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07-27-2017, 05:09 PM   #1
natsmill
 
Join Date: Jul 2017
My story

HI
I was diagnosed with crohns in 2000 now age 33 and I am in remission. I get Remicade every 8weeks and its the best i've ever felt. ive been on numerous medications Azathioprine, methotrexate, sulfasalazine and numerous others all with different side effects.
My problem now is memory loss and joint pain. I put it down to being on steroids for so long.For a short while I thought I either have the early onset of dementia or I am depressed, I'm now under the illusion I may be suffering from chronic fatigue syndrome. I don't want to go to the doctors for a diagnosis of this as I feel it will just put insurance up for holidays and what not, and there isn't much cures for this appart from cbt. my feelings are that most crohns patients will have chronic fatigue syndrome. My family don't really understand but I get the fact youd rather be with someone positive rather than negative, so don't tend to talk about my condition much. This is why ive decided to join the forum.
I take a varied diet as doctors tell you to avoid ruffage avoid fibre but my feelings are that this puts me at greater risk of bowel cancer and cancer in general . I have a healthy 5 year old I am married and have a large family 2 brothers and 2 sisters who are all healthy (thank goodness). I think its important to always be positive and stay strong. I work as a nurse which I have done for 12 years, I would quite like to go into gastroenterology field to help fellow sufferers of IBD
07-27-2017, 05:36 PM   #2
Scipio
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Location: San Diego

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Every case is unique in some ways, but it's usually necessary to avoid roughage and fiber in your diet only if you have a stricture and thus are in danger of a bowel blockage. If your gut has not yet been damaged enough to get quite narrowed, roughage and fiber are usually okay.
07-27-2017, 05:43 PM   #3
Sophabulous
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Location: Cheshire, United Kingdom

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I can definitely relate to the memory loss. At first my concentration suffered and I was really irritable but once my B12 and Iron was in normal range this improved.

Now I'm just forgetful and I hate it. I would be interested in other responses too, just to see if this is a 'thing'!
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Diagnosed severe Crohn's of the Duodenum, Terminal Ilium and Cecum.

Currently taking Azathioprine 100mg, Esomeprazole 40mg, B12 Injections and various supplements. Azathioprine failing so awaiting next steps
07-28-2017, 10:15 AM   #4
Scipio
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My memory is not as good as it once was, but I can't tell if it's due to Crohn's or just normal decline in memory due to aging.
07-28-2017, 11:13 AM   #5
ronroush7
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Welcome. I like your positive attitude and that you want to help others in the same situation.
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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
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