kassie hahn - You asked about diet changes and meds that worked. When I was pregnant and undiagnosed, I had no idea what was happening to my body. I was so scared for my baby, since I was losing weight daily. I read lots of things on the internet, and listened to health food people. I decided to try gluten-free and dairy-free for awhile to see if that helped. I did complete dairy-free for a month. I was strict on myself - no butter, no cheese, etc no eating out where I thought anything might have any dairy. Did it help me? No not really, except for the fact I think I consumed less calories, therefore I had less BMs. I never had severe cramping, it was the urgent/frequent D that killed me. I ended up with so much anxiety about eating. I didn't want to eat, because of fears of what everything was doing to me. I know a lot of people here try different diets that eliminate entire groups of foods (SCD, Paleo, etc). I admire their ability to press on with these diets. I just couldn't. That was when I seriously thought it would be better to live without my colon than deprive myself of eating out from time to time or enjoy foods at someone's house / party. Determining what I could/couldn't eat was causing me so much stress all the time. So instead, I have a friend who is a bit of a positive thinker / spiritualist. She basically encouraged me to go with what "felt right" to me, to my body. During those times, that I felt like everyone was telling me what NOT to eat, I couldn't think clearly of what I COULD eat. I just felt discouraged. This was all a process -- not something easily resolved. And even still to this day, I have a few foods that make me think twice about eating. I have re-introduced things slowly.
I did find the book, "How to Cook for Crohn's and Colitis" helpful. Since it had actual recipes and seemed to help answer the question on what I COULD eat. In those early days of getting better, I definitely avoided raw vegetables, beef (of any kind), peels of veg/fruits, chunky nuts, corn, popcorn, etc. I tried to cook foods for myself and get my veggies in by pureeing them, and adding them to a sauce or a soup. I ate a lot of chicken, rice, fish, a cooked vegetables (zucchini, carrots, squash, potatoes, avocados, bananas, tomatoes, etc. I tried to think in terms of eating foods that were easily digestible. As I got better, I would introduce things slowly - remember to give myself the question on how *I* thought *my* body handled a certain food.
As for meds -- I was basically on prednisone on some dosage for probably 8 months. I can't remember. I was on a low dosage for multiple months. Fortunately, I never had much of the physical side affects, but I did have sleep problems. I tried 2 different mesalamines, before ending up with Lialda. My 3rd GI wanted me off Pred. completely and I took the max dosage Lialda only for awhile. That's when I was still going probably 8-10x per day and I still didn't find that to be a long term solution. That GI told me how well I was doing compared to lots of people and that 8-10x per day would likely be my new normal. I switched GIs to see if there was a different approach. My 4th GI convinced me that 8-10x was NOT acceptable and said that we should try Fecal Transplant. But I needed to go onto Imuran (Aza.) to be able to take the FT successfully. It really wasn't until going on Imuran (Aza.) that things really got under control. I really didn't want to be on an immunosuppresant the rest of my life, so I was really willing to try the Fecal Transplant. I was on the Aza. for probably 3 months total. I never really felt any side affects -- I had to go for the monthly blood tests at first. It was just the fact that I went from a perfectly healthy person to popping over 14 pills a day that I couldn't get past. I know there are lots of people on Imuran, and it has been around a long time. I just really wanted to be off it!! The FT gave me that option!!
about the diet again -- what I did when I was flaring is different than how I eat now. I had a major fear of red meat (beef) for months even after being in remission. It took me a lot of courage to want to try it again. Even now, I don't eat it much. I just don't miss it. I have eaten it probably 5 times since doing my FT last August. I still wouldn't choose to eat a HUGE salad for a meal, but I will eat a small side salad and raw fruits/vegetables. I have also learned that about some of the FODMAP foods and how some of them cause more gas than others. I keep all these things in mind, and try to go overboard on anything that will cause problems. But I don't deprive myself from tasting it or enjoying it every now and then!
Thank you so much for the response! I am going to look into Fecal bactiotherapy treatments asap! I have been on on the SCD diet but not really following it to a T when it comes to the stages. I have been eating the yogurt, making smoothies, eating eggs, drinking lots of water, I find the foods help to be easy on my stomach for now but don't really believe I have an issue with gluten or sugar in the long run...I think it's just a good guideline for now to keep my colon from getting mad at me haha. I know what you mean about
being terrified of foods...and cannot believe I of all people am. I do really just want to cry and eat a lot of cake sometimes haha. I have lost a lot of weight and am thinking I need to introduce potatoes or something into my diet because I started at 110 lbs and am now reaching below 100. Its scary to look in the mirror anymore. I will ask about
the FTs and hope they can help. When I had frequency alone I was not taking my disease seriously and still eating very bad and just paying the price all day...now that has sent me into something much worse and the pain is now my biggest issue.