Newly Diagnosed With Crohns

by Debbie

I was just newly diagnosed with the disease but the doctors feel I have had it for 10-15 years due to my symptoms. I have 20 cm of thickening with a part of the intestine that is very thickened that when I had my colonoscopy they could not pass through this area. Can anyone tell me how long I can go without needing surgery when I am at this point in the disease.


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Newly Diagnosed With Crohns
by: Lydia D.

I was in a similar state when they diagnosed me. Like yourself it was clear that I had had the disease for a couple of decades prior to diagnosis.

It is difficult to say when you will need surgery. I think that you will know when it is time. At the end I was begging for surgery. If you can still eat and function then surgery is unlikely to be necessary. However, the risk of such as abdominal abscesses, fistulas, peritonitis due to intestinal performation, ileus (total closure of intestinal lumen), intestinal cancer on long-term Crohn's inflammation developing is high.

Consultation with a nutritionist might help you in the interim. There is some good nutritional advice here, which should help you avoid increased pain, etc., due to blockages.

Firstly, in my layperson's opinion, you need to ensure that your disease is under control and for this you need to have a good team of doctors. This could take some time to find unless you have been exceptionally lucky. Secondly, you need to get a second opinion if someone suggests that surgery is the only way ahead. There are a lot more options available nowadays and you should explore these first.

I would like to add that planned surgery is lower risk and has a greater chance of success than emergency surgery. However, as you know, surgery is not a cure for Crohn's.

I had hoped that all my troubles were gone after I had had the panproctocolectomy, but the Crohn's continued. After multiple ileal resections I now have short bowel syndrome (aka intestinal failure aka malabsorption syndrome). This is also no fun and I am teetering on the edge of needing to be parenterally fed and need regular vitamin infusions and injections.

Lydia D.

Colon thickening...
by: Peter Bray

Get the advice of a good gastroenterologist as thickening of the colon wall or stricture will cause difficulty in passing stool material. Become your own researcher, study everything you can on the Internet, look up "crohns strictures" and make sure your gastro is bright and communicative and referred well by others, it's your health and your colon, not his or hers---

Peter Bray, Benicia, CA

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