Ulcerative Colitis questions: Confused and frustrated

Try Resitant Starch mixed with Greek Yougurt and Pro biotics

Greetings to all,A Man currently 59-year-old diagnosed with ulcerative colitis since the year of 2000 .Things were under the control until 3 years ago, when he became a refugeee and quit smoking two years ago his living and financial conditions began to deteriorate and a constant attack of bloody diarrhea and huge amounts of mucus and difficulty in passing stools despite the diarrhea is very terrible. And had become to need dozens of times a day to go to the bathroom,sometimes every two minutes, and startes to loses a control or control over in the exit of mucus and blood,this causes him hugely embarrassment and he never feels comfortable.He is a poor refugee fleeing from the internal war in his country and wants to treatment in order to work and live normally.The country which he is living now as a refugee does not have or give a real effective treatment. What do you advise him medically? also are there any associations or people who can helps him bear the high costs of treatment?
thank you very much
Tahuna

Hi @tahuna, welcome to Mayo Clinic Connect, an online community connecting patients.

I can see you care about your friend and are looking for ways to help him. I can't imagine living as a refugee and not having access to good health care that he can trust. Fellow patient members like @dval @mariajean03 @marilyncarkner and others may be able to share ways that they have managed diarrhea, difficulty passing stools and losing control of bowels.

For treatment options used by Mayo Clinic, you may wish to review these articles:
- Ulcerative colitis treatment https://www.mayoclinic.org/diseases-conditions/ulcerative-colitis/diagnosis-treatment/drc-20353331
- Ulcerative colitis flare-ups: 5 tips to manage them https://www.mayoclinic.org/diseases-conditions/ulcerative-colitis/in-depth/ulcerative-colitis-flare-up/art-20120410
- Ulcerative colitis can be debilitating https://newsnetwork.mayoclinic.org/discussion/ulcerative-colitis-can-be-debilitating/

Although ulcerative colitis usually isn't fatal, it's a serious disease that, in some cases, may cause life-threatening complications. I sincerely hope your friend gets the medical attention he needs and deserves.

Dear Colleen, I would like to thank you for your concern for my friend's medical condition, and I will share with him the links you sent me. thank you from all my heart. May God bless you.

For self treatment, I found Magnesium Oxide supplement capsules, 500mg - 1 gram, are helpful for constipation relief., routinely with or without stool softeners. Next step up prior to rxs is adding some Philips Milk of Magnesia. ‘Hope this helps.

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

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?

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!

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!

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.