• 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.

New to the forum, not new to Crohn's!

First time posting, and wanted to share my story. I've been diagnosed with CD for about 6 years now, but Ive had symptoms since age 9. When I graduated high school, I dropped about 40lbs in a little less than 3 months. I was in nursing school, so I attributed it to stress, of course. When I was 21, I began getting anorectal abscesses with fistulas. I was basically given flagyl/cipro, that's it. They mysteriously drained and healed, so I went about my merry way. Graduated nursing school, and went to work for a colon and rectal surgery group. Ironic right?? They treated me like family. Slowly, I began to lose weight over the next few years, and by the time I was 23, I was only 80lbs. I went to my primary care( I left the surgery group due to moving) and she suggested that I try cutting out gluten. I did, and I began getting SEVERE low back pain every time I had a BM. I went back to my MD, wanted a referral, and she gave me pain meds and a referral for psych. SHE ACTUALLY THOUGHT I HAD AN EATING DISORDER!! And she thought I was seeking pain meds. I was so discouraged. I tried my hardest to cope, but the day came when I was in so much pain, I couldnt talk. My abdomen was distended to about 6 months pregnant, and no BM for a week. I called my MD, no return. I then called my surgeons I worked with a few years prior. Frustrated, one of them actually met me in the ER. At that time I began to vomit stool. Turns out I had obstructions in 3 different area, fistulas into my spinal column and liver, and basically was given 1 week to live.
I was terrified, but I knew my surgeons work, and theyre amazing. I was taken into the OR, with a planned resection and a 1.5 hour surgery. It turned into 8 hours with one code, extreme blood loss and shock and an ileostomy. They basically could not believe that I was still alive. When they opened me up, it was like a war zone. I spent 2 months in the hospital, one of which was in the ICU. They didnt think I would make it, prognosis was very fair.
My disease was so progressed and I was so ill that I couldnt be placed on any oral meds or steroids. I was immediately placed on Remicade and have been on it ever since. My diet is healthy, limited gluten and dairy. Although Its hard to stay on a diet when youre in remission!!!! I do have my problems with fatigue, insomnia and tummy pains due to stress, but who doesn't? I am searching for alternatives in diet and stress reduction which is why I joined.
I am currently an RN and Im working towards my Bachelors to be an Enterostomal Nurse. I want to help my local ostomates :)):sign0144:
 

David

Co-Founder
Location
Naples, Florida
Hi Thunderstruck and welcome :) Thank you for seeking us out and sharing your story :) And my god, what a scary story it was! Thank goodness for your amazing colorectal surgeon friends! Do you know if your primary care doctor was ever told about how she dropped the ball so much you almost died?

That you're experiencing fatigue makes me wonder though. Do you have your vitamin B12 levels tested? As someone with Crohn's Disease who had a resection, the probability of you being deficient is very high and that can lead to fatigue. If you do have your levels tested, what was it the last time it was checked?

Again, welcome to the community :) And best of luck with your bachelors!
 

Angrybird

Moderator
Location
Hertfordshire
Hello and welcome to the forum :bigwave: What a truly horrendous time you have had, I am so pleased that you have been able to pull through it and that the tum is doing well on the Remi (wahoo!).

Definetly check out diet and fitness forum if you haven't already as there will be info here about what others are doing here food wise etc.

AB
xx
 
Thank you both!! I've been doing a lot of reading in the diet and nutrition area. It really is helpful! I've decided to quit gluten completely, and absolutely no caffeine, which is hard on a double shift and studying :-(

And thank you for the b12 advice, I do take an oral one with intrinsic factor, but my labs show low 300s for B12. Looks like its back to injections.

As for my old primary, My surgeon personally delivered the news to her. He is quite intimidating I might add :) She no longer practices in my city, apparently there were more than one lawsuits against her for malpractice.

My goal is to either reduce or discontinue Remicade at some point, I would like to have a baby in the next couple of years...fingers crossed!

Thank you for the warm welcomes
 

David

Co-Founder
Location
Naples, Florida
Your surgeon friend sounds awesome :)

That you take oral B12 with intrinsic factor is very interesting to me. Does the pill have intrinsic factor in it or do you take two separate pills? Can you share the name of it? I wasn't aware that they provided supplementary intrinsic factor so would love to learn.

I hope your dietary changes help! :)
 
My Primary is an internal medicine MD as well as holistic. The brand is Metagenics, B12 with Intrinsic Factor, 1000mg. A lot of us lack that factor to absorb B12. She tried me out on it for 6 months, and my levels are not high enough for her standards :) Looks like Ill be taking some trips for the injection!
 
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