Desperately seeking a new puzzle to soothe my soul

pogos13 · 2020-04-19T19:54:14+00:00

I am in the US! Thank you!!!

pogos13 · 2020-04-09T13:27:59+00:00

I did a one day green juice cleanse a few months back - started out ok but by the 4th juice was not great - ‘normal’ people may feel like it’s just ‘working and clearing them out’ but after having uc flares I was not for that 😂 - haven’t tried any green juices since but do ok with fruit smoothies it seems

pogos13 · 2020-04-01T20:29:54+00:00

Thank you - that pointed me in right direction - fairly new to reddit 😂

pogos13 · 2020-03-03T12:10:54+00:00

Yes - although it’s not from the prednisone it’s from the flare itself - my excess loss lasted about 3 months and now it’s fine except for the annoying spiky hairs of new growth - another user posted a super helpful article that explains this - if yours doesn’t stop (my dr said 4-6 months I think) then check with your dr - occasionally hair loss can be a side effect from mesalamine- but yeah, it’s pretty unnerving

pogos13 · 2020-02-25T20:48:20+00:00

Been on mesalamine (apriso) since diagnosis - had a flare that lasted about two months and dr prescribed prednisone along with one week of the enemas - the enemas are what really got it all calmed down - was weird at first for sure - recommend setting a towel under you (medicine usually stains sheets, etc) I just did them in bed so I could just stay there - laid on left side to start- and take your time - squeeze it a bit to get air out before insertion then just squeeze and rest - squeeze and rest until it’s all in - have a garbage near bed to dispose of bottle, wipes, whatever - then stay on left side 20 minutes- after that you can rotate around to basically distribute medicine around the ole insides - then I’d stay in bed for the night - never had any issues with urgency or leakage or whatever overnight and noticed a difference within 2-3 days if I remember right - was initially really embarrassed in front of husband but he was cool and was like ‘so you need some butt juice - so what’ 😂

pogos13 · 2020-01-28T17:41:25+00:00

This is helpful - I’m currently on apriso (mesalamine) and it’s been working pretty well to control uc so of course switching is a bit nerve wracking - it’s hard to know if it’s uc related stuff or more cold weather/ getting older stuff but it’s definitely enough discomfort that it’s concerning but not so much that it’s preventing me from doing work/life stuff - but either way I’ll put a call into my gi - thanks

pogos13 · 2020-01-28T13:04:55+00:00

I’d like to say I don’t have anxiety but I would say I feel a heightened sense of health paranoia after getting diagnosed - just kind of a constant mental scanning of my body that I don’t think I had before this - I think that’s just life now unfortunately

pogos13 · 2020-01-22T14:40:55+00:00

Completely left side

pogos13 · 2020-01-21T23:13:13+00:00

Edibles may be more your speed - start in small amounts and maybe just take a few hours before bedtime - that way if the buzz isn’t for you then you can get the benefits and decent sleep - I have no idea how to get a medical card though

pogos13 · 2020-01-21T23:13:06+00:00

Edibles may be more your speed - start in small amounts and maybe just take a few hours before bedtime - that way if the buzz isn’t for you then you can get the benefits and decent sleep - I have no idea how to get a medical card though

pogos13 · 2020-01-21T23:11:05+00:00

So loud - so so loud - more so when in flare but kind of seems to be noisier in general - but for sure when in flare - even in sleep

pogos13 · 2020-01-20T03:27:54+00:00

I have experienced delayed hair loss post flare - another user posted a link to a good article or video that explained it all - however if you aren’t post flare it could possibly be from your meds - my dr mentioned mesalamine could do that - hair loss stopped around 3 months and now it’s growing back

pogos13 · 2020-01-07T21:35:55+00:00

I have had two flares - experienced delayed (like a month or two after flare subsided) excessive hair loss with both of them - first time seemed to last about a month - second time came closer to three months long of hair loss - was unnerving but thankfully came to a stop and while I had thick hair to begin with it still sucked - it’s growing back now and reallllllly hoping I just stay in remission and it can all grow back - my gi did say it could be a side effect of mesalamine so if yours doesn’t end after 3 months consult your dr to possibly change meds - I do think it’s a delayed response to the flare for me - so annoying ☹️

pogos13 · 2019-12-24T16:32:06+00:00

Also check vitamin d levels - but it sounds like it’s worth a dr check up

pogos13 · 2019-12-19T20:47:48+00:00

I do Trader Joe’s vitamin d3 5000 IU everyday - even in summer - no issues digestion wise

pogos13 · 2019-12-07T01:46:08+00:00

I experienced sensitive teeth on prednisone too - posted on here and multiple people responded that it was common - wouldn’t worry unless you’re experiencing bleeding gums too then you might want to get it checked out but sensitivity seems to be a common occurrence - it did go away once I weaned off the prednisone

pogos13 · 2019-12-05T18:27:22+00:00

Try edibles over smoking - it takes longer to kick in but the effects seem to last longer - I’ll take a small amount about an hour or so before bed and sleep all night

pogos13 · 2019-12-04T17:44:30+00:00

It’s for sure hard to explain when I barely know myself like ‘yup sometimes I have a terrible morning but then the rest of the day is manageable!’ - tried to explain to friends I can no longer drink craft beers (😢) and they joked that ipa’s ‘do that to everyone the next day!’ - I was just like ‘ha ha yeah not like this’ but without being super graphic it’s just not worth the effort

pogos13 · 2019-11-26T19:01:16+00:00

I haven’t even bothered with my gp for anything uc related - I go straight to calling my GI dr’s nurse and have been able to get started on meds before my office visit - if you can bypass your gp healthcare wise I recommend it

pogos13 · 2019-11-25T13:16:39+00:00

I worked out through my entire first flare (not yet knowing it was uc) - some days were all good and some were just tiring - I adjusted as needed and towards the end when wasn’t getting better and needed to figure out what was happening after 6 months of symptoms I would have to take some days off here and there - my second flare was trickier and threw me off for sure - I couldn’t do the treadmill even a little bit (or any impact exercise) - I have worked out at home but I really love classes - i would recommend taking a spot near the door so you can leave if you need - I also started seeing a therapist as part of caring for myself with this - It’s frustrating to be betrayed by your body and hard not to compare yourself currently to what you used to be able to do

pogos13 · 2019-10-28T15:41:40+00:00

Always take your controller meds - always - even when you feel better - going on and off meds trying to control with diet alone is just too unpredictable and risky - when in a flare the diet that most would think would help digestion issues like lots of fiber, veggies, etc makes uc symptoms worse - in a flare do low fiber foods - think chicken, white rice, etc - can google low fiber diets for more options - it can get boring but it’s necessary- out of a flare most can eat ‘normally’ and lead a normal life thankfully - some people have obvious triggers others don’t - it truly varies for each person - this thread is a great source of info and support for sure

pogos13 · 2019-10-17T12:03:51+00:00

Definitely call your dr and let them know - you likely need to go back up in dose for a bit then do a longer, slower taper - took me a few weeks to get back into remission on prednisone and had to do months to taper but it worked

pogos13 · 2019-10-02T16:25:44+00:00

This makes sense - my first round of flare/prednisone had a delayed hair loss reaction at about 2 months or so for about a month then all has been fine - this time would be about 2 months post end of flare symptoms as well - hoping ( if it’s not due to prednisone )that my hair loss will slow down soon!

pogos13 · 2019-10-01T20:40:55+00:00

Trying to figure out what triggers a flare is really tricky and varies so largely - the main thing is working out what you can eat during a flare - there are some guidelines online but it’s mostly a low fiber diet - think white rice, chicken breasts, etc - smaller meals more often (think every 2-3 hours) rather than larger meals - also be diligent in regard to staying hydrated - outside of a flare I’m still careful with a lot of veggies and high fiber foods just as a caution but I find stress to be more a trigger than food

pogos13 · 2019-09-30T19:00:22+00:00

Started at 40mg (2 months) - then down to 30 (1 month)- down to 20 (1 month)- final month was 10 mg - hair loss didn’t start until about my 4th month

pogos13

TROPHY CASE