• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Hello everyone.

My name is Amy. I just turned 40 last month. Although I have had symptoms since I was 10, I was diagnosed last year with Crohn's Disease. Good to finally know why I have to know where every bathroom is in any building I walk into, bad because there is no cure. I haven't made a follow up appointment with a GI Doctor because my first Doctor quit his practice and I never was told what the next step was in treating this disease. So I will be making an appointment for a new GI doctor. I was told I have a mild case. Hard to believe it is mild when you are praying for death on the toilet sometimes.

My symptoms range from uncontrollable diarrhea (20 to 40 times a day) to constipation from 4 to 5 days. When I have the diarrhea I have any where from 5 seconds to a minute warning before the diarrhea is shooting out of me. Luckily, I have never been caught out in public. But, I did have to change career paths when this new symptom started. My triggers are McDonald's, stress and grease. So I no longer eat McDonald's and I limit grease in my diet. Stress is still pretty high but. I am trying. I have found a diet of beans and broccoli have helped to eliminate the diarrhea. But, I feel like the constipation is getting worse. I had internal hemorrhoids and I am afraid they have become external. There is usually blood in my stool if it is formed or diarrhea. When it is diarrhea, it is usually blood and mucus. Now, I have noticed a white fuzz surrounding the stool. My GP doesn't seem to care and wants me to discuss this with a GI Doctor.
My ESR and CRP are highly elevated so we know I have a ton of inflammation and infection in my body. Sometimes I can sleep for 16 hours straight and still wake up tired and worn out. I almost always have a rash on my face. I also found out last year I have Asthma caused by allergies. I notice if one is triggered the other one usually flares. So imagine sneezing and coughing and trying to keep snot, mucus, tears, pee and poop from exploding from your body simultaneously. Some days I look a hot mess.

I guess my biggest questions or fears is do new symptoms appear and the disease gets worse over time?

How or can you date with this? How do you explain that you will abruptly walk away and be in the bathroom for quite awhile. Or that you can't eat certain things.

Somedays I want to throw myself a pity party for one and others I realize it is not that bad. Pain is manageable and I just need to know where bathrooms are located.
 
Hi Amy. Sorry to hear this. By your symptoms, it doesnt sound mild at all. Please consult a GI soon without any delay and look at your treatment options. Better late than never. Hope you feel better soon :)
 
You ain't seen nothing yet.......Hope you NEVER encounter Setons....the older I get .....I seem to have more problems..just the way the human body is geared..Hope you get it under control....enjoy everyday your in remission.........I'm 55.

2 Setons
Remicade/failed...stroke symtoms rehab for 5 months
Entyvio...currently...works very well for me.
Steriods
6mp
mulitude of pills betwen my 20's and 30's
diagnosed when I was 20.
 
Hopefully you can get started on some meds that will help your symptoms. There are so many crohn's meds out there. They do not cure it, but they can help with the symptoms. Hopefully you can find a medicine with your GI that will give you more regular bowel movements and less inflammation. Surgery is also an option for many of us. It sounds scary, but it can really really help. I had a bowel resection last year, after having around 30 BMs a day for some time, and it really helped. They just took a section out and sewed the intestine back together.

So to answer your question, yes, the crohns can change and worsen over time, but it can also get "better" with drugs, surgery, diet/lifestyle changes.

As far as dating, I have dated with Crohn's. I don't date alot, but I have had 2 serious relationships while my crohns was bad. Both boyfriends were loving and understanding. One had a 2 bathroom apartment, and that was helpful--i basically had a bathroom to myself when i stayed at his house.

So I think your next step is perhaps getting on some medicine, if you aren't on it already. Have you tried any meds yet? A temporary prednisone course could help get your symptoms under control initially--but that is just a temporary fix. Talk with your GI doctor about it.
 
Welcome to the group. To answer your question, my Crohn's started in the small intestine. It is now in my colon. I started out with Crohn's. Now, I have more autoimmune diseases. I hope they get you in the right mixture of medicine and get it under control soon.
 
Top