Crohn's Disease Forum » Your Story » 13 free years - it had to end?


04-02-2012, 11:34 AM   #1
Robert747
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13 free years - it had to end?

Hello,

Having spent a few days reading through the Forum I wanted to join to say thank you for the vast amount of information and for putting my mind at rest over many issues. I hope I will be able to contribute positively in the future to help others.

I am 53 and was diagnosed with Crohn's in my mid 30's. A couple of bowel operations and some uncomfortable years but since the age of 40 absolutely nothing - until two weeks ago with a major flare-up leading to a sepsis and ten days in hospital.

On a six week liquid (Fresubin) diet and about to start Azathioprine - feeling pretty good but tired and keen to for a days work in London on Wednesday on the basis getting back to normal will be a good tonic.

Thanks for reading and all the best.

Rob
04-02-2012, 12:07 PM   #2
CLynn
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Have to love those years of freedom from it....I didn't have 13, but got 7 after my resection. My taste of freedom ended this fall, alas.
Welcome and good to have you here!
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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.
04-02-2012, 12:48 PM   #3
mikeyarmo
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Welcome to the forum Rob!

I am glad you have already benefited from some of our member's experiences and knowledge. The people who are part of this community are truly special .

I am sorry to hear about your flare but am glad that a treatment plan has been set out for you and you are now feeling good. I know it can be hard to adjust to a liquid diet, especially if there is a drop in caloric intake. Make sure you are drinking enough Fresubin each day and hopefully your body will soon get used to this way of diet so that your energy can return.

Looking forward to seeing you around the forum more often going forward!
04-02-2012, 01:11 PM   #4
Robert747
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Many thanks.

Quick question - I am two weeks in (four or six to go) with Fresubin - the prescription is eight a day but for the first time I am starting to feel really hungry - is there any general advice. I can do it of course!!! Hmmm
04-02-2012, 02:28 PM   #5
Angrybird
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Hello there, are you under the care of a dietician for the Fresubin? It could be that your intake may need to be increased, are you maintaining your weight on this or is it starting to go down? One thing I was told to have when I left the hospital after my op was jelly babies, not sure if these are allowed but they may help with the feelng of hunger?

I have also recently re-started Azathioprine and so far so good so fingers crossed it will do the job for you as well.

AB
xx

NB Welcome to the forum!
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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
04-02-2012, 02:36 PM   #6
Tesscorm
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Sorry to hear that your Crohns has flared again. I hope you are able to quickly get things under control!!

My son did six weeks of enteral nutrition but his was overnight through an NG tube. He was allowed clear fluids so, at lunch and dinner, he was able to have broth, jello, freezies. Not much but, at least ,the perception of a meal. As his 'feed' finished at approximately 7am and didn't begin again until 9pm, he also found that the distraction of having plans/activities in the early evening helped take his mind off hunger.

He has continued the EN as a maintenance treatment, at a lower dosage (and with all foods now added back!!) but, with no other meds other than an antacid, it has, so far, kept him in remission since May '11.

As my son was diagnosed only last year, I'm always wondering what the future will hold. If you don't mind my asking, were you on maintenance treatments for the 13 years of remission... just curious as you didn't mention any medications???

Good luck, I hope your time on the liquid diet passes quickly and brings you to remission!!
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Tess, mom to S
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
04-02-2012, 08:55 PM   #7
David
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Hi Robert and welcome to the forum! I'm sorry to hear your streak has finally come to an end But here's to you starting a new streak that lasts even longer!

We're here for you anytime you need us and I do indeed hope you become a regular contributor here. If you were able to last 13 years then you no doubt have some wisdom to share

See you around.
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04-03-2012, 01:20 AM   #8
Robert747
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Tess - one thing that has become clear is that I will never complain about this illness, when I think about how children and young people tackle everything that is thrown at them and adapt superbly.
04-03-2012, 01:30 AM   #9
Robert747
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David - Thank you. At the time I had read seven years was about the maximum time you could expect without flare-ups. So thirteen years was clearly a bonus (although I have always had frequency / urgency issues). I had no medication for the past 10 years so I guess this was not exactly sensible. Was there a secret to thirteen free years? Possibly not, but I do train to a very intense level in the gym and have taken fresh carrot juice for years - but who knows what works!
04-03-2012, 07:46 AM   #10
Tesscorm
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Thanks Robert, it is amazing what these kids take on, especially the little ones!

One thing I forgot to mention... the hunger is a GOOD thing! Our dietitien warned my son that as the healing progressed, his hunger would increase. A frustrating situation!

Also, just for 'comparison' with what you have been given, my son was given 3000 calories per day; at the time, he was 5'10" and approx. 140 lbs (actually went down to 127 before diagnosis and, after 3 months of treatment, was up to 160 lbs).

Good luck
04-03-2012, 09:31 AM   #11
David
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Hi Robert,

Actually, I wrote a little something on carrot juice if you want to add your anecdote:

http://www.crohnsforum.com/showthread.php?t=27196

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