Urgency Issues!

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dietcoke
Regular Member


Date Joined Jul 2008
Total Posts : 186
   Posted 2/18/2009 11:58 AM (GMT -7)   
Hi: I am wondering if anyone can provide some ideas for urgency issues. I used to think I had urgency issues.... Ha, Ha, Ha. Now I really have urgency issues .... BAD! Literally sometimes I have like 1 second! I have been flaring for over 4 years and can't seem to get it under control, and the urgency has definitely gotten worse over the past year or so.

I've tried Immodium a little bit, but not a lot. It just seemed to make me gassy. I also do use a fiber supplement which helps a little too. Doctor just suggested I up my Immodium to 1 pill/4 times daily, but I hate to keep introducing new things...

Any thoughts? Thanks for your help.
39 years old female, Dx'd 2000 Crohn's Colitis in entire colon
Allergic to Asacol/Pentasa/6MP/Immuran and many others
Past meds that worked: Cipro, Prednisone
Just stopped Humira 1/1/09
Started Remicade 1/15/09 ... and waiting for it to work

Daily: Folic Acid, Vitamin C, Fergon Iron Supplement, Omega 3, Multi-Vitamin


belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 2/18/2009 12:31 PM (GMT -7)   
If you fast, do your symptoms ease?

I don't know what to suggest except to do an elimination diet and see if you can get your symptoms under control. Then slowly add things back in a controlled fashion.
Belleenstein:

30+ years living with Crohn's.


dietcoke
Regular Member


Date Joined Jul 2008
Total Posts : 186
   Posted 2/18/2009 1:20 PM (GMT -7)   
Yes, I feel better if I don't eat anything. Literally basics like liquids, rice, etc. go through me. I've had food allergy tests and know what to avoid but maybe an elimination diet is a good idea, if not a very hard one...
39 years old female, Dx'd 2000 Crohn's Colitis in entire colon
Allergic to Asacol/Pentasa/6MP/Immuran and many others
Past meds that worked: Cipro, Prednisone
Just stopped Humira 1/1/09
Started Remicade 1/15/09 ... and waiting for it to work

Daily: Folic Acid, Vitamin C, Fergon Iron Supplement, Omega 3, Multi-Vitamin


Irish Red
Regular Member


Date Joined Nov 2007
Total Posts : 54
   Posted 2/18/2009 4:48 PM (GMT -7)   
At little of topic but why did you stop Humaria and go on Remicade? I did as well because of the evidence for pregnancy. However the longer I was on Humaria I found I was reacting to it.

CD since 1988,

Cocktail of medications ( Remicade included) and have explored many herbal remedies.

Currently experiencing another flair up after 4 years of remission.

 

"Life is like a box of chocolates you never know what your going to get inside" 

Everyone knows that quote... how true how true.


Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 2/18/2009 6:07 PM (GMT -7)   
I went thru the same thing for 4 yrs. Baths to relax hard muscle spasms helped in the morning and evenings. It made me feel better. There is definitely a connection between eating how much and how often and number of urgent runs to bathrooms. I wear protection now so if I do have an accident it doesn't get all over. Then I head to the bathroom without leaking out. I go out in public now without as much worry. Hope your new medicine works for you.

78SilvAnniv
Regular Member


Date Joined Apr 2008
Total Posts : 289
   Posted 2/18/2009 9:35 PM (GMT -7)   
Trigirl, please tell me what protection you use.  I am interested to know how comfortable it is and how easy or difficult it is to disguise under clothing.
Thanks,
Heidi
I have the ability of single-minded determination and accurate project focu....Hey, look, a cat!
 
Crohn's and UC are pretty darn crappy, but if you can't laugh at yourself, you'll cry......I'd much rather laugh.
2001 Dx'd with UC.  No remission.  No improvement with Remicade.  5/2008 surgery, removal of 6" of left side colon.  Dx changed to Crohn's.  Remission for 8-9wks after surgery, symptoms returned after resuming 6MP.  Changed maintenance med to Methotrexate (MTX) and had great results with IM injections.  Nausea and symptoms returning with oral MTX.  Switched back to IM injections and am slowly improving.


andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 2/18/2009 10:05 PM (GMT -7)   
Hi I have the same problem and end up losing control every day of the week but mine is due to active disease in the ileum and rectum area so my GI says and once that is under control then perhaps it will ease up. I also have a stricture and currently trying several drugs to get on top of it. Do you also have active disease in the lower end of the bowel? If I was able to keep it in my GI says one of the best meds to help with that would be colifoam or predsol suppositories. I have tried everything. Keep us posted, good luck

Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 2/18/2009 11:31 PM (GMT -7)   
Well, honesty here is amazing, so here goes....I am 5'1" and weigh about 115 lbs. So I tried pads first and they worked until the accidents were so big that a pad wouldn't absorb the damage. Then I tried "depends" and they were too big, although if I cut off the top few inches they weren't so bad, but bulky, under pants especially. So now I use "goodnights"( for girls the extra large size) and they are the best thing to help in more than one way. I don't wear tight pants or anything to clingy but no one has ever asked about them. They aren't as bulky as the adult ones. So if I can't be better I still try to work on being happy somehow! This helps lots. OH yeah and they rip off if you need it in certain situations. Just a gem!!

dietcoke
Regular Member


Date Joined Jul 2008
Total Posts : 186
   Posted 2/19/2009 2:35 PM (GMT -7)   
Irishgirl: I went off Humira because it didn't work. And, I was getting reactions to it too -- my whole body was crazy itchy all the time and I'd get a huge and I mean huge injection welt every time. I was on it for eight months, kept thinking it was working, but it never did. Is Remicaid working for you? It isn't for me yet... I have my third infusion next week.

Trigirl: Thanks for the advice on Goodnights, I will look for them. My three year old daughter who just got potty-trained will think it's really funny that mommy is wearing a diaper.

Andorable: I do have disease in my lower bowel, but my doctor told me my rectum was spared. Although my last colonoscopy he said it was very inflamed, so not sure if it really is spared. Will have to ask him more about it. Never heard of colifoam or predsol suppositories, but will ask him about those too.

I am trying the immodium and it does seem to be helping a bit too. It's funny that all the crazy expensive scary meds I am taking do nothing for me, but good old in-my-closet immodium helps.

Thanks for all your advice!!!!
39 years old female, Dx'd 2000 Crohn's Colitis in entire colon
Allergic to Asacol/Pentasa/6MP/Immuran and many others
Past meds that worked: Cipro, Prednisone
Just stopped Humira 1/1/09
Started Remicade 1/15/09 ... and waiting for it to work

Daily: Folic Acid, Vitamin C, Fergon Iron Supplement, Omega 3, Multi-Vitamin

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