For those of you with Crohns...

[eccons]

I'm wondering how others with Crohns deal with their pain. I am going through a bad time right now and have episodes of pain that make me want to throw up or black out. This is my 6th day of eating nothing but chicken soup, white bread and popsicles, but I am still having smaller bouts of pain.

How have you all managed it enough to live normal lives? I have trouble going into a store, I refuse to go anywhere that doesn't have a restroom, car trips scare me (ok, they terrify me), and I've tried and failed to have a parttime job outside the home because I'm sick so often. Thankfully, I began a home business that is doing very well, but I feel so disconnected sometimes from the real world.

The last 3 times I've tried to go out with friends, I've had to cut the date short because I got sick. I'm only 22 and have had Crohns for about 2 years. The only way I survived my wedding last summer was a Remicade a couple days before the ceremony and a strong stomach muscle relaxer before I walked down the isle. Thankfully, I have a wonderful husband who knows with a twitch of my eye if I am getting sick, but I feel like some kind of freak, always having to be shuffled out the door if I'm in too much pain to walk quickly, or on the flip side, always bolting into the restroom. I can't tell you how many times I have tried to go into a store and ended up in pain so bad I had to sit doubled up on the floor. Not that I care what strangers think, but it is pretty embarassing. What do some of you guys do to get through this? Does any of this sound familiar?

[pikamom]

I don't have chrones but I have interstitial cystitis. This is an autoimmune disease of the bladder similar where I have hemorrages and inflamation (inflammation)/scars in the interstitium lining of my bladder. I got sick when I was 26 years old, my husband and I had been married for only 6 years. It's been hard on our marriage but now we just had our 17th anniversary. IC makes my bladder spasm day and night all the time. I have urgency and frequency which means like you with the bowels, I feel the extreme need to pee up to 60 times a day, if I don't get to the bathroom the pain is excruciating. There was a time where I just never left the house because the car was a nightmare. I became severely depressed and eventually tried to commit suicide twice. I'm on social security disability. And yes, I've already just sat on the floor in a store. I hope you have a therapist or someone to help you cope. Always make sure you have a good support system with your friends. I've learned as I got over the depression that people are the most important thing in my life and my faith in God. I try not to focus on my symptoms but on my family, friends, and church. God bless.

[eccons]

Thank you. I have been considering a psychologist, because sometimes I feel so helpless. It depends on my insurance though. What have you done to get over the fear of being in a car? The thought of going anywhere that has even a short stretch of time without a pulloff terrifies me. My husband says that if we were rich, he'd get me any kind of car I want: limo, bmw, porsche. I told him that if we ever get rich, I want an RV with a bathroom in it  :)

[RANDYRABE]

i've had crohn's for over 20 yrs and just had in jan 02 my second operation (44cm of small intestine is gone).  it has been 20 yrs between ops.  as in all crohn's, the disease recurred within 4 years of the original surgery and this last one will prob follow the same course.  in between surgery i had several minor and a few major flare-ups.  first, find a good gastroenterologist.  if he knows crohn's you will take sulfasalazine and steroid drugs.  for pain, the minor flares responded great to 2 darvocets, for major get hydrocodone (vicodan will work) but for the pain it may take up to 3 to have an effect.  if vicodan at those levels won't work, you've got 2 choices.  one, hope your doctor appreciates the extreme pain crohn's an cause and get a prescription for percocet 10 mg.  the doctor won't like it because it is a category II narcotic.  you can take up to 5 per day although with my pain 10 was more like it and up to 5 for the initial dose.  the percocets are completely additive as compared with other pain meds, you take 3, you get 3 times the relief.  percocets provide the same relief as morphine, but faster and don't worry you will become a dope fiend.  if this doesn't take of your pain, nothing will.  your 2nd choice is get into the hospital and probably get ready for an operation.

[RANDYRABE]

forgot something, the diarhea (diarrhea), as if somebody with crohn's could.  if you aren't taking metamucil, try it.  also, 4 or 5 immodiums even with the metamucil works great.  also, my gastroenerologist put me on colestid which binds with bile salts and fatty acids which people with crohn's usually have problems absorbing.  when these get into your large intestine irriatation results and everything passes fast creating many trips to the john.  hope this helps,

[karie]

How did your symptoms start and what test was conclusive in your diagnosis? Did you loose weight ?

[pikamom]

Sorry I didn't get back to you sooner, something was wrong with this topic and wouldn't let me post. As for the car, I was housebound for a couple of years. My urologist encouraged me to wear diapers for the car (that wouldn't work for you) but I could never bring myself to do it. Most places I go I'm familiar with the roads, and know where all the bathrooms are. I have toilet paper in the car so if worse comes to worse there's always a cornfield or tree. As for pain control, I've done everything from morphine and percocet to opium/beladonna suppostitories. Never got addicted to pain meds, people in real pain don't. Presently I use ultram, it's not as depressing as narcotics, but I do have more pain. I weigh the trade off between more pain, or less with drowsiness and no motivation. When it comes to coping with a chronic illness, what works for one person might not work for another. You just have to try things till you find what works for you. Hope you can get some relief soon.

[super fly]

Hi I know how you feel.I live with the same pain every day.I found out I had crohns about six months ago and know what you mean not to want to go anywhere or do anything.Some times I feel like I make my husband misout on things because I'm to sick.I have already been on four type's of pills and had a remacade inf.
and nothing is working .Ifeel the same way you all do this is not a normal life at all.

[super fly]

Hi I know how you feel.I live with the same pain every day.I found out I had crohns about six months ago and know what you mean not to want to go anywhere or do anything.Some times I feel like I make my husband misout on things because I'm to sick.I have already been on four type's of pills and had a remacade inf.
and nothing is working .Ifeel the same way you all do this is not a normal life at all.

[miggidy]

Hi everyone, I'm new to this site and am looking for people, specifically with Chron's disease to relate to.  I've been diagnosed for 19 years now and believe me, it does not get any easier to cope with.  

Can anyone tell me if they've suffered from dehydrated and what the effects are?  I'm curious to know if it has anything to do with being tired all the time.