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Posted 6/29/2023 5:15 AM (GMT 0)
Hey guys, always interested in other UC sufferers remission and how they are during it. I’m currently now recently out of a horrendous flare which i was hospitalised. Roughly 2.5 weeks now in full remission on Xeljanz which thankfully got me out the flare. The IV steroids did nothing in hospital. Touch wood, usually when I’m on some sort of maintenance drug, I usually maintain long term remission. Was in remission 5 years on Azathioprine until i got taken off it and was in remission 3 years on Infliximab before coming off it due to high anti body formation, so hoping Xeljanz does the same thing. Anyway, in remission I literally go once or twice a day. Perfectly normal formed stools with zero UC related symptoms whatsoever. I eat what i want, when i want and how I want. No diet or food related affects my gut in remission. I don’t like Spicy food anyway by choice, so lay off that purely as I don’t like it. In a flare obviously i lay off dairy, fatty foods and anything that can affect the gut. In remission i eat to my hearts content. It’s an absolute fantastic feeling having a perfectly normal gut, especially when you’ve been in a horrible flare. Just wondering is everyone’s remission like this? Or do you have some sort of UC related symptom in remission?
Posted 6/29/2023 6:08 AM (GMT 0)
I’ve been on Humira for almost 7 years and have had only one minor flare in that time. It was quickly resolved with a short prednisone taper.

When I’m in remission, I go once maybe twice a day. Formed stools, no blood, no urgency. I think very little about UC when I’m in remission.

If I eat too much popcorn, it gives me really bad stomach pain and diarrhea even in remission, so I do try to limit that, but otherwise I eat and drink what I want.

I feel very very fortunate to be in remission for this long
Posted 6/29/2023 12:27 PM (GMT 0)
My remission is like yours, I can enjoy a cold beer with any foods I like with no downside. I drink kefir always, just a small amount in the morning to keep gut microbes healthy. I exercise every day and eat a plant based diet. The only thing that has remained forbidden is coffee, I used to drink it before UC but even in remission, it goes through me like rocket fuel.
I was surprised when I first got UC, I always thought my healthy lifestyle would prevent disease but it doesn't work that way unfortunately. When I flare, it feels like I'm dying, my whole body becomes inflamed including my blood which makes me develop blood clots. A decade of remission on Imuran but taken off due to skin cancers, now on Rinvoq, hoping for the best.

Post Edited (beatUC) : 6/29/2023 4:53:05 AM (GMT-8)

Posted 6/29/2023 1:14 PM (GMT 0)
Pretty much the same here, 1-2 formed, not urgent poops a day without blood or pain. Occasionally I'll skip a day. No dietary restrictions, enjoy a craft beer most nights, occasionally have a greasy burger with fries and a soda. Great quality of life without significant impact of having an UC. My only bowel complaint is hemorrhoids. Been in a remission 9 years and counting on remicade.
Posted 6/29/2023 2:46 PM (GMT 0)
I've been in remission for many years. I do watch what I eat most of the time and try to keep my stress levels low.
Posted 6/29/2023 4:16 PM (GMT 0)
I'm sorta in remission??? I say that because Remission IMO should be a lack of all symptoms.

Been on Remicade for 8 years. I have to watch my diet depending on the medication calendar. I still have daily extra intestinal symptoms. (Psoriasis, heat Intolerance, night sweats, fatigue, nausea+++) Not all of the listed occur daily... I just have at least 2 or 3 daily. BUT my colon looks pretty good and I feel much better than when in a flare.

That 2 to 3 week period right in the middle of my infusions... I can eat almost anything in moderation. A diablo Burger about did me in one time so I'm a little more cautious.. lol.

I have a colostomy so I don't think my numbers are pertinent.

Disclaimer... My GI said I'm just one of the few that developed Severe UC/Aggressive Severe Fistulizing Crohn's and as such I'm probably going to be one of "the worse case scenario" situations for others to compare themselves to. My diagnosis hasn't been changed since the beginning... A lady in my support group was changed to Mild UC.... I was so jealous.

I've just this year... Finally.... Been able to drink a little glass of wine occasionally. Beer... I still can't even take a sip.... It's like rocket fuel.

Clo

Clo
Posted 6/29/2023 6:30 PM (GMT 0)
Remission on entyvio for 5 years (or is it 6? Can’t remember without looking at my signature!)

I eat pretty much everything I want. I do have the complication of frequent diverticulitis, so my diet restrictions tend to come from that. My best weapon is Metamucil and then stool softeners or miralax to ensure a BM everyday. Avoiding constipation (to which I am prone) seems to be key in that regard.

I do occasionally have cramping but it’s very hard to tell if it’s UC, diverticulitis, or scarring or narrowed gut. The 1st line of defense for diverticulitis is liquid diet to rest the gut and it seems to help usually. And avoiding sugar for awhile and then a low res diet.

The only food I regularly avoid is broccoli as I had horrible pains and gas last time I ate it in a flare and I just can’t bring myself to eat it again. Ditto for tomato sauces like marinaras as that was what I had for a meal right before a horrible diverticulitis attack and I associate it with that even though intellectually I know the two aren’t related.
Posted 6/29/2023 6:48 PM (GMT 0)
clo2014, I'm confused,
"I have a colostomy so I don't think my numbers are pertinent. " I don't understand.

Why would you be on Remicade if your colon was removed?
Posted 6/29/2023 9:08 PM (GMT 0)
BeatUC,

With a colostomy you still retain a portion of your colon. With an ileostomy they have removed your whole colon.

My Remicade is due to a dual diagnosis of both UC and Crohn's disease.

UC usually develops next to the previous spot and is located in the colon. Remove the colon and you usually have permanent remission/cure. With Crohn's disease they try to remove as little of your intestine/colon as possible. Crohn's is patchy. It can develop anywhere from the mouth to the rectum. So they usually only remove the "bad" portions in Crohns. Since my GI and CRS diagnosed both UC and Crohn's they are trying to save as much as possible. I've had 4 surgeries since 2015. They believe that if we do it this way 20 years down the road I will still have enough intestines/colon to process food so I can hopefully avoid TPN and short bowel syndrome. Mayo concurred.

So I have a colostomy. My colon is full of scars and narrowed but it still is functioning. The Remicade is supposed to help both.

Hopefully I explained it correctly.

Clo
Posted 6/30/2023 1:09 AM (GMT 0)
Usually 1 sometimes 2 times a day, but not always perfectly formed. Pretty sure that is all diet related. If I eat a lot of fiber stool is fluffier, when I don't eat enough or drink too little water it can be harder and thinner. Food doesn't really bother me though (even spicy food and nuts) ... I just need to be more balanced. Mostly I love saving on toilet paper lol Amazing how fast I went through a roll when I was flaring badly.
Posted 6/30/2023 6:21 PM (GMT 0)
Thank you Clo, very well explained. I'm sorry you went though all that and are still.
Whenever I am feeling "woe is me" I think about how many other UC/Crohns patients have been through much worse than me and it breaks my heart to think of children with this disease. Also dealing with this disease now vs 100 years ago, no comparison!
best to you!
Posted 6/30/2023 7:26 PM (GMT 0)
Don't forget surgery can save lives. Couldn't do that even 50 yrs ago. Best decision I ever made
Posted 7/2/2023 1:28 PM (GMT 0)
I am always afraid of using the “r” word, but I have been symptom free since late 2019 on colazal and Imuran. I generally have 1 BM a day, sometimes 2 and sometimes none, typically formed and normal looking.
I don’t eat gluten at all, but I am fine with gf whole grains when not flaring. Gluten seems to be a huge trigger for my digestive system but I have started eating dairy again occasionally with minimal issues. I had a lot of trouble with dairy pre-UC so I rarely ate it then. I eat salads, lots of fruit, beans, etc. I’m back to eating normal foods but I will say I approach every meal still with the thought of how it will impact my gut. I keep hoping that will pass, but I have a lot of anxiety around food still.
Posted 7/5/2023 12:06 AM (GMT 0)
I have been in remission for ~5 years on mesalamine (currently Pentasa).

I almost never think about UC now and my bowel movements are, as far as I can tell, normal.

I was diagnosed in 2012 with pancolitis. It was while I was in university. I started having loose stool and thought I had a stomach bug. It progressed over 1~2 weeks until I was basically disabled. Got a colonoscopy and they put me on prednisone and asacol HD (mesalamine). At the same time I did some reading on the internet and immediately went headlong into SCD and stayed on that very (99% at first, 100% later on) strictly until 2017.

I had a few flares of decreasing intensity and I think the last was in 2017, maybe 2016. I went back to a pretty normal (bad) diet for a few years and still didn't have any UC symptoms. Now I am almost-but-not-quite vegan (only eat a small amount of animal products from a local farm) eating a high-fat, moderate carb diet (most of the fat comes from coconut milk and avocados). I eat the same thing almost every day: Thai curry for brunch and salad for dinner. I like spicy things and load up the curry with habenero peppers and capsaicin extract. I don't attempt to feed it to other people anymore because in the past I've learned that even just a few drops on a spoon causes most people to cough and hiccup and have a bad time. Usually one day per week I'll cook something different, and often include some snacks like cookies.

I supplement with vitamin D3, B12, and acidophilus.
Posted 7/5/2023 12:48 AM (GMT 0)
I'm not pre-UC normal, but I have no pain, usually 1-2 BMs per day, no mucous or blood, no tenesmus. My stools are what are not usually "normal." They're usually mushy (I think this might be from mesalamine but not sure) and often narrow. Occasionally, I do have a day or two that are a little "off," usually if I've missed a dose or two of Xeljanz.
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