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Slowing Down... Start of a Flare?

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Ulcerative Colitis
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Posted 5/9/2016 2:58 PM (GMT 0)
Good Morning All,

I am the wife of a wonderful husband who was diagnosed in 2011 with UC. A little history... He got extremely sick, we started slow on the typical drugs, building up to prednisone and Imuran and eventually Remicade. Remicade (all he has been on) got him into remission and he has been for a couple of years now with no issues... YAY! (he also does not eat gluten and dairy).
However this year joint pain started and would last a few days with major pain and inflammation, he took some Naproxen (MSAID) which we knew could be an issue but only took when needed and seemed to go ok... this have been over the last 6 months or more.

The issue now is over the last 2 - 3 weeks everything seems to be slowing down... he has been very consistent of 2 movement's a day morning and evening... now its once a day and a bit harder and slower to pass after eating (seeing food a few days later rather than same or next day). We are worried this could be the first symptoms of a flare and are looking for some advice...

Have people flared after such a long time on Remicade with out any? what are some steps we can take to try and get him back to how things were going? should we also be using supplements etc?

he has a GI appointment tomorrow and I assume he will issue a colonoscopy... just trying to get ahead of this if need be...

thanks in advance for reading this and any help you can offer?

UCWIFE1142
Posted 5/9/2016 3:43 PM (GMT 0)
I'd say less bms a day is a good sign not a bad one. Are there any signs of blood or mucus within his bms? As those are better signs of a uc flare, along with urgency...
Posted 5/9/2016 4:20 PM (GMT 0)
Thanks iPoop :)

There is no blood or mucus maybe a little bit of cramping and urgency is still normal for him!

I also feel like we maybe worrying for no reason, just the change after so long of same is worrisome and you just never know with this disease and we are still newbies.
Posted 5/9/2016 4:59 PM (GMT 0)
I'd say he's continuing to heal and improving more. Congrats. Don't worry. Sudden reappearing blood and urgency are your best flare signs.

It's common for uc bm frequency to change a bit, try not to worry if he goes a little more or less. I'm in histological remission and I normal have 1 solid, non-urgent bm a day. But I'll skip a day on occasion. Sometimes I might go twice in a day. There's always variations. Sometimes it can be chalked up to what I'm eating (fiber intake is a big one, too much or little has an impact), not drinking enough (dehydration reduces frequency), having a couple alcoholic drinks increases, and other times it's just random.
Posted 5/9/2016 7:45 PM (GMT 0)
Thanks for the encouraging words! so nice to hear :)

I see that you are also on Remicade, how long have you been getting it? and what side effects if any do you notice!?

xoxo
Posted 5/10/2016 12:49 AM (GMT 0)
I've been on remicade for several years now, and I've been in remission for a year now. No side effects to date on remicade. It's satistically small odds of side effects on most biologics. Not prednisone by any means.
Posted 5/10/2016 1:30 AM (GMT 0)
anytime a plan that has been working starts looking different, it's time to figure out why - i would not assume that fewer bm's than normal is a good thing - i would want to know why the change -

with the addition of the joint pains, that would make me even more concerned - yes, people do start experiencing problems after being on remi for some time - some minor, some not so minor -

when was the last time your husband had any blood work done ?
Posted 5/10/2016 10:53 AM (GMT 0)
I've been getting Remicade since around 1997. After a flare, my gastro. doc. upped the dosage and all was fine. I also take Kefir and drink ginger root tea for mild arthritic pain...it works for me. My wife uses turmeric in cooking. Tell your husband to drink enough water. Sometimes it's the seemingly smallest things that make a big difference. Oh how I wished for a day of 'going' only once or twice a day. LOL Stress does not help AT ALL; but that's not always easy to avoid with this illness. Talking with his gastroenterologist is a good thing to do if he is noticing any changes. Good luck
Posted 5/12/2016 3:51 PM (GMT 0)
Thanks :)

It is nice to talk with some one who has been on it for a long time... he is just starting his 3rd year! We went to see the GI and he feels the same that its a good thing that its slowing down even more!! Amazing what this disease can make you worry about!

He has been getting a lot of pains in his joints as he gets close to needing his treatment and the doc thinks that we need to up his dosage as he put on more weight etc... getting levels tested at next infusion :)

I have read a little on ginger root and turmeric and will look more into them see if they can make a difference!

I really appreciate all the info thanks again!

UCWIFE1142
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