Help/Advice

This has probably come up a 1000 times on this forum but I am just looking for anybody who has been in a similar situation. I am currently in limbo with my UC - I am not very sick but I am definitely not in remission. The uncertainty is nearly worse than any of the symptoms.

A brief background - I was hospitalised in April for 2 weeks and started on Remicade. After being released from hospital and on Pred I never really improved and ended up being admitted again in May. I was started on Imuran (100mg) along with the Remicade and noticed a huge improvement.
I managed to taper off Pred over June/July and only had the very odd symptom of Blood or Mucus. When I went for my 5th Remicade infusion at the end of July my Neutrophil count was low so they took me off the Imuran. After this my symptoms slowly started coming back. I was having 5/6 BM a day with a lot of mucus and some bouts of D.
2 weeks ago my GI put me back on 30mg of Pred to taper 5mg weekly and last week I was put back on 50mg of Imuran as my bloods have improved. I had my 6th Remicade infusion 3 days ago but still have the same symptoms. 5/6 BM, some mucus, some blood when I wipe, some D along with some formed stools.

My question is, and I know there is no answer to this, do I just continue and wait it out?? I am not getting any better but don't think its getting worse either. Some days are better than others and I think I am making progress and then some days I go backwards. I can function in work etc. but its no way to live, I've had to cut back massively on my own training etc. I've spoken to a surgeon at my GI's request but I want to avoid if at all possible. Its very hard to get anything out of my GI, he is pretty much of the opinion just wait and see.

I've tried the SCD diet, Boswellia, Curcumin, Butyrate among many other things but its hard to tell if they had any effect at all.

How long would the imuran take to kick back in?? I have only been back on 5omg dose for 10 days......

Bit of a pointless post with questions I know can't be answered but I feel like my life has been on hold for 6 months and I am looking for some direction.

Thanks iPoop.

I was worried that Remicade was the final straw with regards Biologics. I thought I had read that if that fails it is more than likely most others will. I overheard the nurses at my clinic saying a lot of people were now being put on Stelera??

I was hoping the Imuran would kick in quicker as I only stopped it about 4/5 weeks ago but that is good to hear it may take 6 weeks. That means there is still hope of improvement.

The nurse mentioned getting my Remicade levels checked this infusion but it never happened. I will push for it again before my next scheduled infusion on 1st Oct.

Thanks as always for you input iPoop.

Thanks notsosicklygirl

I should have elaborated. I am on 3.2grm of asacolon daily. I use Salofalk enemas on and off when I feel it is mainly in my rectum. I had a scope in April that showed mild inflammation in my rectum but more severe inflammation on the right side of my colon. The rest was clear. For this reason they haven’t ruled out that it is Crohns. They said all biopsies point to UC but because of the location of the imflammation it may be Crohns. The surgeon told me they basically won’t know until they remove it. So I could wake from the operation to be told I am left with a permanent ostomy that can’t be reversed if it is Crohns.

I have had a stool test done last week through a clinical nutritionist I have been seeing and am meeting her next week for a consultation. The only info I have off her is that my calprotectin levels were very high. This was done before I went back on the Imuran. It was a full diagnostic stool test that was sent to the states so I am hoping to get some good feedback from it.

I’m hoping the imuran takes effect soon. I never felt I got much relief from Pred and the side effects are a killer. I have a young family and my main concern is to be able to provide and care for them so it is a massive worry to me. I know many people go on to live full and great lives with an ostomy and if that is my faith so be it but if I can get this under control and manage it then obviously that would be ideal.

Hi countess18

Thanks for that. I am currently getting infusions every 5 weeks but I think I am only getting 5mg/kg bw so maybe there is scope to increase that. I agree, I feel I am a bit away from surgery yet however my doc insisted I meet the surgeon last time I was admitted. He was of the impresssion “if not now than later”

Hopefully it won’t come to that. Best of luck with your treatment.

I was dx about 4 years ago but never had any medication. Only treated minor flares with salofalk enemas maybe 2/3 times. to be honest I never treated it with the seriousness it deserved as it never affected me that badly until this year. I guess I was ignorant to the nature of the disease

Post Edited (Irishguy10) : 8/31/2018 8:59:22 PM (GMT-6)