Ulcerative Colitis questions: Confused and frustrated

Posted by psdoolittle @psdoolittle, Jan 27, 2020

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 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. Anyone out there have a similar story and advice? I'm feeling confused and frustrated.

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Hello @psdoolittle, welcome to Mayo Clinic Connect. Has your doctor offered any suggestions or have you thought about seeing a specialist?

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@johnbishop

Hello @psdoolittle, welcome to Mayo Clinic Connect. Has your doctor offered any suggestions or have you thought about seeing a specialist?

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Hello @johnbishop . I have been working with a local doctor who refered my to specialists about two hours away from where I live. Both my doctor and the specialists have advocated for the biologics from the beginning. One problem I'm having is it seems I never get the same specialist when discussing my ongoing issues. I feel like I don't have a team invested in my wellness, although I understand perhaps electronic data sharing may in the get an agreed-upon message to back to me. Since the disease has been framed to me as an autoimune disease, I posted here and hoped to hear from others on directions to pursue. I really appreciate the prompt reply and additional assistance.

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You need a continuum of care, which won't happen with seeing a different doctor every time. I'd go somewhere else.

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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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Any advice on panacolitis. Especially managing it. I'm on Panafcortelone 8 a day
Salofalk 4 a day..
Started bleeding again this week. HELP

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@liss75

Any advice on panacolitis. Especially managing it. I'm on Panafcortelone 8 a day
Salofalk 4 a day..
Started bleeding again this week. HELP

Jump to this post

Hello @liss75 and welcome to Mayo Clinic Connect. I noticed that you wanted to connect with members on the topic of ulcerative colitis so you will see that I have moved your post into an existing discussion on the same topic which you can find here: https://connect.mayoclinic.org/discussion/ulcerative-colitis-questions/

Perhaps member @dval can join you and share more?

While we wait for others to join, I found some information that may be helpful to you.
– Ulcerative Colitis – Diagnosis & Treatment: https://www.mayoclinic.org/diseases-conditions/ulcerative-colitis/diagnosis-treatment/drc-20353331

How long have you been on your current medication regimen you described above?

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@amandajro

Hello @liss75 and welcome to Mayo Clinic Connect. I noticed that you wanted to connect with members on the topic of ulcerative colitis so you will see that I have moved your post into an existing discussion on the same topic which you can find here: https://connect.mayoclinic.org/discussion/ulcerative-colitis-questions/

Perhaps member @dval can join you and share more?

While we wait for others to join, I found some information that may be helpful to you.
– Ulcerative Colitis – Diagnosis & Treatment: https://www.mayoclinic.org/diseases-conditions/ulcerative-colitis/diagnosis-treatment/drc-20353331

How long have you been on your current medication regimen you described above?

Jump to this post

Hi Dval here… So much has changed on my roller coaster of hell journey with UC. Entyvio had kept me in clinical and endoscopic remission for 13 months! I felt so good, there were days I forget I had UC! Then I stopped responding and the symptoms returned with a vengeance! In a 16 month period, I went from Entyvio to Stelara to Remicade (with lots of both IV and oral prednisone along the way), and was still flaring! I was hospitalized 5 times during these 16 months, was down to 99 pounds and had scheduled a proctocolectomy. My brilliant GI doctor fought my insurance company to get authorization for a higher dose of Remicade because it did work during the loading doses and I did not have antibodies. It took him 3 months to get authorization because of my low weight. My fecal calprotectin was 1280!!! The higher dose of Remicade, every 4 weeks, seems to be working!! My calprotectin is 27 and I am maintaining my weight! My colonoscopy in July 2022 showed much mucosal healing. So I am cautiously optimistic that the Remicade will continue to work and if not, there are several new drugs with different mechanisms of action that have been approved and I am hopeful… With that being said, I have not ruled out the surgery, as I don’t know if I can go back on that roller coaster of hell…. That’s my story thus far. Other than the Ulcerative Colitis, my health has always been good. I continue a whole food, mostly plant based diet and I walk 4-5 miles a day and do yoga. I also pray a lot… Wishing all of us better health, hope and ultimately a cure for IBD!

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@liss75

Any advice on panacolitis. Especially managing it. I'm on Panafcortelone 8 a day
Salofalk 4 a day..
Started bleeding again this week. HELP

Jump to this post

I have pancolitis too. It has only been a few years but I started with proctitis, which has evolved into full blown pancolitis! The mesalamine (oral and rectal) only helped for a few months and then I tried my first biologic (Entyvio) which worked beautifully for 13 months until I stopped responding. After that was Stelara, which didn’t do much at all. Finally I was prescribed Remicade which worked somewhat and then my GI doc fought to get insurance authorization for a higher dose of Remicade and every 4 weeks at that! So far, so good. For 16 months I was flaring horribly, several hospitalizations, malnourished, under 100 pounds and on mega doses of IV and oral prednisone. Fecal calprotectin was 1280 and I had met with a colorectal surgeon and scheduled a proctocolectomy. The higher dose of Remicade seems to be working and I am cautiously optimistic… Pancolitis is the most severe form of UC, so you may want to think about biologics or one of the newer orals that have been approved over the past year or so (Rinvoq, Zeposia, Xeljanz). There are others and they have different mechanisms of action. Talk to your doctor and decide which one you’re comfortable with… I was thrilled with Entyvio- it has a decent safety profile and it worked for me for over a year. The Remicade is one of the older biologics (TNF inhibitor) but I needed a higher dose for it to work completely. You and your GI doc can decide what is best for you! I wish you the very best of luck and a long remission!

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@dval

Hi Dval here… So much has changed on my roller coaster of hell journey with UC. Entyvio had kept me in clinical and endoscopic remission for 13 months! I felt so good, there were days I forget I had UC! Then I stopped responding and the symptoms returned with a vengeance! In a 16 month period, I went from Entyvio to Stelara to Remicade (with lots of both IV and oral prednisone along the way), and was still flaring! I was hospitalized 5 times during these 16 months, was down to 99 pounds and had scheduled a proctocolectomy. My brilliant GI doctor fought my insurance company to get authorization for a higher dose of Remicade because it did work during the loading doses and I did not have antibodies. It took him 3 months to get authorization because of my low weight. My fecal calprotectin was 1280!!! The higher dose of Remicade, every 4 weeks, seems to be working!! My calprotectin is 27 and I am maintaining my weight! My colonoscopy in July 2022 showed much mucosal healing. So I am cautiously optimistic that the Remicade will continue to work and if not, there are several new drugs with different mechanisms of action that have been approved and I am hopeful… With that being said, I have not ruled out the surgery, as I don’t know if I can go back on that roller coaster of hell…. That’s my story thus far. Other than the Ulcerative Colitis, my health has always been good. I continue a whole food, mostly plant based diet and I walk 4-5 miles a day and do yoga. I also pray a lot… Wishing all of us better health, hope and ultimately a cure for IBD!

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I have been dealing with my UC for almost 2 years now I started on Remicade and it was the miracle drug I believed. It took away all my pain in my stomach also stopped my constant diarrhea and nausea. After being on the Remicade infusions for a year I started to have a lot of pain in my joints and bones and I was getting blurry vision so my doctor did some tests . They said the Remicade gave me drug induced lupus! So they took me off of it and started me on and Entyvio I have had four infusions and so far nothing I am back to the beginning severe stomach pains severe diarrhea severe nausea. Have you had any trouble with the Remicade I keep asking my doctors to please put me back on it I never felt so great as is when I was on the Remicade. All I do is cry and that's not good.

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