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New to Crohns

Hi guys,

I was diagnosed with Crohns (or at least theyre about 75% sure its Crohns) in November 2013. It was a bit of an ordeal and an unusual scenario....

I am 30 years old, 5 ft 11 in and usually weigh about 85-87kg. I have been going to the gym 5/7 days a week since I was 17-18 and run about 6kms a day, so I am/was in good physical shape (and was even training a month before my surgery). I am about 77kg now and have gone down from a 34" to 32" waist...

I had been having digestive problems ongoing for about 12 months (increased frequency of bowel movements and increased food intake), but attributed this to the food on the mine site I work at (fly in fly out of a capital city in Australia). I began bleeding internally around September 2013 and thought I had better get a colonoscopy when this happened.

The Gastroenterologist that performed the colonoscopy diagnosed me with a malignant 5cm tumour/bowel cancer near my ileocecal valve, almost creating a blockage. I was sent immediately for further tests (MRI, CET, at least 15 blood tests) all which returned no bowel cancer markers but positive for inflammation. A second colonoscopy with a colorectal surgeon confirmed the mass, but biopsies only confirmed inflammation. At this point they think its a slow growing cancer (carcinoid).

After a right hemicolectomy I am informed I dont have cancer, but they are still not 100% sure what it is but are leaning towards Crohns. A panel of gastroenterologists examines my case history, specimen (2 feet of my colon) and testing results. They are now 75% sure its Crohns, but were baffled at the unusual isolated presentation of it. They also tell me as far as they are concerned because it was isolated to one part of bowel my crohns is now gone (I dont believe this for a second).

I am now on Pentasa daily (2 grams).

After the surgery I am now acutely aware that certain foods and drinks now cause me irritation. My gut calmed down after the surgery and my digestive tract was functioning as a normal persons would. I then had one beer 6 weeks after my surgery and was inflammed and had gut irritation/frequent bowel movements for 2 weeks. Looks as though Gluten/yeast and things that are hard to digest are bad. The jury is still out on dairy - chocolate or ice cream seems to be ok. Just not chocolate or dairy with gluten in it (e.g. cookies & cream ice cream). I had a blood test for coeliac and this came back negative.

I have never had any food allergies so I am taking some getting used to not being able to eat anything I like or drinking any alcohol whatsoever (I used to enjoy the occasional binge bar hopping but this probably never helped the cause....).

On a personal note, I cannot believe how little is known about Crohns. Leading experts claim diet may not have anything to do with it? And there is so much contradictory literature on what works, probiotics, foods etc...
I believe diet has a major role in Crohns and nowhere near enough research is being done.

My fear is that sooner or later I'll need another resection.

Anyway thats my story. I would be lying if I said it hasnt been an emotional rollercoaster.
 

afidz

Super Moderator
Hello and welcome!
Although the blood test for Coeliac's disease can point doctors in the right direction, it has a history of being false negative or false positive. The only way to test for it I believe is through biopsies. I would definitely try to stay away from any gluten and see if that helps at all.
 
Welcome. Not everyone is the same. I had a resection almost four years ago. One of the doctors who serves in the same Practice as my doctor said that after a person has a resection, at some point, the disease usually comes back. I hope 2014 is a healthy year for you.

2
 

valleysangel92

Moderator
Staff member
Hello, welcome to the forum

What a scary ride you must of had! I'm sorry to hear you've joined us crohnies but very glad they were wrong about the cancer!

As mentioned above everyone is different. Some people are severely affected by diet, others can seemingly eat anything they like and won't get any negative effects. One way to keep an eye on what does and doesn't work for you is to keep a diary, write down everything you eat and your symptoms, if you get any pain, give it a score between 1 and 10 .

Also , you are correct in thinking that surgery isn't a cure to crohns, but it can and does put many people into remission, some people go for years without symptoms after a successful surgery.

I understand your frustration about how little is known, in medical terms, it is still a relatively new disease, it's only really been known about for 60-70 years and there are a lot of variables, because they can't be sure of what triggers the disease they are unable to create a medication that will work for every patient and therefor treatment does involve a lot of trial and error. While this is difficult to deal with at times, there are a number of available treatments which can put people into a sustained remission, it's just a case of finding what will work for you personally.

If you have any questions or worries, please feel free to share them with us, we all understand and we will do our best to help you.
 
Thanks for the welcome guys.

Trial and error with foods will continue and hope the Pentasa doesnt have any nasty side effects. Will continue to cut gluten out and begin low FODMAPS diet.
 
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