I’d like to meet others with ulcerative colitis

Hi @hayder71, I can tell you are very worried about your son and his pain with ulcerative colitis. I know you want him to get better and be pain free, but you're worried because he is not following the recommended treatment and suggestion from his doctor. That must be so tough to watch.

I think fellow members like @fleckster905 @belle1130 @miraklwkr would understand.

What treatment has been recommended for your son? May I ask how old he is?

Completely understand. There is nothing more devastating to a mother then watching your child suffer and you can't do anything about it. It took my son having to be house ridden for almost a year for him to realize he can't eat anything he wants to eat. That is the worst thing that can happen to a 20 year old. Depression set in. I talked with him all the time. He would call me crying in the middle of the day asking me to come home from work. I have a wonderful employer so whenever he called I was there for him. He needed to know someone was on his side. After a few failed drugs, he is now on Stellara for about 6 months. He was doing 40mg doses of Prednisone too. He is now down to 15mg. He is doing much better but still has his days. He knows life can be good. My advice for any parent of a child of this age is to be there for them at any time of the day. This is a life altering disease and when he was diagnosed at 18 he thought his life was over. Now he is 21 and doing well. We are figuring it out together. I wish the best for you, @hayder71, and your son.

Looking for others diagnosed with uclerative colitis

Welcome Penny!
I moved your message to this existing discussion:
- I’d like to meet others with ulcerative colitis https://connect.mayoclinic.org/discussion/i-have-ulcerative-colitis-and-wondered-if-anyone-here-has-it-and/

I did this so that you can connect easily with other members living with ulcerative collitis, like @susanemaa @johnson53rl @jjob73 @hayder71 @fleckster905 and others.

You also find many discussions related to ulcerative colitis by searching for the keywords ulcerative colitis in the "Search Discussions" field on this page: https://connect.mayoclinic.org/discussions/all/

Penny, how long have you been living with UC? How are you doing?

I was diagnosed with IBD in the last few months. I spent 3 weeks in hospital on IV steroids but now at home on a reducing dose of Prednisolone 30mg currently. I’ve had one infusion of infliximab a fortnight ago and await my next in weeks time because the hospital can’t do it sooner. But the flare continues and I’m still in the loo many times throughout the night. Is this normal at the start of infliximab? I have no idea what to eat to help myself and have had no guidance on that. I’ve been off work for 3 months and need to get back asap but just can’t. And like others I feel pretty desperate mentally at times.

Hi, I have had UC now for 4-1/2 years and it has progressed from mild (I was comfortably on Lialda) to severe at this point. I’ve been in a flare since the end of Feb. and am now in my second prednisone taper, as well as Humira, which isn’t working (it’s detected at good levels in my blood, but ain’t doin’nothin’!), so my dr. is switching me to Stelara. Anyone have any experience with Stelara? I’m really hoping it works, as it is scary when you don’t go into remission on a new drug! Forever flare up, no thanks - feel like I’m dying when I’m in this flare for so long. Thank god for the prednisone - though I know it’s not good long term. I definitely don’t drink coffee anymore or raw veggies or spicy food or the smoothies I was making earlier this year to get more veggies in my diet, now I bake them or stew them or roast them. Then, I read that the drugs can put you in remission for 3 years (or more?), what then, a different drug? A stricture? A fistula? Surgery? Colon cancer? And not knowing exactly what makes UC progress is frustrating because then you can’t avoid whatever it is. It’s hard not to think about the future with this disease and it’s so much worse when there’s pain! I use Tylenol, but not needing it with the prednisone taper. I definitely keep exercising and try to keep a positive attitude, rest and eat smaller portions to feel more comfortable. Though exercise and a positive attitude is difficult when in a flare, abdominal cramping, under eating, waiting for Humira to work, and not on prednisone. I’m putting a lot of faith in the doctors right now to sort this out and keep asking them questions and communicating with them through the patient portal. Good luck to all!

Though the doctors are reluctant to tell you what to eat and what to avoid, there’s lots of advice online and then experimenting with those suggestions has helped me. For myself, I found that eating eggs and toast (sourdough muffins) is good (and need that protein). I haven’t desired much fiber when in a flare using the bathroom so frequently, so put my daily oatmeal on hold. Beef bone broth seems to be quite soothing (not stock) (look for the ones with the most protein and least sodium per cup - which over 250 mg sodium is too much. 9 gm of protein or more), chicken noodle soup too. Lots of water to replace all that lost fluid. Applesauce and bananas. Green tea. Something I’ve discovered that I love that doesn’t bother my stomach at all are avocado rolls from the local sushi places. (Nori, rice, avocado). But, like others have mentioned, different foods work for different people.

.I have Ulcerative Colitis...I had it in 2000..but it went into remission until I got Covid 12/19/2021..and then life changed ..I have been in a flare since then..things got really bad and I wound up getting hospitalized last week for four days. They were thinking that The Covid brought this on. I am a long hauler. This nasty disease controls me, I am unable to control this even with medication. Going to a new GI doctor tomorrow. I was told that I may have SIBO also. I wish they would treat me for SIBO and see if it helps. I was told to take Imodium..up to 4 times a day. The only way to make it through work is to take one before I leave the house for work and can barely make it home before symptoms restart. I hope we can all get some answers some day to help all of us.

I do not know if this is helpful or not. Our son Michael had UC for many years just as he was doing his Trial HSC and he lived on Prednisdone for quite a number of years which was not good at his age. He got so bad that they had to take his large bowel out and mould a new one with part of his small bowel. Luckily they did because part of his large bowel was precancerous. He did have some issues along the way with it, having to wear a bag for a time as everything had to heal but today, with some restrictions, he is enjoying a full life.
He is very happy and no Prednidone in site. Dr Peter Loder did a great job to which we thank him very, very much.

I have 2 autoimmune issues and was just diagnosed with lymphocytic colitis. I am taking the 8 Imodium and have budesonide ready to go if it gets worse. UC and covid I can’t totally relate to. This is all such a mental challenge, trying to stay positive. I listen to an audio on YouTube specifically for GI issues, a hypnotherapy session.
Take this one moment at a time and try to do as many “normal” things as possible during the day.
Maybe try to find remote work?
I am here anytime you need a hug.