What to do now?

Hello all.

I posted some weeks ago about my situation, but I will quickly recap. I have been in a flare since last December, and was diagnosed with UC (at least left hand sided, probably pancolitis) in June. I have tried Pentasa, steroid rectal foam, and I have been on prednisolone between 30 and 5mg consistently for the past three months.

A month ago I started azathioprine, while still on pred, but I was also told due to my long term bleeding my iron levels were very low and was advised by two GPs to try oral iron tablets. After 3 days of that I began to feel very sick, even after stopping the tablets and eventually began to vomit uncontrollably and was hospitalised for 2 days with suspected gastritis. I have since stopped all medications except pred at 10 mg. I have now been advised to try remicade next but I really don't think that my condition is bad enough to warrant it (yes I am in pain every day, bleed with pretty much every bowel movement, but surely there must be a less drastic option?).

I have requested an iron infusion to solve the anaemia, but have been told by my IBD nurse in terms of medications there is nothing I can do until I see the gastro consultant (which, judging by previous experience could be weeks, if not months). So here I sit in limbo, fantasising often about ending my own life - I really can't see a clear way forward. I am told this is a disease of flares and remissions but for me, it has just been one consistent unending spell of ill health.

If anyone has any ideas I would be appreciative.

Thanks.

Just wondering if you have tried any of the suggestions mentioned in your first post ?

If the other meds aren't working you should give the biologics a try. Get in touch with your GI and get an appointment so you can decide which one is best for you. There are a lot of people here who have had great success with remicade. Once you can get this flare under control it will go a long way in improving your state of mind.

Make the call and see if you can get your IBD nurse to help you get a fast appointment.

Hang in there!

IMO, the problem was the oral iron. They are nasty. They will make you cramp and vomit.

If you don't want Remicade, you should try the azathioprine again. I think you stopped it for no reason if the problem was iron. Some type of thiopurine drug is recommended with Remicade anyway.

It would not hurt to have some counseling about living with chronic illness.

Good luck.