Feeling like crying

Hello Everyone.

Not been on here for so long. Had nine months of remission from my Proctitis and felt great.

However here it is again. Started beginning of November and doesn't want to leave me alone.

Taking 3 mezavant tablets and asacol supps to start but bowel frequency kept increasing and blood still appeared so was started on 40mg Pred in January. This is usually what does the trick but got down to 15mg and there it was again BLOOD. Spoke to my GP who said up the pred to 30 mg again and reduce again by 5mg every seven days. Did that one week ago and still got blood.

Spoke to my IBD nurse who is getting me in for a flexisig (what ever its called).

Am so disappointed that the steroids don't seem to be working this time (they did for my last two flares) and am worried that I am running out of options. I have trouble with a low white blood count due to other medication I take and My IBD Nurse has said that they will have to think extremely long and carefully about whether they can give me immunosuppresants because of this. What are my other options. I am really very worried.

I also am not sure we have here in England the drugs that are available in the States.

Just need some words of encouragement and hope fronm you good people who know want this horrible disease can do you in both body and mind.

There feel so much better to at least have written all this down.

How did u flared up again..u dint stick to your diet/meds? Anyways u'll be ok.. This disease demands extreme patience.. pray to God and stay positive.. Lots of love

Thanks for your kind replies. Garylouisville - I have taken my Mezavant religiously for the last three years, 3600mg a day (never reduced to maintenance dose). As for rectals as much as I would have liked to have used them all the time my consultant said no only for flares. I did see a different man three weeks after this flare started who said use them for maintenance but I think this was too late for this flare. Certainly going to argue my case when I have my flexi in a couple of weeks because it makes so much sense. I also have religiously taken all my supplements which are probiotics, turmeric,multivits, folic acid, zinc. Have tried physillium but don't think it helped much. Wondered if anyone has any more ideas? Have been reading about boswellia - is it any good?. I bought a tub of L Glutamine but then was unsure whether or not I should take it beause I read some things on the internet.
I really wish I had disobeyed my consultant at first with the rectals but they are supposed to be the experts and you just do what they say.

Glad to hear that you are doing okay on uceris. Not sure if this is available in the uk but also will it get to the rectum where my inflammation is? I wonder if Steriod supps would get to the spot better.
I have tried Pentasa and will not touch either oral or rectal of that again as it made me worse. My suppositories are Asacol. Wonder if yu cold use steroid supps and asacol together ie one in the morning and the other in the evening?

I hope I don't get back to how I was before I was diagnosed.

I would throw the consultant overboard. I would hate that IBD nurse or consultant crap. Fortunately, I don't have to deal with that. When I need to see or talk to the GI I see or talk with the GI, no middleman, unless someone in the office passes the message on to him, but even then it is the doctor I deal with in the end, not a flunkee.

Your lucky!! the IBD nurse deals with the minor things then passes you to a consultant.

Good luck with the grape seed

How far up is your inflammation do you know? I only have 2 cm of inflammation so the suppositories work well for me. If yours goes higher up enemas may work better for you. Or use one in the evening and one in the morning. I would always use a rectal med at least twice a week if I were you. I do and increase at the first sign of anything weird going on. Is the max dose of Mezavant 4 pills a day? My lialda is and I think they are similiar. I would ask about increasing that too.

Unfortunately pred helped me the first time I took it and after that not so much.

If you have enough of them yep I would up the Mezavant for sure. I am a hoarder too...I have enough Lialda for a year. Right now I don't pay a ton for it so I keep it around in case insurance changes again. Hopefully you have enough of the supps too. Those are expensive here and I only get 30 at a time which wouldn't last me long.

Good luck...Hope it helps.