Still bleeding since Jan. Advice?

I started my flare in January. Went on prednisone at 60 mg in Feb., upped the 6mp to 100 mg and the asacol to 12 pills. I started doing cortifoam two times a day about a month and a half ago. I am still bleeding, a lot. My doctor had tapered me down to 15 gradually but then brought me back up to 20 in hopes of controlling the bleeding. It didn't and his next thought was remicaide or surgery, both options I DO NOT LIKE. I am feeling much better than I did in the beginning of the flare. I am only going about 5 times a day (sometimes less) and it's not horrible when I'm in there. The bleeding is constant though and I need other ideas of what to do. Please help with any advise. I am also on carafate to "firm things up" and it helped a ton with the cramping.

I'm in the same situation as you. Ive been bleeding continuously since Feb 6th and been hospitalized for two weeks during this time and was on IV hydrocortosol and then high dose oral pred, none of this stopped the bleeding (as it had done in previous flares) and even now in early May the bleeding is still going strong. Im worried all this bleeding is causing permanent structural damage in my intestine, which may never heal, and on top of the fact that it drains iron and protein etc from the body continuously. It doesn't seem to concern my GI as much as it does me strangely.

Anyway i think if you don't want surgery you really have only Remicade to try, or just try waiting it out another month or two if you think your body is up to it and see if it gets better on its own.

I myself have decided against Remicade as its not a cure and no guarantee of remission with it, and regardless it greatly reduces your immune system so surgery if it comes to that could have more complications with infection and healing etc.

I'm pretty much resigned to the fact that my current flare is the flare to end all flares and the one that puts me into surgery so im mentally preparing myself for this and have already visited a surgeon and talked about the procedure. I have been visiting sites like ucvlog.com and www.jpouch.net to get familiar with what i might have to go through. Perhaps you should mentally prepare yourself for surgery so its less of a mental adjustment if it indeed comes to that.

I am afraid I am in the same boat... I have a colonoscopy in 3 weeks - but I am afraid of the bad news I may be getting... I am bleeding after tapering off pred... I just started 30mg today from 20mg...hope it helps a bit... I will be getting a stool sample to check for infection - that could explain the bleeding since I have never bled this bad or long before....it is very concerning for me.

I am going to try 6mp and / or immuran, then Remicade....then I am out of options... Mentally I have not accepted surgery yet...not sure I will. I can live with the low quality of life - as long as I do not have displacia or any cancer, I am going to keep my colon as long as possible... It is my ultimate fear right now losing my colon...something that I may not be able to come to terms with....

about same situation here.  I just talked to my NP who is conferring with the doctor this afternoon about continuing 6 MP plus the 25mg. of prednisone.  My symptoms are so much better, I feel better, but still have mucous/blood/loose BM sometimes. The NP said as long as I have bleeding the ulcer is open and could easily spread further (it is 30 cm up left side) and I would be in "trouble" and needing surgery or ? I will avoid surgery at all costs until they say I have to have it to save my life.  But that is just me!

ElaineNY

     A few questions.  Where exactly are your ulcerations?  I have ulcerative proctitis and was hospitalized for ten days last year.  For most of my hospital stay I was fed through a PIC line.  When dischared I still was flaring but followed a strict low-residue diet.  I am not familiar with carafate, but I do know that anything which contains fiber is a big no no for me while flaring.  It makes my symptoms much, much worse.  If your ulcerations are confined mostly to the rectum, I would ask the doctor if you could switch from Asacol to Colazal.  Just suggestions.

I think I have seen people on here who are pregnant and on remicade but not too sure. I do know if I were planning to get pregnant, I wouldn't want to be on any major drugs but I guess if you don't have a choice, you don't have a choice. I personally never wanted any children so for me, it's not a decision I worry too much about. I do know I have seen people say that if you begin remicade, it's not a good idea to stop because it may not help you when you try to take it again. It is definitely something you need to think long and hard about if you're plannign to start a family. Are you married? Planning a family soon? If the inflammation doesn't stop, you may be in worse shape in a few years and not have any options besides remicade, humira and surgery. All of which may impair your ability to conceive. I don't know much about this, as I said, I've never intended on having kids. I hope you can find the answers to your questions and a solution to subside your inflammation. I've seen a lot of people say that pregnancy has caused them bad flares. You could always adopt or take some eggs so you can use a surrogate or something in the future.

If you are unsure, take your time to decide. I have bled daily and gone 8 time a day or more, for decades! That was my normal. And to look at me you would have thought I was very healthy.

I'm doing Remicade in hopes of experiencing what normal is. I don't worry about the risks, they are worth it. UC has disrupted my life long enough.