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Crohn's In Alaska

AndiGirl

Your Story Forum Monitor
I am so excited to have found this forum. I have had some very tough times with my CD. Digestive troubles seem to plague my family. Here's my story.

I started getting nausea and stomach upsets off and on throughout my junior and senior year of high school. I didn't think too much of it then. I thought it was the stress of high school, getting ready for college, living with my parents, etc.

Throughout my college days, I suffered with bouts of anxiety attacks, stomach upsets, nausea, diarrhea, and cramping pains. I noticed that my pain was usually on the lower right side. I went to different doctors many different times. I was put through a battery of tests and they couldn't find anything. My parents, who are old fashioned, hard working folks, said, "It's not normal to have that many stomach aches. There is something wrong." That's really saying something, as my parents are the type of people who have no patience for whining or weakness. I tried to keep my pain to myself much of the time. When I went home for breaks during college, they noticed a change in me and my health, and almost instantly became more sympathetic and understanding. My father said a few things that really started me on my way to a diagnosis. My father grew up in southeast Alaska, a small community near Juneau. His father was a fisherman. My father was the 12th child out of 13 children. My grandparents were hard workers who didn't have luxeries, which included health care. My father said that grandpa had terrible stomach aches. He took antacids on a daily basis and would frequently throw-up while he was fishing with his sons. My grandfather was a commercial fisherman, and when he was out at sea, there was little that he could do but ride it out when he had digestive flare-ups.

My grandpa did that for many years until he got really sick and needed surgery. They were planning on cutting the ulcerated intestines and sewing together the healthy parts. As it turns out, my grandpa's intestines were a mess! They did a complete colectomy, and removed part of his small intestine as well. Grandpa wore a colostomy bag for the rest of his life, but his pain from his disease was gone. He was in his late 60s when he had the procedure, and lived a good twenty five years later. My father wasn't sure if grandpa had Crohn's Disease or Ulcerative Colitis, but he thinks he had Crohn's because there was a skip pattern of disease in the intestines. When he passed away at the age of 89, it wasn't Crohn's related.

My father was a healthy, active, and athletic young man, when he married my mother. They were young parents. I was born, but was too young to remember. My father was hospitalized with a perianal abscess. It was so bad that he needed surgery, followed by many days in the hospital. My dad was never diagnosed with inflammatory bowel disease; however, my mother and I have our suspicions.

My brother has Crohn's Disease. He has had numerous perianal abscesses and had surgical procedures for them. My sister has her own digestive troubles as well.

I was finally diagnosed with CD in January of 2005. This was after years of pain, worry, and numerous misdiagnosis. I was told that it was probably duodenal ulcers, irritable bowel syndrome, stress and worry, depression, female troubles, you name it. I mentioned my family history, but I wasn't taken seriously. I was told that I looked too healthy to have that. That was before I lost a lot of weight.

My life is much better now that I have a diagnosis; however, I am still struggling with my lifestyle. Not being able to eat what I want has been the biggest adjustment. Knowing that I can flare at any time in another thing that I have to prepare for. I am a mother with two small children, and when I don't feel good, it can be very difficult. I still need to be there and be strong for my children. This disease is all encompassing, and can really be a bully. My main symptoms are: constipation, cramping, partial blockages, adhesions, joint aches, mouth sores, tons of nausea, diarrhea (after the constipation), burning pain in the intestinal areas.
 

Cat-a-Tonic

Super Moderator
Hi Andi and welcome to the forum! I get so mad when I hear stories like yours, with your symptoms AND a strong family history of IBD, and they still tell you for years that it's IBS or depression. It's so frustrating how little some doctors seem to care (or know). I'm glad you were finally able to get a proper diagnosis.

I never met my grandfather, but he sounds similar to yours - I hear stories from my mom and my aunt & uncles about how my grandfather would pop tons of antacids and always had a "bad" tummy. He died from colon cancer - most of the people in my family suspect he had undiagnosed celiac disease, but I really wonder if he had IBD. My great-grandfather on my father's side had UC, but other than him there is no confirmed IBD in my family. But like you've said, having a family history doesn't mean they'll take IBD into consideration if they can just say it's IBS and send you out the door. (I'm still undiagnosed, so this whole thing is pretty frustrating to me!)

I'm glad you found the forum, there are some really great and supportive people here. Welcome!
 

AndiGirl

Your Story Forum Monitor
Thank you JenJen and Cat-a-Tonic. This seems like a friendly board. I was nearing my wits end until I found this forum. The only ones who understand are others with CD or UC. I love my brother, but there's some things you just can't talk about with a man, who is also your family member.
 

Astra

Moderator
Hi Andigirl
and welcome

We have a lot in common, me and thee!
All your mis diagnosis, I've had it all, and then some!
Glad you found us too, lots of friends here for you, you're no longer alone.
lotsa luv
Joan xxx
 

AndiGirl

Your Story Forum Monitor
Thank you Joan! I've read many of your posts, and it does sound like we have a lot in common. I am American, but my father says he has British ancestory as well. My hubby is Irish, Scottish, and English. I am thankful to be here and feel so welcome.
 
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