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Crohn's and Short Bowel Syndrome

Hi, all! I was diagnosed with Crohn's in 1990. First surgery was a resection of my colon a Few yrs after diagnosis. Then, in 1996, I had a subtotal colectomy with an ileostomy. Four yrs later, I was doing rather well so, my surgeon and GI agreed it would be ok to reverse the ileostomy. Well, 3 months later, I flared up like never before. That's when I was put on Remicade. I did rather well for 5 yrs. But, by 2006, I was very sick again. We tried other meds....nothing worked well enough to get me to remission. In 2008, another ileostomy was done. This left me with about 3 inches of colon....my "bridge to no where".
This past Oct, I went to Shands in Gainesville and the surgeon there thought reconnecting my ileostomy could possibly help reduce the diarrhea I've been having since the last ileostomy surgery. So, I had the surgery and was once again reconnected.
The surgeon went out to my family during the surgery saying she was "shocked" at the length of my small intestine-- just under 4.5 ft! Nowhere along the line have I been told of my small bowel being so short!! But, this explains the chronic diarrhea!!
So, now I'm reconnected and constantly in the bathroom. 15-20 per day. I'm on Humira-- one injection per week.
I take in psyllium husk and it does help to bulk things up a bit.
I've lost 25 pounds on an already skinny frame. (I'm about 108 and 5'6")
I haven't been able to work since October.
I'm sad. But, I try to remain optimistic. I'm known by my friends as an "inspiration" and "strong".
I'm fortunate to have a wonderful husband and family.
Well, that's my story in a nut shell. I hope to be able to contribute to this forum with my experiences and maybe get some knowledge from the members here.
((Gentle hugs)) and lots of light to you all!
 

Trysha

Moderator
Staff member
Hi Warrior Girl,
You certainly chose the right name.
What an awful time you have been having and so protracted over the years.
Hopefully you will continue to improve and have less bathroom aggravation as time goes by.
It is hard work( to say the least) to maintain an optimistic outlook and you certainly seem to have the right attitude.
Taken by the yard life is hard---taken by the inch life's a cinch.
I share you pain.
Feel better soon
Hugs and best wishes
Trysha
 
I hate that anyone else is going through this but so thankful I found this forum!
Attitude is so important in this life-- sick or well. I like the "yard/inch" saying and shall add it to my mental positive affirmations :)
My best!!
 
just want to say hi and let you know i'm thinking about you! i am undiagnosed and cant offer any advice but i can pray that you find relieve reaaly soon xx
 
Dear Warrior Girl,

I would like to first say that you are very brave and I am sorry you have had to experience this. I do have a lot of advice to offer if you are interested. You could check out my blog- Capple House and see if it would be helpful. My daughter has been very sick for 14 years. Taylor does have Epilepsy with Crohn's. She has had a complete colectomy and other surgeries as well. My blog is a little out dated, but there is a lot of information there. Taylor is a raw-vegan now at 16. She is completely natural as the continued drugs for years landed her with several other diseases. If you would like to chat, please send me back a message. I would be very happy to give you a good list as to changes we made and diet. Taylor also went to the bathroom 15-20x/day. She is now down to 5-10. Depending on what she eats and timing of day, she has learned to control this. The good news is, there is HOPE! Crohn's/Colitis no longer defines her. She has not had a flare in 3 years! She is drug free and we manage her epilepsy with molasses/yoga and mediation. Keeping hydrated, stress-reduced and rested is a great way to manage these conditions. I wish you well and would love to help you in any way possible. My daughter Taylor would be able to communicate with you as well.

Blessings to you and know that there is hope to live a completely normal life.
 
What changes in diet helped the bathroom trips? I take it they removed your daughters whole colon? I had my whole colon removed except my rectum and thinking about reversing it.
 
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