WARNING: Please do not read if you are sensitive to such issues. Also, it is likely that inappropriate language will be used.
When I was in high school, I was 5’7″ and weighed just a little over 100 lbs. I did not have an eating disorder but I refused to eat dairy and red meat because it made me feel so ill. Well, I may have been able to be diagnosed because I was underweight and did restrict dairy and red meats. I also avoided many junk foods because they just taste bad. So maybe I did have a disorder of sorts but I believe it was more Crohn’s related–I just wasn’t aware I had Crohn’s yet. When I was 20 years old, I weighed 134 lbs the day I gave birth to a happy and healthy 7 lb. baby girl. Two days later, my arrival at home was in my pre-pregnant jeans and t-shirt. My weight had returned to the 115-120 lb. range. 18 months later, I was delivering another child and weighed 131. This time I had a happy and healthy little boy. I was never told I needed to gain anymore weight through my pregnancies. I continued to be active and walked/ran and hiked throughout both of my pregnancies.
Eventually, my weight gradually increased to the 130-135 lb. range and I was happy with this. I looked healthy and had plenty of energy. This is my favorite weight range. In 2010, I had a hysterectomy that included both ovaries. My weight increased to 150. I was not happy with this so I increased my daily walk from 2.5-3 miles to 5-6 miles. Cutting unhealthy fats isn’t really an option because I do not eat them and really have never eaten them. Potato chips and snack cakes taste like vegetable oil to me so I do not really have much interest in them. I do not eat dairy so no ice cream for me! I even had my thyroid testing but everything was normal. I was given advice to eat no more than 1,200 calories. I did not follow this advice. I just maintained a 300-500 calorie deficit daily but did not lose any weight. I did not gain any either so I just accepted this as my new weight.
When I went to the hospital in January of 2016, I weighed about 150. I am now up to 165. When I say this to friends it sounds like “one hundred and sixty-fucking-five” because I still can’t believe I weigh this much. Most people with Crohn’s are worried about weight loss and how to maintain or gain some weight. I have gained and gained! I am so frustrated with it. I do not eat enough foods to support this weight increase. I am taking Colestipol, Lomotil and Entyvio. I have continued to gain and have been on Methotrexate, Humira and now Entyvio. The only medications that have not changed are the Colestipol and Lomotil. I am at a loss. I have no idea and the doctors do not seem to be concerned with this at all. Even when I mention that I am eating around 500-1200 calories daily, the doctors (both GI specialist and primary care) just continue–business as usual.
It has gotten so serious that I step on a scale each morning. If I am more than 165, I will not eat or drink anything but water that day. I eat one meal per day and it is usually a banana, rice milk and peanut butter smoothie. Sometimes I will have this and a light dinner (baked chicken, sweet potato). On the weekends, I add black coffee. I take a daily multi-vitamin. I guess I am quite worried with the direction my weight is headed and the lack of concern the doctors have. If I can’t get this under control things will be bad. I realize the potential for a complete shit storm but I also refuse to gain anymore weight. I have tried healthy ways to maintain/lose and have given in to new weight goals several times but now I am unreasonable. I used to be happy with 150 and now I have to remind myself that 135 is not going to happen. Part of me believes that it can and maybe then I wouldn’t have so many Crohn’s symptoms. The logic! If I’ve had Crohn’s my entire life, it only bothered me once I accepted having some fluffy. For now, I will continue to remind myself that these ideas are like buckets of soot and poo.