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06-21-2011, 11:24 PM   #1
Jennifer
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remission for 17 Years And Counting

Diagnosed when I was 9 years old 20 years ago. Have been in remission since my resection in 1999.

My GI docs: I saw Dr. Ricardo Castillo up until my resection (8 inches of TI removed) who's a GI at Lucile Packard Children's Hospital at Stanford California. He's the best GI I've ever had (my current one, Dr. Thomas Hsia (pronounced "shaw") is ok but we don't have the same history of friendship as my old one).

Schooling: Since my resection I finished high school, community college, undergrad and grad school so I could become a teacher (I'm not yet but will be some day).

Treatment after resection: I was fully tapered off of Prednisone and Budesonide/Entocort and took 2,000mg of Asacol per day (500 2x/day) and 65mg of 6MP. I took the Asacol and 6mp at those doses for 10 years until my most recent GI took me off of Asacol entirely and lowered my 6MP dose to 50mg.

Current Treatment: Currently I'm only taking 50mg of 6MP to treat Crohn's. I was taken off Asacol over 2 years ago because my new GI doesn't think I need it anymore since I'm doing so well. We've both agreed that going off of medication entirely will only invite another flare so I'll be taking meds for the rest of my life which I'm perfectly fine with because I've had very few if any side effects from most of the drugs I've taken for Crohn's. I also take Lomotil as needed and have monthly B12 shots as I don't absorb it well since my resection.

Edit: Current treatment is now only 6MP 50mg.

Diet/Exercise: I DO NOT follow any particular diet plan and the only times I ever did was before procedures or during a very bad flare. I also DO NOT exercise as its a lot of work, boring and makes me tired. :P Well and I'm also dealing with a bout of depression but I'm working on that.

Flares: I've have 3 flares in total. The first one at 9 years old I was bleeding and taken to the ER when I got a diagnosis after 2 months of being hospitalized. I was treated with Azulfidine, Prednisone, Iron, and Folic acid. My GI was 4 hours away and I saw him about 2 times a year. My second flare at 13 years old left me hospitalized again and I was taken off Azufidine and put on Asacol, Prednisone and 6MP/Purinethol/Mercaptopurine. My third flare at 16 years old was treated with the highest doses of Prednisone, 6MP, Asacol and Budesonide/Entocort for my body weight for over a year before they decided to do a resection as the medication was not working.

Procedures/Surgeries I've had: Cat scans (with and without contrast, MRIs, Barium X-rays (both swallow and enema), Colonoscopies, Endoscopies, Ultrasound, Central IV/Porta-cath, and Bowel Resection. My resection site got infected and I had to get it packed with gauze twice a day for a month so it could heal from the inside out.

Why I joined the forum: I joined this forum while I was and am still in remission because I was looking to be able to help people. I didn't have a forum to go to when I was sick and I would have loved to talk to people who were in remission so here I am for all you guys. I also have many stories to share (good and bad) if anyone would like to hear any about anything listed above.

Edit: Going on year 15 for remission.
__________________
Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
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, 17 years and counting.

Last edited by Jennifer; 01-09-2013 at 11:15 PM.
06-22-2011, 08:45 AM   #2
Karissa
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Why I joined the forum: I joined this forum while I was and am still in remission because I was looking to be able to help people. I didn't have a forum to go to when I was sick and I would have loved to talk to people who were in remission so here I am for all you guys. I also have many stories to share (good and bad) if anyone would like to hear any about anything listed above.
That's why I joined too! Twelve years of remission is amazing! I can only hope that I have another ten years! Thanks for sharing your story- it is truly inspiring. Question- how often does your GI have your blood taken to check your levels for 6MP? I always worry that my GI doesn't check mine enough. I'm going for bloodwork this week, so it's on my mind. 6MP is my only medication right now too, and I haven't had any problems with it.

What kind of teacher do you want to be?

Thanks for sharing,
Karissa
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Diagnosed with Crohn's in June 2001, age 11
Severe Ileocecal disease

Surgery on November 6, 2009, age 19
Open ileocecectomy
Currently in remission

Meds tried: Pentasa, Prednisone, Cimzia, Flagyl, Asacol, countless natural remedies

Meds currently taking: 6MP

My reading blog, Addicted to Reading

Walking in Take Steps for Crohn's and Colitis in September, with my team Karissa and Laura's Fabulous Friends. Make a donation here, thank you!
06-22-2011, 10:50 AM   #3
Grant
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12 years of remission-well done you thats fantastic.
Rgds
Grant

1st symptoms 1983
Diagnosed 1985
1997 Right Hemicolectomy & Resection
2002 Laperotomy & Resection
2010 Laproscopic Ileocolic Resection

Been on Azathioprine & Pred

Currently on Entocort 3mg every other day
Humira 40mg every two weeks
Calcichew
Pentasa 4gm daily
3mthly B12 Jabs
06-22-2011, 11:49 AM   #4
Jennifer
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how often does your GI have your blood taken to check your levels for 6MP?

What kind of teacher do you want to be?
Once a month. If it doesn't get checked then my prescription doesn't get filled as it requires doctor authorization.

I got my Masters in Sculpture so I'd like to teach college level sculpture, ceramics or even drawing really.
06-22-2011, 01:26 PM   #5
Dayz
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Thank you Crabby for you story and thank you for participating in this forum as it truly does help us who are suffering. I wish you all the best on your endeavors as a teacher! I am sure you will be a great one: )
06-22-2011, 04:48 PM   #6
Crohn's Mom
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WOW ! 12 years ?!!?!!
THAT is impressive and gives me hope !
Thank you so much for sharing your story Crabby

~hugs~
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~T~
Mom to Gab (20)
DX: Crohn's 2/2010
and Austin (18)
DX: Crohn's 7/2013
06-23-2011, 12:32 PM   #7
Joleen23
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12 Years that brilliant , something for me to aim for
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Meds :

Methotrexate 20mg per week
Omeprazole 40mg per day
Ferrous sulphate 3 x tablet per day
Folic Acid 1 per day (5 days a week)
Ranitidine
(trammadol & Paraccetamol for painrelief

Diagnosed Nov 2010 - Crohns Colitis
(bowel problems since 16yrs) 29 Yrs old now
So far tried Asacol,Aza,6mp,Remicade
06-27-2011, 06:18 PM   #8
xJillx
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Wow! I didn't know you have been in such a long remission, especially being you are such an active member; most members have active Crohn's. This is such wonderful news.

I hope you have many, many more years of remission!
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Jill

Diagnosed with Crohn's Disease - July 2010
Diagnosis of Crohn's Disease Retracted - October 2011

I am still sick and so confused...
06-27-2011, 08:09 PM   #9
Keona
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this makes me happy and Hopeful.
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Dx GERD 2008
Dx Gastritis & hiatal hernia Feb 2010
Dx non-definitive Crohn's June 2010
Dx Endometriosis April 2011

"if nothing changes - nothing changes

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06-28-2011, 03:07 PM   #10
Charlotteee
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This has cheered me up, it gives me so much hope that remission can last so long and I hope it never stops!
06-28-2011, 03:20 PM   #11
MumofOli
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Wow, your story has brought such hope to us and others on this forum and we wish you many more years of remission.

Well done
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Mum to Oli - age 13

Dx Crohns March 2011

Infliximab Infusion every 8 weeks since July 2013
Asacol 400mg x 3
Maxepa (Omega 3) 1000mg - stopped Aug 2014
Omeprazole 10mg - stopped Nov 2011
15ml Galfer (iron) - stopped Sept 2011
Manuka 20+ honey
No more Pred
Cannot tolerate Azathriopine (Imuran)

06-28-2011, 04:03 PM   #12
SdN
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I hope I can get there someday I'm aiming for the 1 month mark right now but every day for the last 7 months I've had to keep starting over. The closest I've been to being in remission was from May of last year to around December of last year while on 50mg of Imuran and 1g of Pentasa. I would say 70-80% of my symptoms were gone then though I still felt pretty crappy during that time.
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Diagnosed with Crohn's September 2009

50mg Imuran - Jun 2010
increased to 150mg Imuran - Jan 2011
5mg/kg Remicade every 8 weeks - Mar 2011
stopped Imuran - Aug 2011
7.5mg/kg Remicade every 8 weeks - Nov 2011
Remicade is still working - Nov 2014
Colonoscopy shows no Crohn's! - Dec 2014

Current meds - 7.5mg/kg Remicade
07-06-2011, 01:20 AM   #13
Jennifer
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You guys will get there for sure! I just hope you all keep coming to the forum when you do cause there aren't enough people on here who are in remission.
08-11-2011, 04:49 PM   #14
Jennifer
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I'm no longer in remission unfortunately but I'm willing to answer any remission related questions as it was so long and very recent.
08-12-2011, 12:01 PM   #15
artheta
 
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Sorry to hear about that, especially after you'd been doing so well, but I guess that's the way it goes. Anything changed recently that you could attribute it to? I've been in remission for 5 years and had moments where I thought I was going to flare up, but so far I've been able to keep it in check without increasing meds.

Here's hoping you get this sorted quickly and have another 12+ years in remission...
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In remission pretty much since diagnosis (2006)

Previously on:
Prednisolone

Currently on:
4x500mg Pentasa

Supplements:
2x(500mg?) Calcichew
4x250ml Elemental 028 Extra
08-12-2011, 12:33 PM   #16
SdN
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I agree, I'm sorry to hear that your 12 year streak has come to an end However, it's quite awesome that you were able to go 12 years.

Artheta, congrats on your 5 year mark too! I've been mostly symptom free since July 1st of this year so I'm almost at 1 1/2 months Today is a bad day though but I'm hoping it's just a bad day in general and not another flareup.
08-12-2011, 03:29 PM   #17
xJillx
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I am so sorry about your recent flare.

Let's hope this one passes quickly, and you'll have another 12+ years of remission!
08-12-2011, 06:56 PM   #18
Jennifer
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Anything changed recently that you could attribute it to?
Extreme mental stress (grandpa had a massive stroke and I was one of his 24hr caretakers for 6 months and had to deal with my mom having a mental break down because of all the business that happened at my grandparent's house) and being taken off of Asacol last October. Other than that, nothing. My advice, if the options above come up, flee from your family and stay on those meds even if your doc thinks you could go off and be fine. Maybe I would have been fine, dunno. It could just be the nature of the beast and it may just be my time.
08-30-2011, 08:41 PM   #19
Jennifer
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WELL FALSE ALARM! :P

So went to the GI today and he does not think I'm in a flare. What he told me is that since I've already had a resection chances are I'm collecting a lot of bacteria in my gut at the resection site (due to pockets or abnormalities caused by the surgery) making it so I'm not digesting properly which is causing mucus and showing slight inflammation. Apparently my GP read my blood work wrong. He said my inflammation markers went from an 8 to 25 when really it went from an 8 to a 9.3. Really not that much of an increase over the course of a year.

He wants me to stay on Entocort and the 75mg of 6MP to see how I do (he said both can be used as maintenance drugs) and to start taking probiotics (Acidophilus) to increase the amount of good bacteria in my gut in hopes that they'll fight off the bad bacteria. It was either that or antibiotics but that'll kill the good bacteria too.

He said that this may become common since my resection and that it doesn't mean I'm in any type of flare. So good news really.

So still in remission for 12 years and counting baby!

Last edited by Jennifer; 08-31-2011 at 03:15 AM.
08-31-2011, 03:03 AM   #20
DustyKat
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Happy happy news Crabby!

Congratulations

May it keep on keeping on mate!


So happy for you...
Dusty. xxxxxxxx
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Mum of 2 kids with Crohn's.
08-31-2011, 04:23 AM   #21
Ian
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Yes! So pleased to hear it Crabby, you get to keep your sig! Hope the probiotics solve your mucus problem x
__________________
Dx Ulcerative Colitis Oct 2005 (age 19)
Dx Crohn's Colitis Feb 2010 (age 23)
Dx Indeterminate Colitis (IBD unclassified) Oct 2011 (age 25)
Dx likely Ulcerative Colitis July 2013 (age 27)

Currently taking:
6MP (75mg daily)
Asacol (3 x 800mg, twice daily)

Have taken: Humira, Infliximab (Remicade), Prednisolone, Predfoam
08-31-2011, 12:53 PM   #22
Grumbletum
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Yayyyyyyyyyyy. Excellent news.
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Dx Crohn's terminal ileum April 2011
Ileocaecal resection & partial cystectomy Sept 2012
3.5 years happy remission, in mild flare since Feb 2016 with related Portal Vein Thrombosis

Previous: Prednisolone, Mesren, Omeprazole, Infliximab, Azathioprine
Current: Pentasa, Librax, Warfarin
Helen x
08-31-2011, 02:31 PM   #23
xJillx
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Hooray!!!!
09-10-2011, 10:17 AM   #24
Pooh
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Tku so much for sharing your story. I am new today and am reading how people are getting along - I sorely need hope today. Question - I am going to my PCP in two days for a bronchial infection and blood work. What should I ask for and look for? I will have both my PCP and my GI review the results with me - plus one for my files. Tku so much again for sharing and I am so happy for you.
09-11-2011, 11:19 AM   #25
Paul Cronk
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Thanks for sharing this good news and I guess that is what the separate "success stories" thread is about too.

After three days on Prednisone I now remember what "normal" or close to it. We'll have to try to get that same feeling with sustainable meds but to have that long remission as a goal/hope/possibility for me is a big big help. I am so pleased for you and glad you have come in here to help those who are hurting.

Bless you.
02-23-2012, 01:41 AM   #26
Jennifer
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Just realized another year has passed. Now its 13 years and counting.


Sorry I missed your question Pooh. Was a rough few months recently and I wasn't on the forum as much. Hope you got everything sorted out.
02-23-2012, 04:17 AM   #27
DustyKat
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Hearty congratulations Crabby!!! Long may it continue!!!


Dusty. xxx
02-23-2012, 01:03 PM   #28
Angrybird
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Wahoo! That has certainly brightened up my day I hope it continues for many more years to come.
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Angrybird

DX: Crohns July 2002
Surgery: Ileocecal Resection Sept 2011
Now:Tummy behaving itself and new mummy to baby Nicholas
Current Meds: 6-MP 75mg,B12 injections every 3 months
Previous Meds: Budesonide, Prednisone, Remicade, Pentesa,Hydroxychlorequine,Azathioprine (tried twice) and Methotrexate
02-23-2012, 03:04 PM   #29
Crohn's Mom
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Lucky 13 !

So very happy for you Crabby ~ I hope it continues for many,many more years!
05-08-2012, 11:40 PM   #30
Mark in Seattle
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Crabby, if you happen to read this sometime, would you mind clarifying your month-long ordeal with post-op infection of your resection site & gauze-packing? Are you talking about an internal infection, inside your abdomen where your bowel was resected or do you mean your incision where they sewed your skin back together? I'm having a hard time envisioning what happened exactly? Did you have to be in the hospital for a month for that or not? Any idea why the infection occurred? Were you doing lots of prednisone at the time? My surgeon told me he would want me down to 10mg pred/day before he would be inclined to operate on me, due to the risk of infection when on pred.
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