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Hey Guys,

I was diagnosed with Chrons disease when I was 12 and have had it for 15 years already.  I've been on every possible medication and through all surgeries.  For the past year I've been on Humera which I believe is helping me.  However, I sometimes think that a lot of the symptoms are all mental symptoms (e.g. bathroom urgencies), before walking out of my house I have to think of all the bathrooms on the way to my destination.  I have a one year old son with who I can never do long outings with as I'm scared that I will not make it to the bathroom. I have lately began to notice a pattern of by me just thinking of the bathroom will make me want to go.  Does anyone have any suggestions of changing my mental behavior and not focusing on "what if." I guess I'm hoping someone has any suggestions for me to be able to convince my self that I don't have to go as easy as I could convince myself that I do.

Thanks.

 Reply posted for ella g.

One of the things that's helped me the most is having an emergency kit with me at all times.  Actually, I have several levels of kits.  One I carry on me when I have intense symptoms which contains kleenex, individually packaged handi-wipes, and a couple compressed towel pills that expand into a washcloth when you add water.  There's a slightly bigger one in my briefcase and golf bag that has a change of undies, a plastic bag, and more clean-up supplies. And I have a big kit in each car and in my desk at work that includes the normal stuff plus a change of pants.  I have found zipper pouches to put them in such that I could have a trusted friend fetch it and bring it to me in the bathroom, without even knowing what's inside.  These layers of preparation are incredibly important in my sense of confidence, even though the need for them is surprisingly rare.  Knowing I have them ready allows me to live more comfortably. 

 Reply posted for ella g.

Sometimes no matter how much I try to relax and not worry, I do have an accident, sometimes I get myself so worked up I go into full blown "panic attack" which is no fun. Sometimes I take an Ativan in small dosage to just take the edge off, that helps but most doctor's will not prescibe it in a big quantity because it is addicting, so I use it when I really need it, it does help

 Reply posted for ella g.

Ella

I had the same anexiety problem before I had my colon removed.

I remember the panic feeling.  I had small kids and could tell you many stories of holding my infant son trying to pull my pants down urgently in a public restroom with a toddler in tow!! 

I was put on Zoloft (Paxil is the same thing) which kept my panic/anexiety at bay.  Also to help with the anexiety I had my own "diaper bag" in the car.  I kept a old coffee can in my car in case I had a REAL emergency and could not get to a bathroom quick enough. In 10 yrs I only had to use it once.  I think just knowing it was there helped me cope.  My darling husband bought me a portable toilet for our van one year for Mothers day and it was the best gift ever.  I could go anywhere and not worry about the urgency panic.  I never used it but my kids loved having a potty in the car during soccer games ect!

I am sure you, like all of us UC patients you scope out nearest restroom at any mall or event, which helps with the panic attacks.

Let me know if you need any other support. I had my colon removed in 2000 and am doing great!   Hang in there!

 Reply posted for sngsteve.

thanks so much for your suggesions.  I appreciate it.

 Reply posted for epb.

thanks so much for your suggesions.  I appreciate it.

 Reply posted for ella g.

Inflammation in your rectum or colon will increase the feelings of urgency.  You probably know whether or not you have that inflammation based on your most recent colonoscopy.  It helps to stay regular.  Get in the habit of pooping right after breakfast or whatever.  Although you can't just tell yourself not to think about it, you can try relaxation methods.  In addition, try to build your confidence by thinking of all the times that you lasted an hour (or however long) without going to the bathroom.  Finally, consider asking your doctor for an anti-spasmodic pill, which could help control the spastic colon.  Good luck.

 Reply posted for ella g.

Hi,

I feel for you. I used to have to do the same. Have CD for 35+ years. I recently spoke with a therapist and in our conversation he mentioned a small, easy to read book called "the relaxation response". You can check it out on the web. I got a copy from amazon, read it and used some of the information to control some of my thinking and behavior.

It helped me. I know that sometime suggestions from out of the blue are not taken but, I did realize some benefit from it. Possibly your local library has it or can get it. It isn't very large and isn't hard to understand or follow. It might help.

Good Luck