On steroids still not well.

[Kathy6]

I have been in steroids for a month now and the bleeding has just stopped I started at 40mg and am down to 20 mgs. I have in my back and pain on my lower right hand side at the front. It is painful to touch and feels lumpy. Is this a serious sign, I know the bowl can weaken and split. My ulcers are bad in my mouth again.I have been told by the specialist that they are going put me on injections in my stomach, not looking forward to this. I'm a little worried I'm going to end up having an operation.

[Foyer]

In my experience, bleeding can take a while to stop. Prednisone can really help, but it can also be tough to come off of it. Make sure you follow your doc’s advice and don’t back off of prednisone too quickly.

I know injections aren’t for everyone (and I was also afraid of starting them) but I’ve been on them almost a year and it’s helped the quality of my life a lot.

Be sure to get some extra rest and try to be really kind to yourself. I truly hope you’re feeling better soon.

[Hidden]

I can totally understand how you're feeling, I'm going through something similar. I had 2 courses of steroids and my bleeding hasn't stopped. They tried me on Mercaptopurine but after 9 weeks they stopped it because my liver was consistently inflamed. I'm now waiting to start Infliximab at the Hospital. I also worry about surgery (if the Infliximab doesn't work) and even though I'm aware I'm not really offering you any advice, I though it may help you to know that you're not alone. Sometimes I've felt very alone (I've been in this flare for 1 year now and it feels like it's never going to end) and this site gives me a lot of support. Some people are very poorly and some in remission and doing better but I think we all know how it feels xx

[Kathy6 in reply to Hidden]

I know I'm not as bad as most and I just worry how bad it can get. Everyone looks at ne and says you look well. But they don't see all the tabs I'm taking and I know its always there and I don't feel right, I'm determined this illness isn't going to define who I am. I just want to get on with my life and forget about it. I've just started a new job and I'm enjoying it but worry I wont be able to keep it if I get any worse.

[Hobbits in reply to Kathy6]

I’m not at a new job. But tired of explaining. Now I just take a sick day for infusions or procedures. When those paid sick days run out, I will use vacation days, so I don’t loose any pay.

I already learned if I tell them why I am off, they insist I make up the time the same week by working in my weekend off. They seem to think my infusion day is a happy fun day off! In fact I’m more tired than if I was sick with flu. Infusions exhaust me and I need a day just to recover.

I used to tell them in advance, so they can find a replacement, I tried to do it the nice way. But it seem they want to punish me for being off, so I just call in last minute now. I’m tired of playing around with them.

[Hidden]

Yes, I feel similar as I'm 8 weeks into a new job & feel very awkward explaining to my new boss I'll need time off for these infusions. I really hope they work for me because, like you I want 2 forget it's there & at the moment it's on my mind every day. It is hard xx