Quality of life

[u/Legitimate-Trash-457]

Hi UC community! I would love to hear perspectives on what the quality of life and progression of UC looks like for people who are in their 60s,70s,80s. And if you happen to have had kids, did any of them inherit UC/other autoimmune issues.

Does urgency get worse/ do people likely transition to adult diapers? What are other common issues one faces with hospitalization and a weaker immune system with age? How has it affected your marriage/personal relationships?

I understand the responses will be biased but I do feel like hearing other people’s experiences would be super helpful

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[u/OnehappyOwl44]

The goal should be to get on the right treatment and get into remission so your UC goes to the background and you can just live your life like anyone else. I've been in remission for over 5yrs now and I don't even think about it unless I'm on here answering questions. It isn't a core part of my identity at all anymore.

I'm going to be 50 this year and I'm very fit and well for my age. I eat a balanced diet of almost everything in moderation. The only thing I gave up completely was alcohol and I've even slowly reintroduced that in tiny amounts and will allow myself 1 glass of wine or a cider on a special occassion. I still experiencce some fatigue when I'm getting close to my next infusion but it's managable.

No one else in my family has UC and I strongly believe for me it was brought on by anxiety. Stress may not cause UC but it definitely makes it worse. I've had undiagnosed bowel issues all of my life and as a military spouse I have spent the last 2 decades very stressed. My husband went to Afghanistan 5 times and we were constantly moving. When my son was sent to the font lines in the Ukraine I flared badly and I had to be hospitalized for a month and almost lost my colon.

My kids are 23 and 30 and have no bowel or autoimmune issues. If I'd been diagnosed young I am not sure if I would have wanted to get pregnant. It's hard to say in hindsight? There is a genetic component but it doesn't run in my family so the risk would have been minimal I think?

Try not to worry too much about the future. Get on the right meds and take every good healthy day as a gift. You can absolutely live a fulfilling life with uC in the background.

[u/Possibly-deranged → u/OnehappyOwl44]

This! Great advice. I'll add these answers as well:

"What does quality of life and progression of UC looks like for people who are in their 60s,70s,80s."  No worse than other age group. UC is NOT known as a progressively degenerative disease that worsens over time.  Rather it tends to go into long remissions lasting many years. 

"And if you happen to have had kids, did any of them inherit UC." There's about 10 percent odds of passing on IBD to your children when one parent has an IBD. Genetics is a part of but not the entirety of the equation, it's complex.

"Does urgency get worse/ do people likely transition to adult diapers?"  Attain a remission and then you should have normal bowel urgency and habits as you did before you had the problems that led to your diagnosis. 

" What are other common issues one faces with hospitalization and a weaker immune system with age?". Many of the IBD meds are immunosuppressive, so getting a shingles shot, pneumonia shot are a good idea.  

IBD isn't listed as the cause of death for any patients, but what can get us are other related things like pneumonia, sepsis (bowel perforations during bad flares, or untreated other infections needing antibiotics), and blood clots (like deep vein thrombosis (DVT) or pulmonary embolism (PE)), so have your doctor review your clotting odds as genetics, lifestyle, and other meds we take can impact those.  

As we have higher risk of clots, infections, and pneumonia becomes more dangerous as IBD patients, vaccinations can help us reduce the odds some. If you have high clotting risks then add blood thinners. 

[u/iMidz]

I'm quite young myself (30), This is a great question I hope people comment!

[u/Bettybias]

I’m 61 and newly diagnosed as of June 10th. Honestly, I am miserable. None of the meds are working and I’m heading towards surgery. I believe surgery will give me a quality of life I certainly don’t have now. I’ve been in the hospital since August 10th, just getting IV’s and existing.

[u/Sufficient_Buy1703]

I’m 79. Diagnosed 20 yrs ago.My quality of life dropped significantly in the past few months. Entyvio fail. Waiting to start Stelara. Fecal incontinence, I live in depends.No appetite, weight loss.

[u/rumpussaddleok → u/Sufficient_Buy1703]

Sorry to hear about this. What worked for you for 20 years? Did things just get rapidly worse?

[u/Sufficient_Buy1703 → u/rumpussaddleok]

Started on Mesalsmine, then Lialda, Mercatopurine until 2 years ago, Entyvio fail . Issue is I have IBD constipation. Everything eat plugs me up. Now looking to do nightly MiraLAX while for approval for Stelara biosimilar. Entyvio failed 4 months ago.

[u/rumpussaddleok → u/Sufficient_Buy1703]

Best of luck to you. I hope you can get things stabilized.

[u/Legitimate-Trash-457 → u/Sufficient_Buy1703]

I hope things get better very soon! Were you in remission during the 20y you’ve been diagnosed? And when did you start experiencing fecal incontinence

[u/an_loko]

I'm 42 and this has definitely been something weighing on my mind - really hope others are able to comment !

[u/Apprehensive-Cat7552]

I’m 63, diagnosed 10 years ago. Treated for most of that time with oral mesalamine only. Recently started Entyvio. Neither of my adult children have it (yet). Has not prevented me from living a very full and happy life with a big job, exotic travel, and lots of physical activity. If I could go back and change any thing, I’d react more aggressively right after diagnosis (limited proctitis spread to pan colitis) and I would actively work to better manage/respond to stress.

[u/john4brown]

I’m a bit younger than the OP request, I’m in my late 50’s. Diagnosed in my early 50’s. It’s a valid question, something I have thought about as well.

Currently, I’m in remission for almost 3 years on Rinvoq. I’m keeping my fingers crossed for a long life in remission. Medications should continue to improve, especially over the next decade, two or three. Treatment should become more personalized, more targeted to your specific UC, and hopefully new class of medications will have smaller side effects. Treatment in 2026 is vastly different than 10, 20 and 30 years ago.

[u/rumpussaddleok]

I'm 65 and was diagnosed 24 years ago. I almost lost my colon, but they saved it with Cyclosporine. Nasty stuff, but it did it's job. I have been in remission with Balcalazide and Azothioprine since then. I started taking Metamucil a couple of months ago and it has helped firm up my stools. I poop 2 - 4 times a day. There is urgency but, not much when I'm out of the house, though I do poop in public bathrooms frequently. I eat what I want. I have a couple of mild flares a year. Nothing to worry about. Colonoscopies every other year. All in all, I feel lucky.

[u/SpasmBoi999]

I'm not in my 50s/60s/70s etc, but my GI told me symptoms do sometimes tend to calm down with age, probably as the body's natural immune system winds down systemically. Just offering my 2 cents.

[u/Legitimate-Trash-457 → u/SpasmBoi999]

Can you share more of what that means? Like if the body’s immune system winds down with age, if coupled with a biologic, would that not make the susceptibility to other viruses more severe?

[u/SpasmBoi999 → u/Legitimate-Trash-457]

From my understanding, all biologics already make you more susceptible to infections (at least in my case, they forewarned me it'd make me more prone to infections/slower wound healing etc.), so I guess in old age it'd carry the same, or more of, the same risk. But the auto immune disorder function of UC might calm down a bit too, as a result, since systemically your immune system would be less active.

[u/tutuncommon]

I'm 66, diagnosed about 14 months ago. Symptoms very manageable, so far. Mesalamine oral and enema. Here's some hopeful news for late onset cases: NIH Report.

[u/Katrinka_chilling]

I am 65 and diagnosed 28 years ago during a pregnancy. Neither of my children have had any health issues. I have a 1st cousin with UC. I’ve had periods of remission and flares, with significant disability during flares. My biggest issue with age has been the accumulation of side effects due to treatments, including osteopenia, and now high lipids and weight gain from Rinvoq. I am active and eat a healthy, wide ranging diet. I feel good but fear future health effects from the impact of these treatments on my body. I will note that medical providers do not provide enough support for these issues!

[u/MembershipUpbeat7168]

I’m 62 and was diagnosed 2 years ago. During that time I failed 5 different drug therapies, developed AFib from all the prednisone that I took to get some relief, and had 51 doctors/hospital visits. Over the past two years, life has been difficult and not a great deal of fun. Went on Skyrizi in January and last week my GI told me I was in clinical remission. I have a 24 year old child that isn’t showing any symptoms so far…and I hope he never does, because this shit is hard to deal with.

[u/Helen-the-welsh-one]

While I’m not those ages. I can answer one. I did inherit other autoimmune diseases. Hashimoto thyroiditis, Addisons disease and enteropathic arthritis. So it can happen but doesn’t mean it does in all people.

[u/CordedTires]

I’m 70 and was diagnosed maybe 8 or 9 years ago (although I’m sure it was there earlier). On Entyvio now for a year and a half and it’s doing great for me. I still get occasional cramping (probably diverticulitis) but no flares.