My apology to you guys....

In several posts here I have stated that I have not had your kind of urgency, never had an accident home or away, etc.  I sometimes sounded like I had no respect or empathy for what you all are going through.  I want everyone to know that is not true.  I AM feeling fortunate that it has not happened to me - yet!  I am also 68, newly diagnosed which is unusual.  I have had IBS for years so the doctors say - diagnosed with an upper GI test years ago.  My GI doc now says I may have had IBD for years - just mild and no bleeding (which took me for the colonoscopy last year).

Last night I was remembering living in Germany in 1961, young, new mother, sharing a bathroom (had to go downstairs from our apartment) - sharing with 9 people.  Just could not imagine what it would have been like to have UC then. 

Please accept my appology if I sounded insensitive.  I wish you all the best - some of my methods of "holding it" work for me - that is all I am thankful for.

I am praying for a cure or at least better medication for this DD for my grandchildren, etc.  Hang in there!! Thanks so much for your info and concern for me on this forum.

Prednisone is working for me now and 6MP is ok - going for blood tests today - hoping all is ok so I can continue to take it.

Hugs, ElaineNY

I haven't thought that any of your posts have been insensitive. At the same time I think that we're all entitled to a little bit of leniency. We're all dealing with a chronic condition and sometimes that plays with our emotions. We can be cranky one minute and apologetic the next. I have found someone else on this forum to be a bit irritating lately, but I have found this person in the past to have been very cordial so I just take them with a grain of salt.

If we can't put up with each other then we're all in trouble right? Who else will listen to us describe what our excrement looks like in great detail and have advise on it?

I didn't find you insensitive at all...you didn't suggest that those of us who have urgency should just "hold it." But thank you anyway!

I just hate the urgency because it makes it so hard to go do things and I feel like a prisoner. It's not fun being afraid to be more than a 15 second dash from a bathroom. :(

Elanie - you are extremely sensitive. I am happy that your UC is not too severe. You have to focus on getting healthy so you can manage your other problems. You shouldn't feel bad, you have your experiences and others have their own. I literally can't hold it when I am in a bad flare. I have to run for the toilet and if I run too fast, that might cause an accident, . I shouldn't laugh, it's really not funny but I have a sick sense of humor. I am lucky that I have been able to hold it the few times I was cramping in my car, feeling like I wouldn't make it to a bathroom. I wish urgency wasn't one of the issues I dealt with. It's probably the worst of the bunch. I also hate going to the bathroom 5x in a row and nothing much coming out. I hope there is better treatment for us in the future and for our children and their children. My heart goes out to young people dealing with this disease. It has been devestating for me and I was diagnosed in my twenties. I can't imagine people living through their childhood inflicted with such an awful illness. It's not just physically draining, it is emotionally painful and embarrassing. I wish I could turn back the clock and never end up with UC. I think about that all the time... 

Thanks everyone!  After many years of health care problems and options - and my husband who has many health issues - I have learned YOU have to be your best advocate for YOUR health - YOUR body!  No one knows it like you do.  Don't let anyone tell you different.  Yes, this is a DD but there is a lot of ways to "live with" it and have a normal life.  Look at the people in wheelchairs, etc. etc. who do so much!  My son is a research scientist and now working on a cure for Alzheimer and MS.  I pray every day they find a cure for UC and Crohns also.

ElaineNY

     I never found you to be insensitive either Elaine.  For those of you who have trouble "holding it"  (been there many times), perhaps  placing a porta pot in one of the rooms would make you feel more at ease?  I have three of them throughout the house...believe me, when you live in a house with one john and ya gotta go...wow...they are a God send!  We used to keep one in our Astro Van but now we have a Ford Expedition....hmmm...that's gonna take some manuevering.

 

     So far, so good Elaine.  Thank you for asking.  By all means mention those CBC's to your doctor.  I am very surprised he hasn't prescribed monthly blood tests when you went on the 6MP.  Your white count has a tendency to drop while on it.  They have to make sure it doesn't go too low.  I see my GI doctor on Wednesday.  His office called today to ask if I had my blood tests because the last one the nurse noticed was last December!!  She must have overlooked the report because I know for certain the lab sends him the monthly reports faithfully.

     It sounds like you may have a small amount of blood in your stool.  Are you watching your diet?  Sometimes if you eat something spicy or beets...that could do it.  I remember one time I ate beets and thought I was bleeding. 

     My GI doctor had me on a pretty fast taper last time...40 mgm with a 10 mgm per week taper and the last week 5 mgm.  It took three tries but finally the 6MP must have kicked in with the prednisone.  You may have to start the enemas if you are bleeding.  Let's hope not.  Good luck!

I think we all just state what Colitis is like for us. We don't mean that it's the same for you. While I do have issues with urgency when I'm flaring, I don't have issues with pain. However, I know that some of you guys have unbearable pain when you're flaring.