Crohn's Disease Forum » Your Story » Belated Introduction!

04-18-2014, 01:50 AM   #1
theOcean's Avatar
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Location: Toronto, ON, Canada

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Belated Introduction!

I realize this post is pretty belated considering how much time I spend on the forum, but I figure it's still a good idea to share my experiences.

Hello, I'm Ocean. I was diagnosed originally in 2011 with Ulcerative Pancolitis. Crohn's runs in my family (my father has it and so did his father), so I knew within days of getting symptoms that I had either Crohn's or Colitis.

Despite knowing this, and getting bad enough symptoms, it never occured to me to actually go to the hospital about my flare because I had never experienced one before. My father's input was largely unhelpful, because he never researched his illness and doesn't believe in doctors. But eventually I got sick enough that I went to the hospital, and ended up staying there for five days. I got a sigmoidoscopy-turned-colonoscopy that they took biopsies from, and was diagnosed with Ulcerative Colitis. I was on solumedrol in hospital (and morphine), and was sent home with a prescription for Pentasa and Prednisone.

And for awhile, I was fine. Prednisone kicked me into remission that lasted for a year, and other than choking down the chalky Pentasa pills that I was convinced did nothing, I didn't really feel sick. I ate how I wanted and was able to do everything as normal.

I was on prednisone for about four months, but what stayed with me longer was the cystic acne it caused. It was so bad and so embarrassing to me that I asked my GP if I could be put on birth control to help treat it. She agreed, and put me on Alesse. It made me horribly sick. I would vomit constantly -- at least once a day -- and couldn't keep down food. I had so much acidity in my system and was starving, and rapidly lost weight.

At the same time, I had a recurring nerve problem with sciatica, which left me in so much pain that I was totally immobilized. I couldn't walk, couldn't roll over in my own bed -- everything was pain. I went to my GP again, and she gave me a heavy prescription of naproxen sodium. Not realizing it was bad for someone with UC/CD, I took it, and it was the only thing that allowed me to function. I could actually walk again and move again without pain.

But, with the combination of these things, it woke up my UC and sent me into a flare. I would go to my GI about the pain and constant bowel movements, and he just kept throwing prednisone at the problem as though it would go away like the first time. It didn't. As soon as my taper got low enough, my UC would flare back up and I'd go back to being as non-functional as before.

I obviously dropped the birth control pill, because it wasn't worth how sick it was making me. I stopped taking the naproxen sodium, because it managed to help with my nerve -- but obviously at a cost.

Eventually, I was sick like this for a year. I encountered someone online who mentioned he had Crohn's and was on Remicade, and we became close friends. I asked my GI about biologics, since I felt Pentasa did nothing for me. We went through the process to get me on it, but I always got such severe skin reactions and my GI never did any follow-up on how I was doing on Remicade. My UC wasn't affected by it at all, and within months, I was back in the hospital.

I ended up in the hospital three times in one month. The first time, I was just given Prednisone and let go. A week later I was back, and stayed for five days and given lots of dilaudid and solumedrol. I stayed out for awhile, but noticed increasing pain when I sat down, but thought it was just hemorrhoids, and dismissed it despite the fact that I was suddenly bedridden and so sick and low on iron I couldn't even stand up or get out of bed.

Eventually, my mother dragged me to my GP to confirm if I had hemorrhoids or not. She immediately recognized what I had was an abscess, and called my GI and sent me to the hospital. I was so pale and dehydrated that instead of waiting in emerg, I was immediately thrown onto a stretcher and outfitted with an IV.

It turned out that I had a terrible perianal fistula that went all the way up to my stomach. It was lanced and drained that night, and I had a seton put in place. Not much was explained to me at the time, but I suddenly had a new diagnosis: Crohn's Disease, because I developed a fistula.

I was in the hospital for eleven days before they finally allowed me to go home, and was on tons of medication. They confirmed that Pentasa really never did anything for me because my case was so severe, and they also confirmed I was highly allergic to Remicade. I dropped my old GI, who was too passive, and went with a new one -- the GI who was looking after me in-hospital.

It took a long time to get past the anxiety of having my fistula, not to mention recuperating and getting better. I had dropped from 130 pounds to under 100, didn't have the strength to walk, and was very weak. But my family and my SO took wonderful care of me, and I quickly improved.

I finished a quick taper of prednisone, and felt fine without any other medications already. My GI put me on Imuran in August 2013, and later added Humira in November to help treat my fistula. In December, I finally was taken off my antibiotics (Cipro and Flagyl).

Now, I'm comfortably in remission. I'm getting my seton out at the end of the month. I have no antibodies to Humira. I feel like I'm doing really well, and have even started exercising with a personal trainer. I managed to put my weight back on, and I actually feel healthy.

I browsed this forum for a long time before I joined it, and it's given me a lot of comfort and reassurance while I was dealing with all my turmoil from my Crohn's. It especially gave me comfort when I was dealing with my fistula, and had little-to-no information on it from my doctors. I'm very happy I joined this site, and have been able to become a part of this community.

Now, I would like to try my hardest to give back, and help others who have IBD like I do. Outside of the forum, I've applied to volunteer with Crohn's and Colitis Canada, and really want to get involved with the community in my city.

For those that took the time to read this: thank you, and I appreciate it.
Diagnosis: Fistulizing Crohn's, 2011 (originally Dx as Ulcerative Pancolitis)
Past Medication: Pentasa, Remicade, Prednisone, Imuran
Current Medication: Humira (biweekly), 100mg 6mp
Unrelated Medication: 36mg Concerta, 75mg Pregabalin
Currently: In remission!
04-18-2014, 04:42 AM   #2
Senior Member
pink&green's Avatar
Thanks for sharing Ocean
Hubby Diagnosed 12/15/90
1/3 colon removed
12 inches of small intestine removed
Appendix removed
2007 Hemorrhoids removed
2006 resection:
2005 first perianal fistula(removed 3x & lanced still keep coming back)
2014 partial nephrectomy (stage1)
Previously medications:Humira-anaphylaxis reaction, Remicade, Cimzia, Entyvio
Current medications:
B-12, 6mp, flagyl, prednisone,
Tramadol(fistula & joint pain)

04-18-2014, 11:18 PM   #3
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afidz's Avatar
Join Date: Jun 2012
Location: Mckinney, Texas

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Thanks for sharing !
To me it sounds like had your GI paid proper attention to you and treated you with something other than steroids that a lot of your troubles could of been avoided. Are you still seeing that GI?
Its always GREAT to hear that someone is in remission. I think it gives others a sense of hope. Something to look forward to. I hope that the seton removal goes well and you continue on your path of doing well!
Crohn's since 2007
15 Abdominal Surgeries since 2008
Severe Non-repairable abdominal hernia
Ankilosing Spondylitis
Inflammatory Arthritis

Failed meds:
Asacol HD
04-18-2014, 11:22 PM   #4
theOcean's Avatar
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Location: Toronto, ON, Canada

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That's how I felt about my GI, too. I've since moved on to a new one who is much more attentive, and who has made me feel really confident about staying in remission.

And thank you very much! I have my appointment to get it removed on the 28th, and I'm very excited. When I told my mother the news, she gave me a huge hug, haha. It's just really wonderful to think that the pain of dealing with it is finally over.
04-18-2014, 11:50 PM   #5
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afidz's Avatar
Join Date: Jun 2012
Location: Mckinney, Texas

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I bet you are excited! I have never had one, but I have had other things attached to my body for extended periods of time. Telling me that I didn't need it anymore was like Christmas I swear.

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