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Ulcerative Colitis questions: Confused and frustrated
Digestive Health | Last Active: May 29 4:10pm | Replies (22)Comment receiving replies
Hi, so sorry to hear that you have UC! I too have severe UC and have been through every tier of medication from oral and anal mesalamine, oral and rectal foam, budesonide (Uceris), oral prednisone, and finally the biologic, Entyvio, which has kept me in remission for 5 months so far. I also follow a strict plant based diet and that seems to help too. I do understand your confusion, as I must have the C-reactive protein and calprotectin tests every few months for them to check the inflammation markers; however, they are not always accurate and my doctor (a brilliant GI doc that specializes in UC and Crohns) said the only way to truly know that the medication is working is to scope, so they can see and biopsy the colon. I have colonoscopies every 12-18 months because my UC became fulminant and I was in danger of losing my colon. I have only had UC for less than 3 years and I remember the horrors of 12-15 bloody stools per day, losing a half pound a day, being too weak to leave the house. It has been a nightmare living with this chronic condition. I was fortunate to find my current doctor who prescribed Entyvio because that biologic has a better safety profile than some of the others, and so far, so good for me... So, I would ask your doctor if a colonoscopy would confirm that you are in fact improving. I know we all HATE colonoscopies, but my understanding is that this test (with biopsies) is the only sure way for them to know because they check the mucosal lining. I wish you the very best of luck!!! I live in Central New Jersey. I don’t know where you live, and again, I wish you the best of luck and clinical remission. I truly understand your pain and your frustration. Please feel free to ask any questions that I might be able to answer or share my experiences. I have learned much from others that have UC. 🤞
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I also live in central NJ. Red Bank area. My drs are in NYC , looking for a dr closer to home for my UC. Could you share your dr’s name please?
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@dval, thank you for your post. Was the Entyvio the first biologic you tried? I would love to hear more about the time it took for you to feel like you were on the mend. Did things improve immediately or did you have swings back and forth? I don't yet understand the business about markers and what they actually measure. My understanding is the biologics dampen my body's response to inflammation, so I would think a natural consequence of taking the medication is the markers for inflammation would naturally be lower, but maybe that's not how it works. Do you have any resources you could point me to to help me understand that more? I live in Del Rio, Tx, and the GI team I've been working with is in San Antonio. The bloody stools have just been the worst thing and also sometimes a lack of control especially at night. I have tried anti-inflammatory diet choices, and I do notice a big improvement when I'm very strict about those choices. I found the diet recommendations of Dr. Ruscio helpful. It's very restrictive, and when I started the biologic I would say I incorporated more variety in my diet. I didn't go crazy--still no alcohol, coffee, vgluten etc., but I did try some brussel sprouts, beans, and a little dairy and it was not good! So I'm back to the very strict diet. I've considered not continuing with the humira, but the doctors feel strongly its working and I should keep going until the next colonoscopy. I've already had two over the past 6 months and you're correct in saying they are no fun! Thanks for any continued info you can share. It really does help to talk to others on this journey.