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Ulcerative Colitis
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Posted 5/9/2011 7:53 PM (GMT 0)

Hi Everyone!  Thank goodness I've found you.  Hope you can help.

The BACKGROUND: 

I've previously been married to wonderful man.  If I had to go, he'd vacate the bathroom.  Driving, he'd find the nearest bathroom.  He's in the shower, I can still barge in.  I have an accident, he helps cover me up and doesn't ask any questions. 

I have SEVERE urgency.  If Im in a flare I go 30 times day and night.  I'm currently not in a flare but go 5 times/day especially after eating.  ( I have about 15 min after I eat.)  I plan all my activites around when my last poop was.  I haven't worked for 4 years. 

QUestion #1.  Is there a medication that can slow the bowel down? Or something to stop the hormones or whatever it is that stops the signal from brain to bowel?

Question# 2.  I'm in a new relationship.  He only knows that I have u/c but we have not discussed anything.  When we see each other I go through all those safety things in my brain. i.e where is the bathroom.  I constantly have anxiety about urgency and other people being in the bathroom, getting trapped somewhere etc.

Anyway new guy wants to go on a 5 day trip, including a 5 hour car ride starting this Friday.  I haven't slept becasue of anxiety and I'm going about 8 times (formed) because of nerves I'm sure.  I'm nervous about the car ride, the hotel (what if he's in the bathroom?  what if he notices how much I'm in there?  etc etc) and also the eating bit.  He's very active and I'm sure after eating would want to go for a walk and be "normal healthy people spontaneous".  What do I do?  How do I cope with this?

I can take immodium but that causes me gas, bleeding, bloating and mucas. At the most I've ever taken is 1 pill every other day, but I can see myself taking a lot more especially from the car ride.

Question # 3.  Has anyone tried hypnosis for urgency, anxiety?  Any CD's to recommend that's cheaper than hypnosis?

Thank you!

Ruby- from Toronto, ON Canada

U/C for 10 horrible years, pyoderma gangrenosum 3 yrs in remission

been on everything with little effect, currently on asacol and IGg which is making a positive difference for my colitis but now I'm too nervous about this trip!!

Posted 5/9/2011 10:04 PM (GMT 0)
Welcome. Your anxiety is understood here :-)

#1 Yes. Most people take Immodium for D but you say that causes you problems so consider using Lomotil which is an Rx, could make you drowsy however.
Also helpful for muscle spasms is dicyclomine (brand name Bentyl), it is also an Rx but very cheap.
As far as slowing the gut down these help but UC'ers with multiple BM's are having them because of major inflammation and these will only stop things temporarily. You really need to get your inflammation down not just mask it.

skipping #2 for now

#3 Yes I have done hypnotherapy and liked it. Hypnosis is very helpful for anxiety but it didn't stop the urgency or D or BM's, that is a physical injury, like trying to fix a broken limb with hypno. IMO that level of mind control would be over the top. It has been very beneficial in other areas however.

When my D was constant and I was faced with something I had to do with no excuses I ate some cheese because it stops everything in my gut. Even now I can't have a small bit of hard cheese without becoming constipated, just the way my gut is. I do not recommend getting constipated for 5 days, you could be putting yourself in danger. If it were me I'd be totally honest with Mr. New Guy and tell him the truth, now, not later. Honesty will be the best policy and you won't have to go through hell, it's not worth it.

Best wishes.
Posted 5/9/2011 10:47 PM (GMT 0)
I'm not a health practitioner; so I can't give advise. I can only tell my experiences and what I'd do:

My health and life style are very important to me. I am very active; so being able to go outside the home and do things is my life. If I had to choose between giving up my colon or loosing out on life, I'd give up the colon. I'd get the J-pouch. The external bag doesn't sound too appetizing to me.

Of course, I don't want to give up my colon; so I use alternative treatments, in particular, diet, probiotics, and fecal transplantation. Luckily, they work for me. If they didn't, I'd try other safe alternative treatments. And if they didn't work, then I'd get my colon removed.
Posted 5/9/2011 11:06 PM (GMT 0)
I completely understand your anxiety, it's a big step to move the relationship onto this level. I constantly have all those concerns (worried about not getting to the bathroom in time, worried about it being in use when I need it, worried about car trips, worried about my boyfriend being less attracted to me because of the nature of this disease) and it was even harder in the beginning of my relationship, when everything was unstable and new.

Personally, I would hold off on getting into the darker parts of your disease as long as possible, if you can. Seems like Immodium doesn't agree with you, has anything else worked for you? Like not eating (might help for the car ride), or Metamucil? Otherwise you might have to suffer through Immodium. The spontaneous walks etc. would be hard for me, I try to make sure I have at least 2 hours notice before I have to go anywhere, helps with my anxiety and lets me "empty myself." Haven't tried hypnosis or anything myself, but I have had success controlling my urgency somewhat with breathing and calming exercises (helps me especially when I'm in the car).
Posted 5/9/2011 11:11 PM (GMT 0)
I would just be honest with him and tell him what is going on. It will make for an easier trip. I know it will still be hard traveling in the car and doing things but if knows it may help. I take two immodium every day when I wake up and some Bentyl to slow the gut. It does help some but I still make sure I know where a bathroom is at all times. I have some trips planned to the beach soon and they are really stressing me out. I just tell everyone I am with the situation and hope for the best. They are very understanding.
Posted 5/10/2011 1:11 AM (GMT 0)
My bf of only 3 years has been great through all of this! I've always been "weird" about potty issues, public restrooms, anyone in my house besides me, etc. I have had urgency issues since before I ever knew my bf. We have a code word which is sort of a funny for us both, as neither one of us wants to go #2 if the other is around. I just say, "Honey, I need privacy right now", with a smile, and he will happily go find something else to do away from the bathroom. It's more funny now, but in the early days when we were long distance dating and he or I would be at the others home...that was VERY stressful! I would tell him to go warm up the car (just before we would leave on a trip), I have to go potty one last time. Or, I'd say "I need privacy", and he'd go drink his coffee on the front porch. And we never spoke of it again.

I've been divorced a very long time and have had several long term relationships over the years. The one thing I've learned is that most men don't worry about bm's. Guys go a couple times a day and they are proud of it! Being in a hotel room or the same room is the stressful part. Just tell him you need the girls room more than your average girl. And, I've always armed myself with candles, matches and/or incense. I lite a candle before I get in the shower and I take my time.

I read a post from a veteran member when I first started lurking. She said something along the line of, "If he can't deal with this, then do I really want this person in my life? Being that this is something I am going to deal with for the rest of my life." I liked that post.

Best wishes!!
Posted 5/10/2011 1:54 AM (GMT 0)
I totally understand. I'm traveling in two weeks to a dorm or hotel room with some of my daughter's classmates and their moms. I am freaking out about sharing a bathroom with total strangers (it's a competition setting, and I cannot change the living arrangements).

Last time I was in a car for 5 hours I only had to stop once. Not so bad. Perhaps you'll be just as lucky. I find that avoiding dairy and too much sugar kind of helps.

I don't know how I'd feel about sharing too soon in a relationship. On one hand: you don't want him around if he's going to freak out about it. On the other hand, perhaps once you've gotten to know each other better, he'll be a little more willing to look past the things that may be a turn off to someone less committed. I guess only you can determine where you are in your relationship.

All the best!
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