I’m Joanna and was diagnosed with Ulcerative Colitis at 17 after having some bleeding and being constipated for years. I’m 23 now and feel like I’ve tried everything. I’ve had 8 colonoscopies and my last three showed pancolitis. I’ve always been a natural type of person, never taking medicine unless absolutely necessary- that is until UC happened.
Some more about me:
I am from Pittsburgh, Pa and enjoy reading, watching movies/TV, hanging with my family, and working out. I am very outgoing and fun when I’m not feeling so crappy.
5-8 loose BMs a day, urgent, bleeding, cramping
All my life, I had constipation problems. In my teen years, they got worse and I probably tried every laxative there is. I ended up seeing some blood in the toilet when I was 16 and ended up going for a colonoscopy. Doctor told me I had proctitis, to take Rowasa, and eat more fiber. Well, I was eating more fiber than humanly possible so I knew that wasn’t a problem. I tried the Rowasa and the bleeding remained. I ended up looking online for natural detox diets and found a vegetarian diet. I followed it for a week and my bleeding was gone. I decided to stay a vegetarian after that. For years, I was totally fine and hadn’t seen a GI.
It was when I decided to try raw fruitarianism that things went south. I was 21 and was following the 80/10/10 diet when my bleeding and constipation started again. I was shocked because I heard it was a really healthy diet. Well, I ended up seeing a new GI and he started me on enemas again and Lialda. I reacted very badly and developed a ton of symptoms- diarrhea, urgency, cramping, hives, burning skin. My doc said it couldn’t possibly be the meds because they couldn’t make things worse but I disagreed. I decided to try natural methods all that summer- different supplements from naturopaths and the IBD diet by Jini Patel. I ended up in the hospital from these weird herbs I got from one naturopath and from being so dehydrated. That week, I started on a ton of meds- prednisone, canasa, cipro, flagyl, 6mp, remicade, zofran, prilosec. I had no idea what to think because the doctor said I had to be on all of them to get better.
I stayed on them and by January this year, I was flaring again. The remicade stopped working and the 6mp caused really high liver enzymes. After that, I experimented with everything- fecal transplants, LDN, Vit E enemas, VSL, Renew Life probiotics, slippery elm, marshmallow root, turmeric, l-glutamine, astaxanthin, l-carnitine, NAG, kefir, Vit D, fish oil, activated charcoal, colostrum, iron, Vit C, SCD, Paleo, B-12 shots.
I am at my wit’s end with being sick and am starting Humira. I am hoping it works because all of the studies going on in my town are for Crohn’s- good ones like stem cell transplants and worm therapy. I would’ve tried them before Humira but UC isn’t as popular with research unfortunately.
My mom and sister are very supportive and help me with everything. My dad has UC but has been in remission for 24 years, med free, so he thinks I am making it up or causing it myself. He is very un-supportive so we don’t talk. I just want to be myself again and have a job and do things with my friends. I hate sitting at home all the time missing out on life. I have a degree in health and physical activity and was teaching yoga, nutrition for kids, and various other fitness classes before my flare got really bad. If it comes down to it, I will have my colon out and live with a bag because I just don’t wanna live like this.
Currently: b-12 shots 1000mcg, vit d 4000-10,000 iu, coconut kefir, bovine colostrum, astaxanthin-12 mg, spatone iron, vit C, cod liver oil
Tried- rowasa, prednisone, endocort, hydrocortisone enemas, sulfa enemas, 6mp, remicade, zofran, prilosec, LDN, cipro, flagyl
written by Joanna
submitted in the colitis venting area