Posted 7/8/2019 5:07 AM (GMT -6)
I have been writing earlier about my struggles with going into remission... It just never seems to happen. The last time I wrote, I was starting prednisone for the first time, and experienced that it wasn't working too well for me. But it made me kind of able to function again. I have been unable to go off prednisone since then, and have been trying for two months now with humira, which has done nothing, unfortunately.
The next step now is trying Remicade.
My stress levels are still high, there's a lot happening that I can't be in control of, I just have to stand in it. But a lot will calm down from now on, most likely. Hopefully, that will help my condition to calm down too.
I need to ask you guys some questions.
about mucus. It has become more like water, off course still with blood. But I just gotta say it, it's like peeing a little from the bum. Yeah... I don't get it. I don't have watery or loose stool, this is seperate from the stool. Especially in the morning, it's like I have been holding pee, and it flows out a stream.
Anyone know how that can be interpreted? No pain involved with this, at all.
Also. My bleeding seem so severe. Earlier, I could tell myself that it seemed more than it really was, as it is diluted with other fluids. It doesn't have to be much blood to make everything red, you know...
But now, there can be a lot of just pure blood. Somethimes it can be quite thick too.
I do not feel much pain on a general basis. I feel some cramping pain when passing stool, and of course there comes blood with it. But I get really scared,. What are the symptoms to look for when the condition can be so severe that I risk like a rupture or something? I have no sign of hemmies.
I am a little afraid of the answers to this question. Humira did nothing to me. Any chance at all that Remicade will actually work? Any stories here? Its like medications don't work on me, and my doctor said that it could be that I am just a quick metabolizer, if that makes sense. Still I had quite high levels of humira in my blood samples. Even on really high doses on pred, I don't go in remission. 5-ASA does nothing but irritate my colon even more. To me, it's like there's no hope for me.... Off course this makes me depressed, and scared...
I have just said a couple of times that I don't struggle with pain. My inflammation is limited to the last 15 cm (5-6 inches?). But I still can get a feeling of mild side stitches, like the ones you get when running, in both sides. Mostly on the right side. If I was inflammed in this area, I definetely would have known it, since it would have been so extensive to the whole colon. Any thoughts about this?
Flaring since it all started in 2017.
5-ASA stopped working after a year, things got more severe. Started prednisone, want to get off it, but I need to find something that works first... Humira failed.
Supplements: Cod liver oil, l-glutamine, VSL#3.
Diet: Whole foods, home made food, fermented, organic, home grown.