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Posted 2/15/2017 8:29 PM (GMT 0)
Hi. I am new here. I have a 30 year old son who was diagnosed with UC in May of 2015. He is now on Lialda and Humira and seems to be doing okay but is quite a stoic guy so it's hard to tell. He says he's fine when I do ask how he's feeling. I don't think he's in remission. He's a personal trainer and hasn't missed a day of work since this all started even though at one point he was losing so much blood he almost needed a transfusion. Luckily the Humira kicked in.
Anyway, I could cry every time I think of him having to deal with this. I never know how much I should ask how he's feeling or makes suggestions about changing his diet. I have him also seeing a integrative medicine doctor who has him on a few other natural things to help with the inflammation. I have found a site called ihaveuc.com which has provided much information but I need support. I worry all the time.
Is it possible to live a fulfilling life, dating and all with this disease????
Posted 2/15/2017 9:07 PM (GMT 0)
I'm also a parent of a son with what is probably UC (that or Crohns). But my son is much younger (10). Thanks to the medicine we have been graced with, he's living a normal life for a 10 year old other than a lot more doctors visits and hospital visits for his infusions. He's on a swim team and never misses practice because of it (except on infusion day- he gets that day off).

If your son's medications are giving him substantial relief ( which it sounds like they are) he'll adapt to whatever challenges his disease creates for him. People are resilient. You said yourself he hasn't missed a day of work since it started.

I understand your pain. There is nothing worse that seeing your child, even an adult child, suffer.
Posted 2/16/2017 2:31 AM (GMT 0)
Yes it's possible to live a fulfilling life with UC, go to college, work, date, have kids and a family, and enjoy hobbies.

Remission is key, as that yields the best possible quality of life. In remission, i have 1 normal looking bm a day without urgency or signs of symptoms.

Remission isn't always easy to achieve, took me 2 years. Some find it quicker, others take longer. Just treat UC aggressively and treat from both ends. Rowasa enemas are a big help, as for a prescription. Combination therapy is always best. Better to use multiple meds simultaneously to achieve it.
Posted 2/16/2017 2:40 AM (GMT 0)
you might suggest he visit this site himself - information exchange would be much easier -
Posted 2/16/2017 2:52 AM (GMT 0)
Don't over do it asking him questions.Be supportive when he brings up how his UC is.
Posted 2/16/2017 4:57 AM (GMT 0)
thank you all so much for those posts! I find myself consumed with worry at times and don't know who yo share my concerns with . I'm glad I reached out for and received words of optimism, understanding, and good advice . Thank you.
Posted 2/16/2017 6:16 AM (GMT 0)
I think your son is off to a great start taking his prescription medication and also seeing an integrative medicine doctor. I find that combining medications with supplements to have been the most helpful. During flares, i also see an integrative medicine doc, which is reimbursed by my insurance smile

Yes, it's very possible to have a fulfilling life with UC. My life has definitely been more challenging than the average young person due to have an illness, but I have a long-term partner, supportive friends, finished college/grad school successfully and am working full-time at my dream job. I have not given up on any of my dreams---just have to get creative about how to make things work with UC. I have a few friends with UC who are also working and are married etc. During flares, I do take very good care of myself and slow down at work.
Posted 2/16/2017 1:39 PM (GMT 0)
We have posters who've had UC for 20, 30 years or more and they do fine. Remissions can last 2, 5, 8 years or more during which time we're essentially normal and can go about our lives without worrying at all about UC. We all eventually flare again, but try to keep our flares as short and infrequent as is possible by keeping up with our UC treatment whether feeling good or bad.

Initially, finding the right UC treatment can be trial and error and a bit frustrating as there's no instant gratification fix. Usually the first 5 years is when UC is the most aggressive and our lives the most turbulent. We can likely change meds and flare the most frequently during that period. Afterwards UC tends to settle and be more stable. Once you know your illness, the warning signs, and how to respond quickly to treat it, we worry less and control UC more confidently.
Posted 2/16/2017 1:53 PM (GMT 0)
if I could hug you Moderator I would.
Posted 2/16/2017 5:45 PM (GMT 0)
Ipoop is right! the first 5 years are the toughest. I was dignosed at age 22 and today I am 31 yrs old. I remember it took me a long time before we found the right meds for me that put put me in full remission. it isn't easy living with this disease but you try to enjoy all the good days. Even if ive been in remission for almost 4 yrs I still think oh no is it a flare coming up when I get a small stomach ache. I think best way to go is just try to cheer him up when he is having bad days!!!
Posted 2/16/2017 7:18 PM (GMT 0)
There is so much of variability on what makes someone feel good when in the flare or coming out of the flare. What I did, when I was new, I went through this board for almost 3 months to see what everyone is doing and what makes them feel good. Made my notes and started putting each and everything in practice. Few things helped, few didn't.

What helped me immensely is to control what I eat. I added a ton of fiber (once in complete remission), cut out processed food completely, seriously, not even a speck. In short, I do not eat outside. Added resistant starch to the regimen, played around with various probiotics and now I rotate a select few. I agree with iPoop, it takes about 5-6 years to get hang of this disorder but once you get you, you try to outsmart it.

I am also trying to put meditation in practice as stress is a major trigger for me. So far, I have not been successful but I will keep on trying.
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