foam steroid. This one is bit easier to administer. As I passing now little to no blood at all, I’m assuming it does the job while rest of meds working hard to put me to remission and improve muscosal healing. (8) Calcium supplement you should always been given with steroids, as those bad boys weaking your bones.
So just to summarise. I do feel better, but very far from my usual. I’m taking loads of meds that only just started working and I hope they will continue to do so while I’m reducing prednisolone and be able to funcion back again. I’ve lost about 12kg, yet I’m very puffy from prednisolone water retention. I also eat like a wolf as it makes you constantly hungry. Levels of iron, sodium and potassium in my body hit bottom. I’ve lost most of my muscles and strenght.
I will make further updates on how this flareup going and if I finally achieved remission. But I want this post to be form of closure of me being seriously ill so I can move to recovery and start my second journey for health.
Stay healthy, Vic