1. < Digestive Health

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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dval | @dval | Sep 11, 2022
In reply to @liss75 "Any advice on panacolitis. Especially managing it. I'm on Panafcortelone 8 a day Salofalk 4 a..." + (show)
@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

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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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whitedoves2009 | @whitedoves2009 | Sep 20, 2022
In reply to @dval "Hi Dval here… So much has changed on my roller coaster of hell journey with UC...." + (show)
@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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dval | @dval | Sep 20, 2022

I’m so sorry for what you’re going through and sadly, I understand. I must have shed a million tears over what this illness has cost my family and me… The only issue I have had with Remicade was a few patches of psoriasis and that was only a couple weeks when they started the higher dose. If you have drug induced lupus, you have no choice… I know how you feel because early on, my first line of treatment was oral mesalamine and it was working beautifully until it caused drug induced pancreatitis and I had to discontinue it immediately. The next year was hell with the flaring and mega doses of steroids!!! They did have me on Stelara for a couple months and that did nothing! These drugs all have different mechanisms of action and target the inflammation differently. Remicade is a TNF inhibitor and if that worked for you, maybe Humira would work- that’s a TNF inhibitor too. If your doctor says you can’t take that kind of drug, they have recently approved a couple others - Zeposia, Rinvoq. Xeljanz has been out a few years, so there is some hope… and these are all oral medications. Again, I am so sorry and I understand all too well!! The best thing you can do is work closely with your doctor on choosing the next line of treatment. This disease is a relentless bitch and we have to stay on top of it with our doctors. I wish you the very best of luck and strength!! Please feel free to reach out if you have any questions or if you just need someone that understands the roller coaster of hell that you’re on….

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thill99 | @thill99 | Dec 21, 2023
In reply to @dval "Yes, the Entyvio was the first biologic I tried. It is “gut specific” and from what..." + (show)
@dval

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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Hello dval,
Your post is from nearly 4 years ago, and I certainly hope you are improving.
Which Visbiome do you take: Visbiome GI Care 225 billion per 2-capsule dose? Or Visbiome Extra Strength 900 billion per extra strength packet?
Thank you for your recommendation!
With kindest regards,
tmh

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dval | @dval | Dec 21, 2023

I take the capsule and have been for years! I am still on the higher dose of Remicade (10mg/kg) IV infusion every 6 weeks. He started me at that dose every 4 weeks, then after a year and a half, every 5 weeks and now, every 6 weeks. GI doctor does therapeutic drug monitoring to check trough levels and antibody titers, which determines what is in my system and if it is effective, based on inflammation markers, which have been in a normal range, and for all of this I am extremely grateful!!! Thank you for asking. I wish you a long remission and for all of us, ultimately a cure!! 🙏🏻

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abyrnes12 | @abyrnes12 | Mar 30 10:52am
In reply to @dval "Hi, so sorry to hear that you have UC! I too have severe UC and have..." + (show)
@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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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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1 reply
dval | @dval | Mar 30 11:58am
In reply to @abyrnes12 "I also live in central NJ. Red Bank area. My drs are in NYC , looking..." + (show)
@abyrnes12

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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Of course! Since this posting, much has happened! I developed antibodies to the Entyvio and was switched to Stelara, which did NOT do anything for me. I had 16 months of pure hell, flaring, 5 hospitalizations, lots of prednisone (both oral and IV) and finally, a higher dose of Remicade (infliximab) infusions (10 mg/kg) every 4 weeks got me back into remission. Once again my brilliant GI doc had to battle my insurance company to get authorization for the higher dose, as I was barely 100 pounds. While waiting, I had scheduled a proctocolectomy and was able to cancel that less than 2 weeks before it was to happen. The colorectal surgeon is at the same hospital. I have been in remission over 2 years and get the Remicade infusions every 6 weeks now. My GI doc does therapeutic drug monitoring to test inflammation markers, trough levels and antibody titers every few months to make sure the levels are adequate and that I have not developed antibodies. I am blessed to have this brilliant caring doctor! His name is Anil Balani, MD and he is with Capital Health. Good luck to you!!

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abyrnes12 | @abyrnes12 | Mar 30 12:53pm

Thank you! I’m presently on Humira weekly ( just started weekly) . Only have had 3 weekly doses and hasn’t helped. Dr wants me to continue for a few more weeks -(even though been on it every 2 weeks since November). Making me feel so nauseous and tired. I’m looking forward to changing meds and feeling better.

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1 reply
dval | @dval | Mar 30 1:53pm
In reply to @abyrnes12 "Thank you! I’m presently on Humira weekly ( just started weekly) . Only have had 3..." + (show)
@abyrnes12

Thank you! I’m presently on Humira weekly ( just started weekly) . Only have had 3 weekly doses and hasn’t helped. Dr wants me to continue for a few more weeks -(even though been on it every 2 weeks since November). Making me feel so nauseous and tired. I’m looking forward to changing meds and feeling better.

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I’m so sorry and I understand the frustration and devastation! This is a life altering disease, a roller coaster of hell, if you will… Remicade was my first and only TNF inhibitor and I’m grateful it is working, but the fear never goes away…. The one positive for all of us is that several newer drugs have been developed, with different mechanisms of action. They scare me, too, but my doctor taught me to focus on benefits vs. risks. So I take it one day at a time and try to be grateful that the good days now outnumber the bad ones… and my GI doc stays on top of it should things get bad again… 🙏🏻. I wish you the best and a very long remission!

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