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03-01-2012, 03:47 AM   #1
rob101
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Remission

"wey hey" well I think I am in remission !(hope I am not tempting fate).

Here's the story so far, four years ago was diagnosed with Pan colitis after various scans and a colonoscopy . I was put on Pentasa which didn't really seem to do much , still getting pain and the big D . Then last year I was rushed into hospital with a perforated bowel and peritonitus, they operated to remove a meter of the effected terminal ileum, ileocecal valve appendix and some of the large bowel. After the op the diagnosis was changed to Crohns.

I was then put on an elemenal diet for 1 month then the lofflex diet, alongside this I was prescribed azathioprine, colestid and Iron tablets. Six months down the line and I have had another colonoscopy and the GI said that my bowel is in "pristine " condition , which is great news . Although still feeling tired most of the time .

Just though I would share my good news with you, as when I was feeling down it helped me to come on here and read about people's success's against this horrible disease.
03-01-2012, 03:59 AM   #2
ormsklad
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great news
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DX Small Bowel June 2011

Meds:

Budesonise June 2011 - Sep 11
Aza Sep 2011- Nov 11
6MP Nov 11- Nov 11
Pred Nov 11 on going
MTX Jan 12 ongoing
Folic Acid 5mg Jan 12
B12 Vit Tabs
03-01-2012, 04:00 AM   #3
Grumbletum
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Fantastic news, long may it last. Out of curiosity, do you have to stay on any of the meds to maintain the remission?
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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
03-01-2012, 05:01 AM   #4
rob101
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Hi Grumbletum, yeah i am still on aza 150mg and colestid x2 sachets a day.
03-01-2012, 05:44 AM   #5
DustyKat
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Fab news Rob!

Just about the tiredness, are you being supplemented with B12?

Dusty. xxx
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03-01-2012, 01:24 PM   #6
Angrybird
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That's wonderful news! I am so pleased for you Like Dusty I am also wondering about your B12 with regards to your fatigue......
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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
03-01-2012, 06:16 PM   #7
lizzy16
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That's great news and really inspiring to hear, thanks for posting it gives us all hope!!!
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150mg Imuran
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Vit D Supplement


"There's nothing you can do that can't be done."
03-04-2012, 07:18 AM   #8
rob101
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Hi Dusty and Angry bird, I had my b12 checked in december and it was 232ng/l and normal is 211-911 ( huge range) so it is getting on the low side but still within normal range. Although my ferritin is low at 12.3 normal range 22-322 and never seems to go up even when on iron . What levels did you drop to Angry bird before you were given b12 ?
03-04-2012, 07:37 AM   #9
Angrybird
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I did not actually get told the level, just that I was low and needed the jabs (perhaps I shold have asked for the numbers ). From what I have read here I would say perhaps your B12 level does still needed to be 'treated' as you are not even close to the middle of the normal range (in fact you are very nearly low) and have got problems with fatigue............
03-08-2012, 04:22 PM   #10
Jer's Girl
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Congratulations, and thanks for sharing your success with us!
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-Nicole
03-22-2012, 06:28 AM   #11
crunch
 
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Rob,

can I ask, do you know if your crohns was in the small or large intestine or colon...

I am also having some success with LOFFLEX, but my consultant wants to put me on infliximab/remicade as he says diet can't help colon crohns...

congrats
03-22-2012, 06:42 AM   #12
Steph1989
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Fantastic news! Hope you stay that way for a long time
03-22-2012, 06:52 AM   #13
rob101
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Hi Crunch , great to hear that you are having some success with the lofflex, stick with it its worth the effort !. How far are you ,on the reintroduction of foods?

My Crohn's was/is in the terminal ileum which was removed last July.

Thanks steph I hope so too!
03-22-2012, 08:39 AM   #14
kappi
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Hi Rob, This is wonderful news ! Thanks for sharing.

I am currenlty on elemental liquid diet with re section surgery in a few weeks (illieum). I am not familiar with "LOFFLEX". Michele

Last edited by kappi; 03-22-2012 at 08:45 AM. Reason: adding on
03-22-2012, 01:12 PM   #15
crunch
 
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have been on LOFFLEX, self prescribed, since last autumn (fall) and I think its working for me, if I have something wrong it reacts, and some tried foods cause issue, but doc says diet can't help crohns in the colon as food is absorbed further up and if they don't treat it I'll end up and need surgery and I want to avoid that... but if I can see an impact of the diet then surely its working...

oh for a crystal ball!
03-22-2012, 02:06 PM   #16
CLynn
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Hi Grumbletum, yeah i am still on aza 150mg and colestid x2 sachets a day.
That's great new, Rob! How are you liking the colestid? My new GI has prescribed it for me, instead of Imodium. He says it works better on the "D" than Imodium. Mine will be pills.
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Cheryl
Diagnosed:1988
Previous meds: Sulfadiazine, Flagyl, Prednisone, Imuran, Pentasa, Asacol
Surgeries: re-section 2004
Currently taking: B-12 injections every 2 weeks, multi vitamin/mineral, fish oil (1000 mg), D3 (5000 mg)

Also lucky enough to have psoriasis as well.
03-22-2012, 04:12 PM   #17
KWalker
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Awesome news!
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Diagnosed:
Age 2 (1992)

Previous Meds:
Prednisone
Remicade
Humira
Methotrexate (oral)
Methotrexate (injections)
Cipro
Flagyl

Current Treatment:
200mg Simponi, Psyllium
04-05-2012, 08:48 AM   #18
rob101
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Hi CLynn, the Colestid is great and worked more or less straight away but just be carefull about taking it with other medicines as they should be taken 1 hour before or 4 hours after the Colestid.

Crunch ,good luck with the lofflex diet.
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