Ulcerative Colitis questions: Confused and frustrated
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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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….
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?
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.
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?
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.
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
You helped a lot. Thank you! Can you tell me what Inflectra is? I've never heard of it. Maria.
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.
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.
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