Getting fed up now.

I completely understand your frustration. We feel so out of control of our own lives with this condition. The simple act of toileting is something we get mastery over by 3 years of age and here we are with not only no control but pain, stink and various foreign parts leaving our bodies at will. We can envision ourselves being well but not when it will happen. We can adjust our lives to accomodate the inconvenience and pain and focus on the things we have to be grateful for but it is also extremely difficult to not grieve for the life we had while in remission or prior to DX. Remember that stress makes things worse when we are flared. One rule I use for myself is to remember to not "should" on myself when I am already crapting on myself it makes for an even bigger mess to clean up. See the small things that are getting better each day and if you can't find something that is getting better look at the people who are there supporting you. You will get to a state where you can go to work, even if you need to use Depends. You will get to a place where you can manage the pain........I use Yoga breathing. As for other suggestions, I am totally juicing and pureeing food so as to give my colon a chance to rest.

Hang in there.

Scottishcammy:

Welcome to the crowd.  My son was diagnosed over a year ago with severe pancolitis.  When doc first dx'd him, he said no problem, he'll just take a couple pills a day and be on the road to recovery in no time.  He did forwarn us though that there are a few rare instances where some of these kids can take longer than a year to get into remission.  Well here we are and into some of the stronger meds available for kids now.  There have been many days he didn't make it through school and times he was on the verge of being hospitalized because he just lost too much blood and diarhea and had no strength to do much more than get out of bed.  But I will have to say that overall there is improvement compared to some days he's had.  But the way we see it, if they can't get this thing under control there is always surgery, and then he's cured!    No more 15 pills a day for that pore kid!

As far as the bathroom goes he's had periods with upwards of 20 BM's a day.  The nurse has been informed of this problem and gets him back into class or calls if it gets too bad.  If you have a good relationship with your employer I would encourage you to discuss with them the fact that you could potentially miss some work.  As a business owner myself, it would certainly come across better than not showing up.

And son tells me that he certainly has noticed stress is a contributing factor to the amount of bleeding.  And this doesn't just consist of stress from a bad day, but also stresses on the body like lack of sleep and colds.

Take care of yourself and hold your head high!

Thanks everyone! I'm trying to be positive, usually I am very, maybe it's coming down the steroids. I've been tapering 5mg/week and came down to 20mg on Wednesday. The consultant did warn me I might get a bit down with it.

It seems that having this disease really has it's ups and downs. It's easy to get down when you are on the tiolet all day, unable to leave the house, and feeling weak. It's a lot easier to be up when you feel normal which sometimes can be hard to feel. I tried so many meds and had the same problems as you until Remicade. Once I started it, I finally was able to not be on the tiolet all the time. Unfortunatley, I recently had a reaction to it but will try Humira. I used to be so fearful of the heavy duty drugs, but now for me I'd rather risk taking them than to live so miserably. I take Lomotil on really bad days. If I start having too many bms, I take one pill and it seems to slow down the movements or even stop them. It makes me drowsy and I usually sleep after I take it and am able to wake up a few hours later and feel better "most" of the time. You just have to be careful it doesn't back you up. I have to add that I totally recommend the book "The New Eating Right for a Bad Gut" by James Scala. It is an excellent book. I hope you are feeling better soon. (PS- I couldn't see the images you posted but I tried.)

I'm going to get blasted for suggesting this. Please don't kill the messenger but if you are at the end of your rope you can do what I did. I am only doing this until a good medication or cure becomes available. Smoke 6 to 8 cigarettes a day and less if it still works. The carbon monoxide (not the nicotine as previously thought) will put you into remission. For me it always has and always will and any other colitis/smokers I know are in the same boat. I actually hate smoking and it disgusts me and yes it's bad but I am completely blood stool free with no symptoms ever ... until I quit smoking then it's back with a vengeance ... start again and it's gone within 3 days.

Peet said...
Smoke 6 to 8 cigarettes a day and less if it still works. The carbon monoxide (not the nicotine as previously thought) will put you into remission. For me it always has and always will and any other colitis/smokers I know are in the same boat. I actually hate smoking and it disgusts me and yes it's bad but I am completely blood stool free with no symptoms ever ... until I quit smoking then it's back with a vengeance ... start again and it's gone within 3 days.

Peet - I smoke and still got UC and it does not put me into remission. So, now you know someone who isn't in the same boat. It does not work for all UC smokers. Glad it works for you though. And I thought no one knew if it was the nicotine or the carbon monoxide or what. There have been studies where the nicotine patch helped UCers.

Scottish - I hope things start looking up soon. Hang in there.