First my colon, now my rectum....now what?

Hi everyone,

I'm 22 years old and a year ago had never even heard of Crohn's Disease or ostomies. Since June '13 I was diagnosed with what I now know to be an extremely severe case of Crohn's, so much so that every treatment and medication I've tried has failed to take any significant effect. In August '13 I was forced to have my entire colon removed, leaving me with an ileostomy that I was told would be permanent. Within a few months I regained my old weight and fitness and was back at school balancing this new lifestyle with college life. Things were fine until around March '14 when my rectum and the stump of my colon still inside of me began to flare up and become inflamed. Within a month my rectum perforated and I had several abscesses that needed to be drained. Rather than risk this ordeal reoccurring again in the near future I decided to go ahead with a proctocolectomy and had both my rectum and the stump removed. The surgery itself went well but unfortunately another, much larger abscess formed in the place of my old rectum within a few days and I was back in the hospital for a week with a new drain put in and a 3 week regiment of strong antibiotics (which I am now taking at home with a PIC line). By next week my PIC line and the drain should both be removed and I should be well enough into my recovery to start getting back to my normal self and life.

Here is the struggle I am now facing. I have absolutely no idea how to prevent my Crohn's from flaring up elsewhere in the future. It's all very confusing to me because I never actually had to live with the burden of the disease like most do for years. My onset was so severe and rapid that I was forced into two different surgeries almost immediately after any symptoms occurred. I don't know what sort of dietary regiment I should follow or not because there are so many of them and every individual reacts differently to things. So now I am turning to you, my fellow ostomates and crohnies, for some advice on how I should move forward in terms of my diet. Should I try something drastic like the SCD (specific carbohydrate diet), or should I just never eat raw vegetables/nuts/sugar/dairy and all the foods I love ever again? Or maybe I should just keep eating a normal diet free of fast food, soda and too much processed or preserved foods. I really don't know where to draw the line and how to go about it all. Any and all advice is greatly appreciated!

P.S From your likes raw vegetables/nuts/sugar/dairy. Raw veg should be okay, but must be peeled! Also chew to avoid big chunks on exit (trust someone who knows!). Nuts are fine, but chew, chew and chew again. Even then it's like trying to push grit down the bag! Sugar in moderate amounts i.e in tea/coffee, on cereal, sprinkle on grapefruit is no real problem. Dairy I don't have a problem with; Milk, Cream, Ice Cream, Yoghurt, Cheese (Cheese is a good braking system for transit time. I should however mention, that Heavy Cream (what we in the UK call Double Cream) can have an adverse effect. This also goes for Custard, which I used to love, not sure if our American friends call it that, they may know it as Creme Anglaise.

It sounds like you are wondering if any food you eat can cause you to flare.   I could be wrong, but I don't think a flare is caused by what we eat.   I believe foods are mainly a concern for potential blockages, gas, output consistency, etc.

I have Crohn's Colitis, which means my Crohn's was confined to my colon, & rectum.   My small intestine and ileum were never involved with disease.

My proctocolectomy with permanent ileostomy was in July 2011, coming up on 3 years.   I have had no further involvement once my colon, rectum and anus were removed.

I found this statistic on my own, but my surgeon and GI as well as some others on this board with Crohn's Colitis have confirmed it.   If Crohn's was never present in the small intestine, the removal of the colon, rectum and anus will give around an 80% chance of a non-recurrence.    I cling to that 80%, but am ever mindful that Crohn's is not curable and it can return.    If yours was only in your colon, this might ease your mind a bit.  If it was also in your small intestine, I would imagine your doctors would be suggesting some kind of maintenence drug.

My GI told me to be very "judicial" with the use of NSAIDs, like Aspriin, Ibuprofen, Naproxin Sodium, etc.   She said 10% of Crohn's patients have recurrences due to the use of NSAIDs.

Good luck and this is the place to be for any questions/concerns you have

So sorry to hear about all of your struggles! Hopefully you are finally on track to getting healthy and back to your "normal" life. I have Ulcerative Colitis, and also have had a proctocolectomy with end ileostomy. I don't think you should worry TOO much about the mouth ulcers indicating your disease might show up in your small intestine. Both Crohns and Ulcerative Colitis can have extraintestinal manifestations, meaning that issues can arise in many different parts of the body due to the disease. This can mean joint problems, eye problems, mouth ulcers, and a few other conditions. Ulcerative Colitis never manifests in the small intestine, and I would also have BAD mouth ulcers when flaring and still get them quite often. Good luck on getting and staying healthy!

Amalory - Sorry to hear about your situation and having to deal with so much in such a short time......

I am no Dr., so my opinion is about the same or even less than the next guy.

UC usually manifests itself outside the colon - throat ulcers (had them), red eyes (had them), and other areas as mentioned.

Chron's usually stays in the colon and/or small intestines.

Since i've had surgery (complete colon removal), I've had no throat ulcers, no pain in joints, etc. I have some eye issues, which i kind of blame on prednisone, but that's another story.

I would say you are more likely to have UC than Chron's...and, if they did remove what was left of your colon (rectum), you should not have anymore of these "side symptoms" as I call them.

Also, have you been tested for other autoimmune diseases? There is a list an arm's length long - you should consider seeing a specialist in auto-immune diseases and have them test you for everything...

Hang tough!