My daughter is not yet 20 and needed a bowel resection and abscess removal (2 of them) only 9 months after her first symptom. Everything moved very quickly. So, now she is "disease free", but fully know that there is a 50% recurrence rate. Obviously, her doctor, whom we respect and trust, has an opinion, but just want some other thoughts. Doing nothing seems so scary because her disease went out of control so quickly. A biologic is NOT one of our favorite things to do and seems overkill when she currently has no active disease. That seems to leave a 5ASA or dietary change. Looking at long term effects of 5ASAs, that is worrisome too given her age. She had started SCD right before things went south so it wouldn't take much to go back to that. What have other people done and did it work . . . . i.e. as of now are you without further disease recurrence? Is there another option we are missing?
Reply posted for knaussdd.
I underwent somewhat extensive bowel resection about 17 years ago where most of my ileum was removed due to ruptured abscesses. Despite that and ongoing symptoms I was not diagnosed with or treated for Crohn's until nearly 12 years later following a near fatal GI bleed.
If I don't take a bile or cholesterol binding agent I suffer greatly from chronic diarrhea despite long term treatment with Methotrexate and Cimzia and eating a heatlhy low-fat diet.
Your daughter may find that she feels alright without treatment but if she does suffer symptoms it might be worth exploring dietary changes and at least something like Cholestipol to see if it helps. Do tell her to avoid aspirin and most other NSAIDS (motrin, alleve, etc) as they can exacerbate symptoms and cause a bleed.
Reply posted for knaussdd.
I had a small bowel resection many years ago for crohns. Some thoughts: I've led a very normal life with no recurrence and no meds. Before the surgery, I was miserable for about a year. I believe diet plays a very important role in recovery and for the rest of your life. Also learn to manage stress. No such thing as eliminating stress, but you can learn to manage it. A summary of my diet: I eliminated junk food as much as possible. I eat whole grains, lots of vegetables and fresh fruits, wild fish, miso soup, grass fed beef, lamb and buffalo, pastured chicken and pastured eggs. Try to eliminate white sugar, white flour and packaged food. I shop at farmers markets, small farms, and local health food stores for fresh, organic food. I stopped all dairy after my surgery ( milk, cream, butter, yogurt etc.) Although I didn't stop gluten foods, it might be a good idea to experiment by going on a gluten free diet to see how your body reacts. I also recommend either stopping or cutting way back on coffee and definitely stop smoking if you haven't already. We're all different and react uniquely. When I go out to eat, I choose restaurants that I can choose healthy foods. That can be many good quality places, but no fast food. And I do eat white pasta and sourdough bread as a luxury when out, but at home I eat brown rice pasta and whole grain bread. This is my diet and its worked for me. Its a healthy way to eat whether you have disease or not. You must choose what works for you. Since I had the end part of my small intestine resected, I need to have B-12 shots regularly. Also watch your vitamin D levels. And lastly you might find it helpful to take probiotics daily and a digestive enzyme with your food. Hope some of the above will be of help.
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