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Crohn's Disease Forum » Your Story » That Pain in the Butt


04-21-2006, 01:59 AM   #1
One Awesome Broad
 
That Pain in the Butt

That's how it started for me - Crohns that is. I had two rectal surgeries in 4 months when I was 27 but no one realized that the abscessed fistulas were symptoms of something much more serious. I was very ill with typical symptoms for 3 years until I was finally diagnosed. At one point prior to diagnosis, I feared I might have colon or rectal cancer. I remember feeling relieved with the diagnosis - it was "only" Crohns. I was 30 with a two-year-old daughter and a husband who was rarely around because he travelled. I did the drugs and would still be sick - and normally I was trying to take care of myself and my daughter. I had to take Prednisone - a very nasty drug as most IBD patients know but add this little twist to the picture: I'm bipolar II, rapid cycling so Prednisone sends me into a tail spin up and down and so quickly.

Eventually, I was put on Remicade to help the disease. It worked great the first time. I went almost 3 months before needing another infusion. At the same time, my husband and I noticed that our daughter was sick a lot at school and complained of gut pain. Turns out she wasn't trying to copy mom, she really had ulcerative colitis - diagnosed at age 10. So now there would be two of us at home sometimes, sick, looking at each other when the dogs wanted out as to whose turn it was to get up. She is doing very well now - a senior in high school - but she is also careful about what she eats and knows her limits. She also has official permission to use the bathroom whenever she needs without the need for a hall pass. One less stress.

I started having more frequent Remicade infusions and I sometimes had a weird head drop sensation with it. An MRI done on my brain showed a white spot which was noted but nothing really done about it. The infusions were every other month and I managed to get ill after every infusion. It got to the point that my GI specialist added 6MP to the mix. It interacted with my lithium and set off diabetes insipidous that is a side effect of lithium. I looked and felt like a wreck. And that spot on my brain, well it was still there. A friend of mine saw me and pleaded with me to see a naturopath she knew. Turns out the naturopath also has Crohns disease and we can talk the same language. She even knew my GI specialist and spoke with him about trying something else. Now I am off all the Crohns medications and manage my disease through diet and nutrition - no wheat and no dairy. I take regular walks and will begin bike riding in about a month. I haven't had to lose any of my colon or rectum, although I won't be surprised if I will have to have the rectum resected due to all the scarring.

On a personal, non-medical note, I am enjoying a full-time job again as a marketing proposal coordinator. My previous employer, particularly my manager, was reluctant to move me from 30 to 40 hours because I had Crohns (gee, what if I got sick?). I am recently divorced - an amazing stress relief for me which no doubt will help my Crohns. All those years of taking care of myself and my daughter, well, it's no different now just that I don't have that third party to take care of as well. My daughter is healthy and is with me a little over half the time. I have a large, Maine Coon cat (around 19 lbs) who is great company and a small fish tank. I live in an apartment - a move I made because I knew that physically, if not financially, I could not take care of a house on my own. Well, I could but I'd wear myself out and then get sick. You learn these things with time.

I love to write, love classic muscle cars (but own a new one) and am a huge Green Bay Packers fan. My daughter and I like to go to classic car shows and musicals together (she is an oboist but plays other instruments as well). So it's a nice balance of fun and games and sit back and relax.

I was just thinking about this being a forum through Canadian channels. I think all my really good Crohns recipe books are from out of Canada. What a coincidence - maybe it's the difference in now the disease is viewed and approached in the states versus Canada.

Amy (One Awesome Broad)
Bellevue, Washington
04-21-2006, 02:25 AM   #2
ReeRee
 
Glad to meet ya! Wow what a story! It's really amazing for me to be reading all these stories. I can't wait to get to know you better.

I'm Robbie, you can call me Ree for short. It's easier and faster to type..lol.
04-21-2006, 09:33 AM   #3
jyarmo
 
Hey Amy,

Thanks for sharing! It sounds like the diet you follow is similar to the one in "Breaking the Vicious Cycle". Have you read that book?

It's great that you and your daughter are able to battle your Crohn's so well.
I'm glad you joined this forum!
04-21-2006, 10:52 AM   #4
doubledown
 
Wow it is pretty neat to see that you have been able to control the disease without medications. While it seems like there was some bumpy times in the past it looks like clear sailing ahead for you (hopefully).
04-21-2006, 03:36 PM   #5
cookey
Mama Crohnie
 
cookey's Avatar
 
Join Date: Apr 2006
Hi Amy..it's a great pleasure to meet you. What a truly inspirational story you have. Between you and I and Ree...WOW!! I am thrilled to hear your life has changed for the better. Keep up your great spirits hun.
04-21-2006, 04:06 PM   #6
Suzy308
 
Hey Ree Ree, I am vert inspired by your story. You are one strong chick!! I hope evrything is going good still. I'm glad we're here and I look forward to chatting with you sometime. Keep your head up.
04-21-2006, 04:10 PM   #7
ReeRee
 
Same to you Suzy! Isn't it just an amazing feeling to be in the company of all these wonderful people who know EXACTLY what you're talking about?!?!? This forum ROCKS!
04-21-2006, 04:36 PM   #8
cookey
Mama Crohnie
 
cookey's Avatar
 
Join Date: Apr 2006
I'm loving this more then you all know...I looked high and low for a good place to share thoughts, even though I'm well now...I still like to listen to others, and try to help at all if I can. I can't thank Mike enough for his great efforts in starting us out on the right path, to sharing our stories...and hopefully making long lasting friendships.
04-21-2006, 05:56 PM   #9
ReeRee
 
Cookey, I'll second that emotion! Thanks MIKE! You rock my friend
04-21-2006, 11:33 PM   #10
One Awesome Broad
 
Biggest challenge sometimes is making sure that there isn't wheat or dairy in stuff. I do a lot of reading of labels in the grocery stores these days. While I have given up a lot of "fun" foods, I have learned it's just a matter of eating a different menu. And beware of red vines (licorice)! The second ingredient is wheat! What I miss most? Extra Sharp Tillamook Brand Cheddar Cheese. And soy cheese is technically not dairy-free unless it says so because most contain caselin (sp).
04-22-2006, 10:40 AM   #11
jlbastian
 
Hi Amy!

Great story, its always great to hear positive stories of personal triumph when it comes to this stuff. When I was first diagnosed, I googled Crohn's Disease and found nothing but horror stories! It scared the hell out of me!

Glad to see you back on your feet and working again
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