Chrohns patient 48 years young

I have had ileitis aso chrohns disease since I was 21 years young. Now I am 68 years young. Last year I had my first resection and am having active chrohns with ulceration now . I was six months in remission after operation. Now I bloat amd don't understand why doctors just look at me I guess I should write the book on,chrohns. For a while starting at 60 I was on steroids. had no idea how bad they are for you. I was on amd off for a few years til after the operation in May 2011. Never again will I take steroids even though at the time I had no idea how bad the side effects would ultimately me for me. Skin thin bruise easily had,cataracts. I am now active but no back doctors recommended remicade. Afraid to take what can I do. I need help. Also broke my arm in Jan 2012 and suffer from bad back problems. Help!








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Crohn's patient 68 years young
by: Lydia D.

Dear Crohn's patient 68 years young,

If it is any consolation, my doctors just look at me too and I am 52. I have had to do most of the work and experimenting myself. I think that they are just not in their comfort zone with us because we generally develop something new after they have tried their best to help us.

I suggest that you go onto a low-residue liquid/homogenised diet for a week or so and see if that helps with your bloating. It is likely that the anastomosis site has constricted to form a stricture. This requires you to chew very well and to modify your diet. Avoid wind-producing and high-fibre foods http://www.ostomyland.com/ostomyland/chapter-10-problems-with-diet/

Ideally you should talk to a nutritionist because you could end up malnourished. If you have lost your terminal ileum, you will need to be injected with vitamin B12 every 10-13 weeks, and with vitamins A, D, E, and K, every month.

Stick to low-fibre fruit and vegetables (without skin and pips), such as broccoli, carrots, pumpkin, parsnips, cauliflower, apples, pears, etc.(Google).

When you are on steroids, you should always take calcium and vitamin D, which is protective against osteoporosis. Your recent broken arm indicates that you should have a bone scan to determine at what stage (if any) your osteoporosis, due to long-term steroid therapy, is at.

Have a look at the clinical guidelines in your country and discuss next steps with your doctors, e.g. http://www.nature.com/ajg/journal/v104/n2/full/ajg2008168a.html

In the interim, keep a patient food/mood/symptoms/medication diary. This will help you better monitor your health and help you to communicate with your doctors. And, prepare thoroughly for your next doctor's appointment (Google).

Use the following to complete your diary:
Learn how to communicate with your doctors
http://ibdcrohns.about.com/od/diagnostictesting/a/15minutes.htm

Patient diary
Keep a patient food/mood/symptom/medication/supplement diary. I refer you to the following:
http://beyondibd.com/blog/treatment/how-keeping-a-diary-can-improve-your-health/

CDAI Crohn's daily activity index
http://www.ibdjohn.com/cdai/

Bristol Stool Scale
http://en.wikipedia.org/wiki/Bristol_Stool_Scale

The comparative pain scale (no pain 0, 10 excrutiating pain)
http://www.tipna.org/info/documents/ComparativePainScale.htm

Learning to spell your disease would be a valuable first step ;-)

All the best,

Lydia D.


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