Community Forum

I was diagnosed with ulcerative colitas in May 2009 after 7 months of rectal bleeding. Before you yell at me for not seeing a doctor right away, I have an (what I think is good) excuse. I grew up watching my father battle ulcerative colitas. His accidents stick closely in my mind. Then, while I was in college, I remember sitting in the waiting rooms as he had a series of 3 surgeries to take out the deteriorated intestine and reconnect. In September 2008 my father lost his life - not to ulcerative colitas but to throat cancer (never a smoker or drinker). But, in my mind, I associate his death with one of the things I remember him with - ulcerative colitas. I know that is not what took his life!! I guess what I am really saying is that I am scared, very very scared. I no longer have my father to help educate me and have been unsucessful in finding support groups around my house. I am only 28 and the mother of two intelligent and wonderful young boys (6 and 2). My husband doesn't understand what is happening and each time I have a flare-up he tells me I need to find a "better" doctor. I was hoping that there is someone out there (anyone) who can help in educating me and let me know things will be okay! I just need that positive reinforcement! Thanks for listening to my story. Oh yeah, I am 350mg Colazal x3 and just started Rowana. Thanks.

 Reply posted for mjgsgirl.

First, I want to give my sympathy to your family for the battle for which you witnessed growing up with your dad.   We actually have a bit in common.   I am a mom of 2 (ages 13 & 9) and I too stood by my dad with his fight with Diabetes.  I truly believe families that endure something like we have are much stronger than many others.

It is going to be ok.    You and your husband need to be on a mission of sorts.   A mission to learn everything there is about the illness.  Become active with your local CCFA chapter, maybe join a support group.  This web site in itself has lots of info/advice.  Knowledge is power.  Learn together.

My daughter is the reason why I joined this forum.  As a newborn she was sick.......though the drs blew it off too many times.   After several tests, mis diagnosis and trips to the hospital, we were given the correct diagnosis.   Crohns Disease.   Who the heck ever heard of that??   Not me.   After my feel sorry for us period I decided to be strong and not allow this disease to define her.  I read everything I could get my hands on. 

I am happy to say she is now not a sick newborn, but a high-achieving 9 year old.  Who is living a very active life and who defines Crohn's disease.

Be well and know you are not alone.  When given lemons.......make lemonade.

Lizzies Mom

 Reply posted for mjgsgirl.


If there is anything that I have learned from beiing sick all of the time, is that there are better days.  Things will get better!  I have a 3 year old little girl, whom has made my life worth living when I have felt my lowest.  I would use this to your advantage and know that the love from your children will make you better.

When I was diagnosed with Crohns in 2007 I had known there had been problems considering I had been going to the bathroom 10-15 times a day for a couple of years til I wasting away to nothing.  So, I know how you feel knowing you had been sick and didn't see a doctor.  All-in-all, there are brighter days ahead.

 Reply posted for mjgsgirl.

What area are you in? I'm in Sonoma County

 Reply posted for mjgsgirl.

I understand!!! The first thing you need to do is thoroughly educated yourself and your husband. I've had UC for 9 years and I've finally gotten use to the idea that I have a disease. I have 3 kids 8, 4, 1 and it's a real challenge. My husband said the same thing to me when I got really sick   1 yr after I was diagnosed. He said that he couldn't believe that I could be that sick. After I got better, TOGETHER we educated ourselves and he has really been a big part in helping me to stay healthier. Some days I can take on the world and other days I can barely make it through the day. I've been on Asacol, Immuran, Steroids, Antibiotics, Vitamins, I've had blood transfusions, iron infusions, shots, done enemas, suppositories, homeopathic remedies. I've been hospitalized and had to home care. You have to do the research and see what works best for you. I also have a great team of Dr's to consult with. My GI, Gyno and a Hematologist. The more you know, the easier it will be to cope and not let this disease take over you. I don't want you to go through what I did(the depression and the denial). YOU HAVE TO GET TOUGH!!!! 

 Reply posted for mjgsgirl.

My brother had UC years ago at 32 years old (19 years ago).  My daughter was diagnosed with UC 2 1/2 years ago at 16.  My brother only drank some sort of powder but was in a constant battle with UC.  He passed away a year later after developing a cold and got pnemonia and passed away within a week but it's not because of UC.  When my daughter was diagnosed, my mother was very worried thinking the worst.  My brother had a great doc who is still in practice today.  My daughter has a great doc too.  The meds and research that ccfa has done is unreal compared to how it was 19 years ago.  My brother's meds were only some sort of powdery mixture and drink and didn't work for him.  Now there are so many more meds for UC.  Plus there's probiotics and alternative meds and there are findings that diet may play a role to help.  One of my daughter's docs said within 10 years there will be a cure for IBD.  I think the best thing you did is to find this website.  CCFA is great and the people on this website are so helpful.