Ulcerative Colitis Questions

Posted by psdoolittle @psdoolittle, Jan 28 10:53am

I have been navigating a UC diagnosis for about the last 6 months. Previously the stool bleeding was diagnosed as hemmeroidal, but things continued to progress until a colonoscopy revealed serious inflammation in the colon. After a grade 3 diagnosis, the doctors pushed for humira. I tried a very strict, anti-inflammatory diet first, and it helped a lot. Still a little blood in the stool tho. So I tried mesalamine both oral and the suppository. I thought things were improving using b, as the color I saw in the stool was purple rather than red, but doctors said it was still blood and pushed again for humira. I took their advice and am now approaching the 7th injection. I have more bleeding now than ever and I have abdominal pain and urgency. I am definitely in the middle of one of my worst flareups. I had a meeting with my doctor last Friday and brought a sample of the latest stuff coming out of my colon. They analyzed it and said actually, the inflamation markers are down and the test results actually provide evidence that I'm getting better. I sure feel differently in my body, and I'm so confused on what I should do next. Anyone out there have a similar experience and advice? I'm feeling concerned and frustrated.It would help to hear from others who have gone down this path!

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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@dval

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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@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.

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@psdoolittle

@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.

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Yes, the Entyvio was the first biologic I tried. It is “gut specific” and from what I have read about all the biologics for UC, it was the one I felt “almost” comfortable taking. I resisted any and all biologics initially because of the side effects, and the fact that they do compromise your immune system. In my case, the bleeding was so bad, the UC was “fulminant” and my GI doctor advised me to see a colorectal surgeon ASAP. That’s when I realized I had to do whatever it took, so I agreed to try the Entyvio. While waiting for insurance approval, I was taking oral prednisone to help reduce the inflammation. I was able to taper off of that within a few weeks. My loading doses of the Entyvio were 0-2-6 weeks and then every 8 weeks after that. It took about 6 weeks for the bleeding to stop and for the pain to subside. The C-reactive protein and Calprotectin numbers were within normal ranges within 3 months. I also believe the plant based diet has helped tremendously too – no animal products, no dairy, no eggs. I suppose you can call it a vegan like diet and there are several great sites out there with wonderful recipes. I have been maintaining my weight since July too, which is wonderful, as I was down below 100 pounds. My doctor had also recommended a probiotic that used to be called VSL#3, which has been significantly helpful!!! The name this original formula goes by now is Visbiome and it is a fantastic product. I take 2 a day (one after breakfast and one after dinner). They are expensive ($50 for 60 capsules) but worth every dime! Visbiome is the one to get. So, next week I am scheduled for another Entyvio infusion and I am still feeling good. I am in clinical remission and the colonoscopy will determine if the mucosal lining has improved too. Entyvio is FDA approved for dosing every 8 weeks but some people respond better with every 4 or 6 week dosing, which their doctors can get approval for. I would be concerned if I were still bleeding and still had the urgency, as it doesn’t sound like the medication you’re on is effective. That’s a discussion you would need to have with your doctor…. perhaps you can ask about Entyvio? I am one that loves to research and many of the conversations I’ve had with my doctor are based on clinical trials and other things I have read. He’s always a step ahead and is aware of anything I bring him. He’s brilliant, he listens and he cares about his patients! This is a horrible disease and it has altered my life tremendously! It is indeed a journey, one that I have not enjoyed…. but we do what we have to do and learn all we can learn to do the best we can to reclaim some quality of life! I wish you luck and remission!

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@psdoolittle

@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.

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Hi again. Just wanted to add that you can research various articles, studies and actual experiences of others who have been on Humira or any other drug you’re interested in learning about. I found this one today – actual users’ personal experiences. You can also read clinical studies and their data. I know it’s confusing and we all react differently to medications. I research constantly because I believe it’s the only thing I can control with this disease. I keep telling myself that… lol.
Again, good luck and please let me know how you’re doing! https://www.drugs.com/comments/adalimumab/humira-for-ulcerative-colitis.html

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What are your experiences with natural treatnents for U.C. such as—– Resistant starch, inuln, aloe vera. prebiotics & probiotics ,butyrate etc,etc,

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@bosco17

What are your experiences with natural treatnents for U.C. such as—– Resistant starch, inuln, aloe vera. prebiotics & probiotics ,butyrate etc,etc,

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Hello @bosco17, Welcome to Mayo Clinic Connect. You will notice we have moved your post to an existing discussion on Ulcerative Colitis Questions so that you can meet other members who have asked questions and shared their experiences. If you click the VIEW & REPLY button at the bottom of this email notification it will take you directly to the discussion.

I did find a news article that may provide some helpful information. Natural remedies for managing ulcerative colitis: https://www.medicalnewstoday.com/articles/317744

@dval and @psdoolittle may have some suggestions for you. @bosco17 have you tried any of the natural treatments you mentioned yet? Have they helped?

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