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.

Interested in more discussions like this? Go to the Inflammatory Bowel Disease (IBD) Support Group.

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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I have a twisted colon. Can that make UC symptoms worse? Have to go to Mayo. Why do my scopes look great but diarrhea and cramping has been awful for years? Entyvio is obviously not working! Is surgery the next step? I hate being a guinea pig with these potent biologics. Can anyone relate? What are the symptoms of bowel cancer?

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Profile picture for mariajean03 @mariajean03

I'm constipated every day on a low residue diet for moderate to severe ulcerative colitis. What should I do?

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I've been flaring for years with Entyvio. Now, in the last 3 months it's turned to constipation with 2 fecal compactions. Has this happened to anyone else? Is Miralax safe to take daily. In the process of finding a new GI. Scared. Maria.

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Profile picture for mariajean03 @mariajean03

I'm constipated every day on a low residue diet for moderate to severe ulcerative colitis. What should I do?

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Hi @mariajean03, I moved your discussion and combined it with an older discussion of yours titled, "Ulcerative colitis: What helps with constipation?" - https://connect.mayoclinic.org/discussion/ulcerative-colitis-2 so you could reconnect with members @stress, @dval @mariajean03 and @marilyncarkner.

@mariajean03, how did you manage your constipation when you first posted in 2020?

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Profile picture for mariajean03 @mariajean03

I'm constipated every day on a low residue diet for moderate to severe ulcerative colitis. What should I do?

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I did not have constipation then. I've been flaring with diarrhea for 4 years. Only in the last 3 months has it turned to constipation. My pharmasist said MiraLax is good but it makes me feel a little nauseas thru the nite. But it works in late morning. Still cramping but not as bad as with laxatives.

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Profile picture for mariajean03 @mariajean03

I've been flaring for years with Entyvio. Now, in the last 3 months it's turned to constipation with 2 fecal compactions. Has this happened to anyone else? Is Miralax safe to take daily. In the process of finding a new GI. Scared. Maria.

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Hi @mariajean03

I've been living with UC for 19 years. It wasn't so bad at first but in the past 2/3 years its been tough. I was introduced to miralax but my GI specialist and It works. It's very safe. Hospitals give it as a daily drink to help with a daily clean out, it's used in colonoscopy prep. It's actually the only prep i prefer to use because it has no taste. I try to drink it at least 2/3 times a day to see any affect. I drink it with water, juice or tea/coffee.
I was recently on Entyvio for bleeding from the colon and it didnt work for me. I've moved onto Inflectra but kind of scared at what the side affects will do later in life.

Hope this helps

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Profile picture for mariajean03 @mariajean03

I'm constipated every day on a low residue diet for moderate to severe ulcerative colitis. What should I do?

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You helped a lot. Thank you! Can you tell me what Inflectra is? I've never heard of it. Maria.

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Profile picture for mariajean03 @mariajean03

I'm constipated every day on a low residue diet for moderate to severe ulcerative colitis. What should I do?

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Agreed with the Miralax! I've had chronic constipation since I was a toddler. [I'm 80 now] My PCP suggested about 2 years ago that I try the powder, along with a good stool softener. I am SO thankful that I finally have a "fix"! After getting the dose regulated, I now take only about 2/3 of the does, and NO softener! I hope it works as well for you. I'm sure it is different for each person, so it will take a while to figure out what works best for you. Of course, there will be little episodes of ups and downs, but you'll get it figured out.

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Profile picture for mariajean03 @mariajean03

I'm constipated every day on a low residue diet for moderate to severe ulcerative colitis. What should I do?

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To Mariajean03: Miralax is excellent. Hope you'll give it a try.

A question re: your diet. Why low residue? I have had UC for the past 35 years, and have found that eating fibrous foods (beans, for example) is a great help in keeping my colon working as it should.

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Profile picture for dval @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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