Ignored at a Support Group for Saying a Word!? (Nutrition)!

In the year following my daughter’s diagnosis of Crohns disease also called Inflammatory Bowel Disease (IBD), we had a surprising experience! As a mother of a child with a chronic illness the first thing I did was try to educate myself as much as possible. Twelve years ago, when my child was diagnosed with this debilitating illness, I searched the internet to learn all I could about IBD. The next thing I did was join IBD organizations to learn and show my support to find a cure!

My daughter, Jordyn was 12 years old at the time she was diagnosed. Her symptoms were chronic abdominal pain, diarrhea, bloating, gas attacks, vomiting, fevers, skin rashes, anemia, joint pain, and indolent sores in her mouth. She had lost 30 pounds in 6 months and had stopped growing resulting in a 2-year growth delay as well as a failure of normal teeth development.

At the beginning of treatment, she was prescribed steroids and chemotherapy medication that she willingly took for one year, despite the fact that she showed no improvement at all. Her condition worsened, and, to make matters worse, her hair began to fall out. She had missed 60 days of school and was [...] continue the story

Stubborn Head, Stubborn Bowel

Posted: 02 Jan 2013 10:36 AM PST

I don’t know about you but I really don’t like giving up. I have always been stubborn but ever since my Crohn’s diagnosis I think I have become even more stubborn. I think I lie more too, nothing grand just little white lies about how well I am. These lies are not to mislead others; they are aimed at misleading myself.

If I tell myself I am well enough to do something then most of the time I will do it. My stubbornness and self lies get me through most situations. I’m not one for being defeated, so if I have a task to do, I get on with it regardless. This is not always a good way to live. I think I am scared of falling down some kind of slippery slope of laziness, as if my independence is at stake.

If I can’t do one thing due to my illness, will I refuse to do another? Will it trigger a domino effect? As a sufferer of a chronic illness with no chance of a respite I have plenty of valid reasons why I should go easier on myself but I can’t. I will not [...] continue the story

Thinking of Losing Weight?

Back in 1980 my weight was about 250 lbs. Over the last 32 years I’ve suffered from a variety of illnesses and I now weigh anywhere from 150 to 155 lbs.

Bowel infarction – January 1980 Felt severe stomach ache. Called my GP who made a house call and diagnosed it as a virus. Told me to get rest, but after several hours and more pain every minute, he instructed me to go to Emerg and Dr. gave me pain killers, but they were ineffective. Sent me home. Still tons of severe pain so went back to hospital. This time was admitted. Had Surgeon take a look at me. Had my stomach pumped. Finally was able to have a BM..it was black. Showed Nurse..she flushed it and made no notes.  Surgeon said he would open me up to see what he could find, but was thinking perhaps it was a leaky appendix. Opened me up and found my large and small bowel were gangrenous. Had to remove 75% combined, but did not have to go into a bag. By the way, before the operation, I was over 250 lbs. previous to this problem, I complained on many occasions to my GP that I was having dizzy spells,and having times where I felt spaced out. [...] continue the story

I Have Crohn’s Disease

Mike says:

‘Since being diagnosed with Crohn’s Disease in 2007, I’ve pilgrimaged, like so many others, on that long road toward the Mecca of consistent bowel health. So far, I’ve found the way to be not-so-difficult. I’m fortunate. Good doctor, relatively mild case. Still, what a frustrating, inexplicable disease Crohn’s can be! Embarrassing, slapdash, specific in its unspecificity. And that the origins of Crohn’s remain a mystery (i.e. we know what it *is*, just not *why* it is), a mystery even as more and more people seem to be “coming down” with a case, can tend one toward paranoid conjecture. Is it the environment causing this? Modern practices in the processing, preservation and packaging of foodstuffs? A general national over-tendency toward neurotic sanitization (some germs are actually good for you, toughen you)?

Who can say? Doctors, I suppose.

I am not a doctor. I’m a 33-year-old man who would like not to have blood in his stool. To that end (pun!), this comic – a gloss on that initial diagnosis and the perplexing, discomfiting months leading up to it – was my way of wresting a smidge of control from a situation bigger and more powerful than me. Bigger and yet, perhaps poignantly, [...] continue the story

Michael Seres @11.38pm

Friday, 7 October 2011

Well we just got the call that a bowel has become available and we are now on route to oxford. It really is the most nerve racking thing you could ever wish to happen. My wife and I just didn’t know what to say to each other when the call came.

They have told me so far that my estimated surgery time is 7am as they have to retrieve the bowel. Also they cannot give the final go ahead until they see the bowel.

I will keep you posted as to what happens. Am currently on the m25 and I don’t really know what more to say. You wait for this to happen but when it does its so so scary.

Speak later its going to be a long night.

XX Michael Seres

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