Hello all. I am i have been diagnosed with Ulcerative Colitis x 22 years, as I was just 15 years when initially diagnosed with inflammatory bowel disease. The past 7 years my disease has remained very active. I have been on several doses of prednisone and biologics.
Some more background about Rachel:
I have three kids 8,9, 12, and married, which my husband is supportive, but I cannot help but feel bad as I am so fatigued from the constant flare ups. I am a former critical care RN, now blessed to be working from home, as my disease progressed so I cannot work in the hospital, work 12 hour shifts.
I am currently having 20 plus bowel moments daily, liquid, pain and nausea. I feel so tired I cannot get up. I feel like a prisoner in my house…I can’t leave, grocery shop, etc. I have tried Humira ( sent me into the hospital for a week due to a reaction), Imuran ( reaction), remicade(reaction), just had my 5th dose of entyvio. The entyvio I reacted to as well, severe joint pain, 40 lbs of water weight. I am also Lialda, cortifoam, mesalimine enemas, and not Lasix (diuretic ) and potassium were added.
I take probiotics, cinamon, fish oil, calcium and vitamin D,Bentyl, digestive enzymes and phenergan. I also take Lialda, dexilant, Zantac, topi max, relpax for headaches, Lasix and potassium. My doctor now wants me to see a cardiologist for the swelling and rule out heart issues than start Simponi, another biologic. I am very Leary of anymore of these medications as I have reacted so poorly. Gi says the other alternative is to have my colon removed. I want to see if there is anyone else out there who has reacted with biologics the same way I have, or if anyone out there decided to have their colon out. I want my quality of life back. I want to feel like a good mom to my children and a good wife to my husband. I want to just be able to leave the house when I want, not as my stomach permits. UC has changed my life as I cannot work outside the home, my kids see me “sick” a lot, my husband is forced to take on more and that m akes me feel bad. I am so tired of colonoscopies too. But it needs to be done. My main concern with the next step now, if I am clear for yet another biologic, I don’t think I want to go through it. On the other hand, I don’t want to have my colon out. I have tried diet changes before and nothing really helped. I am hoping there is someone else like me who found something that worked. I appreciate anyone reading this. I know it could be worse, but this disease has taken a lot away from me…I know I am not the only one who is going though tough times with this tough disease. Thank you for your thoughts.
I have tried gluten free, paleo, scd diet. I get so sick with veggies and fruits, and I do want to eat healthier. The biologics scare me.
written by Rachel
submitted in the colitis venting area