Crohn's Disease Forum » Your Story » Success Stories » Success I guess? lol

07-24-2011, 01:47 AM   #1
Nyx's Avatar
Join Date: Jan 2010
Location: Barrie, Ontario

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· Stoma
Success I guess? lol

Hi everyone! I've been around the forum for quite a while now and finally decided that it might be time to post my story in the success sub-forum (I'm hoping I'm not jinxing it!!!).

I was diagnosed in May 2006 with severe Crohn's in my rectum/anus area. Unfortunately, I did research online about the meds available for this disease and I picked the one that really did the least for me - Pentassa. My doctor wanted to start me on Imuran, but I had heard only of the bad side effects, so I chose the one with the least amount of side effects. In September 2009 I decided to heed my doctors advice and I started the Imuran after being in a flare for almost a year (a really bad flare, although at the time I would have told anyone that it was tolerable). Three months later I was in the hospital with a perforated sigmoid colon and distended bowel. I wound up with a permanent stoma - his name is Oscar

For most people, this would be the end of the world. When I was first diagnosed, I swore that I would never be "one of those people". And now I'm glad I am. I got my life back. Don't get me wrong, it was a huge adjustment! But a year and almost 8 months later, I don't even notice it anymore. I started college in the fall of 2010...I take vacations and not worry about where the washrooms pain, no nausea, and no meds!!! I still have yearly colonoscopies, but they're not a problem and it's amusing to see the nurses faces when they tell you roll on your side and I flash Oscar at

I'm loving life again. I have a life again. And it includes a bag. It could be worse

Crohn's Diagnosis: May 2006
Current meds: none
Surgeries: Colostomy, December 2009

"Never trust a fart." Jack Nicholson, The Bucket List

Oscar is awesome! Loving my life with my stoma (with a hint of poo)!!

07-24-2011, 02:02 AM   #2
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AndiGirl's Avatar
Join Date: Jan 2011
Location: Alaska

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Hi Cindy! I always like to hear success stories. I will admit that after having a grandfather who had a colostomy bag, I developed a fear of it. I know that's silly considering I have CD myself. When I mentioned the fear to my dad, he said, "Why should you be afraid of a colostomy bag? After grandpa got his, he felt better than he had in a long time. He felt good! It's a little inconvenience, but in return you'll feel better." I often thought of that conversation, especially when I feel really sick with my CD. Thank you for expressing the positive aspects. Hugs to you and Oscar!
Diagnosed with Crohn's Disease in 2005

Pentasa 2x500mg (4 times a day)
Zofran (as needed for nausea)
Ginger Capsules (for Nausea)
Zoloft 150 mg
Ranitidine 150 mg (2 times a day)
Entocort 3 mg (3 capsules by mouth for 8 weeks, then tapering to 2 capsules for three months)
07-24-2011, 05:42 AM   #3
To save time...Ask Dusty!
Dexky's Avatar
Join Date: May 2010
Location: Kentucky

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I love your attitude Cindy!! Always have
Mark, father of EJ

EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
Currently in the Humira Club
07-25-2011, 01:06 AM   #4
Jennifer's Avatar
Join Date: Jan 2010
Location: California

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I've always loved your attitude about it too. I've always been afraid of a stoma but after reading many of your posts on here I stopped being afraid a while back. Would be nice to not have to lay on your side for a scope. I'm always freaking out and looking over my shoulder now to make sure the doc isn't trying to start before I'm fully drugged up (just because of one bad incident). I hope you stay all clear and being off meds is a wonderful thing!
Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 75mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel (endometriosis), Tylenol 3 (Osteoarthritis), Zantac 150mg 2/day (acid reflux), Klonopin 1mg (Panic Disorder), Imitrex 25mg (migraines), Zofran 8mg (nausea)
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 19 years and counting.
08-01-2011, 12:38 PM   #5
Senior Member
margie's Avatar
Join Date: Feb 2011
What an inspiration, thank you for sharing your story.

Diagnosed with Crohn's Disease 2005
At this time have no GI doc and on no meds.
08-09-2011, 03:41 PM   #6
scotishcanadian's Avatar
Join Date: Mar 2011
Location: Virginia Beach, Virginia
Wow, I LOVE your attitude about life, Nyx! Right on to you for owning this and making it light. You're post seriously made me smile. :] You are such an inspiration!
Diagnosed with Crohn's: January 2008
Surgeries: Gastrostomy [March 2011, Reversal September 2011], Pic Line Insertion [Multiple, most recent: March 2011, Reversal April 2012], Iliestomy [May 2013]
Failed Meds: 6mp, Remicade, Humira, Methotrexate, Flagyl, Thalomid, Cimzia, Elemental Diet, Probiotics, SCD Diet, Pentasa, Prednisone, and Entocort
Current Meds: Morphine (as needed occasionally), Pheneregan, and LDN.
08-23-2011, 11:24 PM   #7
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Join Date: Oct 2010
Location: Houston, TX, Texas

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Hi, Cindy!
Do you know, you were the very first person I heard from on this site? I was facing possible surgery and was so flipping scared. Your honest, frank answers to my questions helped so very much. Yes, you and Oscar are a success story!
My heartfelt thanks to you,
09-08-2011, 10:05 AM   #8
Senior Member
InkyStinky's Avatar
Join Date: Feb 2010
Location: USA

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Hey Cindy! I'm so glad to hear how well you're doing! You were such a great encouragement to me when I was freaking out about the warfarin craziness. Congrats about going back to school!!!
IBD diagnosed 1990 @ 8yrs old (current dx: Crohn’s); Blood clots 12/2009 (DVT, bilateral PE)
6MP: 50mg/day

Ethel: “So, is everything okey-dokey?” Lucy: “No, it’s inky-stinky” ~ I Love Lucy

-Are you looking for a new treatment option for your Crohn's disease? If so, I suggest you look into the ongoing clinical trial by Qu Biologics for their SSI treatment. Click here for more information or to help spread the word.
09-10-2011, 10:06 AM   #9
Pooh's Avatar
Join Date: Sep 2011
HI'm new today and needed to read your message. How wonderful for you - thank you for sharing hope with us.

I just saw "with a hint of poo" - maybe that is the reason my nickname is "pooh" because I'm full of it! Too funny and apropos.

Last edited by Pooh; 09-10-2011 at 10:09 AM. Reason: humor
09-10-2011, 10:09 AM   #10
Crohn's 35
Inactive Account
Join Date: Oct 2009
Hey Cindy you are an amazing person! (we met 1.5 years ago, ) and you are an inspiration to others. So for your reward, go to Timmies and have their new Cinnamon french toast bagel...... it is so good had my first one yesterday! Congrats on being postive...and going back to school!
09-10-2011, 12:10 PM   #11
Astra's Avatar
Join Date: Jan 2010
Location: St Helens, Merseyside, United Kingdom

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Ah Cindy, our ultimate Bag Lady!
We joined at the same time, seems so long ago!
You've done amazing Cindy and I'm no longer afraid of having a stoma, you're my inspiration! In fact, everyone here with a stoma is so inspirational!
Hope your remission lasts forever


Dx Crohn's in TI 2005 symptoms for 15 years prior

BEEN ON -Azathioprine, 6MP, Prednisolone, Pentasa, Budesonide, Metronidazole, Humira, Methotrexate,

NOW ON -Amitriptyline 25mg
21/02/14 Right hemicolectomy surgery!/profile.p...4208290&ref=ts

No-one should make you feel inferior without your consent!


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