Crohn's hurts! Relationships and work suffer when flares hit...

[BFSkinnerchick]

After years of nausea and diarrhea and a few instances of significant weight loss, I finally know why. Doctors kept telling me it was stress, I had OCD, or IBS. One doctor prescribed 4 meds--Lexapro to increase serotonin in the gut, hyoscyamine/Levbid for colon spasms (anti-cholinergic), Ondansetron/Zofran for nausea (a miracle drug!) and Align (probiotic.)

Then the stomach bug hit me in April 2012. I could not take the pain anymore and went to the ER. My doc thought I might have appendicitis. The CT showed "mesenteric adenitis." This meant inflamed lymph nodes. I was put on IV Flagyll and Cipro. When I got out of the hospital, I begged for a GI consult. The doc ordered a special DNA test that showed up positive for 3 out of 4 markers for Crohn's. She was shocked. I was both relieved and bummed. It made sense. Suddenly so did my dad and grandma's health problems, just like mine.

I have been taking Apriso/melamine for about 6 months and the nausea and diarrhea seem to be less intense but last longer. I get few really "good days" that I'm not aware of my belly aching. I've become afraid of traveling, afraid of illnesses (especially the stomach bug!) and just afraid of touching off a flare-up in general. This disease affects every part of my life. I am an unreliable friend/wife/mom. I say I'll do something but I can't always back up my promises because I might become ill...

I hope to learn about others' coping skills, diet, etc that help you live as normally as possible. I used to be pretty fearless, but I feel like Crohns is running my life. Thanks and well wishes to anyone reading this!

 

[nevilletanner]

first off all get a food diary going - this will help in a huge way. i cant say what to eat or not to eat as crohns works in different ways with everyone and what they eat, hense the food diary.

as to still getting the big D have you tried immodium ? its great at controlling D and as a side affect it helps relieve some of the strain on your intestines as it acts to slow down the passing of food allowing more to be absorbed.

as to sickness, there are drugs that can stop you feeling sick - personally i have been prescribed cyclizine that really does help with the nausia.

as time goes on and you work out what food does what, then life in general will improve, up until a year ago i woundnt want to go out or on a journey due to feeling ill but now as long as i plan ahead and watch what i eat i dont really get a problem except for the tiredness that seams never ending.

 

[Susan2]

It sounds as though it is time to ask your GI to review your meds. I'm not very knowledgable aboout these but I am sure that some of the others will come on and suggest what you could talk about to your GI.

 

[BFSkinnerchick]

I haven't heard about cyclizine. I'll check with my doc. I was also unsure if I could use Imodium. I am a nursing mom, which complicates things... I am putting off a colonoscopy and EGD out of fear (partly, embarrassed to admit that) and partly bc I am not ready to stop nursing. I will start a food diary, though, and call my doc. Thanks so much for the recs and support!

 

[Susan2]

Talk to your doctor about Immodium, too. It seems to be well tolerated by most Chronies, but within the recommended limits, of course. I use it when I am going out and know that I will not be able to much about the food on offer - Christmas and New Year are particularly bad times. I don't use it if I am going to be at home.

When I travel overseas, my doctor prescribes a stronger anti-diarrhoeal for me.

 

[CLynn]

Hi BF

Questran or Colestid is good for the "d" too, I take Colestid tablets daily then only the immodium as needed for a booster. By the way, your user name made me smile,