Bad Day

I am near to tears as I write this as I just feel so frustrated, depressed, worried etc. I even drank a full bottle of wine last night in the hope that I could just chill for an evening and get some sleep. I haven't been able go far from the bathroom today (possibly the wine may have something to do with it and I know you will say NO wine). I have had no visible blood for the last few days but still been going quite a bit but even more today. I have been so much now that I am so sore. I have got piles I am sure because I can see purple veins when I look.
I have been flaring since October, had 2 courses of steroids and am now on my third which started at 25mg but has now been increased to 40mg. When I get to 20mg I have to stay there because I can't have aza of any biologicals due to neutropenia and other health issues. I just feel I have run out of options for any treatment. I am hoping that the steroids will work soon. It is only when I come off them that I flare again. This is so disappointing because prior to October I had a year and a half remission. I know the evils of pred but I have no more choices and will have to risk the side effects.
This disease is pants, I hate it with a passion. I think why me. I just seem to have loads of bad luck. I sound really selfish I know, there are lots of other people who are worse than me and I empathise with them.

It seems that mesalazine does work for me any more, particularly the enemas I have used for the last 6 months religiously. I have wondered whether to give my butt a rest from them. Has anybody stopped them when they didn't work and restart them later and they did work. It is disappointing because when I started using them three years ago they were pivotal in inducing my last remission.

Now I am going to apologise to everyone or having to put up with my rant.

iPoop, unfortunately yes. I am going to see a dermatologist to discuss the risks concerning aza but my consultant said due to the limited nature of my inflammation (rectum and sigmoid) he is sceptical about aza being of any benefit. If I do have aza though I would have to self inject gcsf to stimulate my bone marrow to produce more white blood cells.

try this current thread for alternative ideas =

www.healingwell.com/community/default.aspx?f=38&m=3649765

I hear what you are saying, Martha.
I've been flaring since last year, September. Was put on Predisone at that time and it stopped in mid October of 2015, but then started up again in early Feb this year. Tried to squelch it with more natural methods of food/supplements, but finally gave into going back to the gastro doctor for more Steroid foam and Prednisone. Was put on a 20 day course starting at 40mg Pred., and when tapered down to the 20 mg bleeding was seen again to the point of full bloody mess in bowl. So, back on Predisone again starting at 60mg for 7 days then tapering for 6 weeks. But, scheduled for another colonoscopy on June 21st to see if the disease has traveled to the Sigmoid colon. My original diagnosis had been Ulcerative Proctitis back in 2007, but was under control with Canasa Suppositories. However, now neither does Canasa nor Cortifoam seem to be helping, which is why my doctor feels it may have traveled up further.

I hear your frustration and depression about this, as I have it too. I am 69 years old and got this blasted thing late in life, and can't imagine how people function going to work every day with this disease. It has to be holy hell for them. Fortunately, I'm retired and able to do some work from home - close to the bathroom!!

I've also wondered if better to give the butt a rest and not put anything up there for awhile, but when I tried that, it didn't work for me. As much as I dread the colonoscopy (the prep work), I feel that until the doctor can actually see what is happening and prescribe the right meds for me, I won't be able to get this back into remission.

Am also looking into the possibility of foods/supplements after getting over the flare.
Hate all the meds, and read about many people using diet, foods, and supplements to help maintain.
But, that said...with this disease what works for one does not always work for everyone.

Mad Martha said...
iPoop, unfortunately yes. I am going to see a dermatologist to discuss the risks concerning aza but my consultant said due to the limited nature of my inflammation (rectum and sigmoid) he is sceptical about aza being of any benefit. If I do have aza though I would have to self inject gcsf to stimulate my bone marrow to produce more white blood cells.

Yikes. Well I'd consider surgery before I self inhected gcsf to stimulate bone marrow. I understand why 6mp/aza might be off of the table as the way they work involves slowing bone marrow production of wbc.

I'm not entirely cleary why biologics are off of the table as they don't involve bone marrow nor do they impact wbc/rbc etc. A bit curious on why there.

If 6mp and biologics are truly off of the table then would you consider surgery and have a consult? With your medication limitations there's just not many available options... Either that or explore non-biologic clinical trials.

In rare cases, wbc has been extremely low in patients due to mesalamine (often termed blood anomalies in side effects lists or it'll say low wbc, rbc, platelets, etc.). I wonder if that's your case? Maybe ask your doctor if stopping mesalamine might level things out?

Certainly, you're case is a bit unusual having low bloodccell counts without immunomodulators. It sounds like you're seeing all the specialists you need to. Be careful for sure. One way or another your uc needs to be controlled.