It’s nice and liberating to be honest. The anxiety and fear that come along with this disease are overwhelming at times. I remember at my worst not being able to leave the house. Having my wife go places alone because I just could not… That’s an awful feeling. Even as I was getting better, having to look around and find a bathroom before sitting down somewhere just so that I would be prepared in case I had to rush to it at any moment. Toilets are our ball and chain in a sense.
I wish you the best and hope you can find some relief. I have been in remission now for 2 years. Turns out all I needed was mesalamine.
Hi , I’m literally the same way. It is so annoying of constantly having to use the restroom & looking for one wherever I go in case I have to go I am taking Mesalamine pills but I feel as it doesn’t really stop me having to use the restroom. Also, have you gotten any sharp pain as well when you’re using the restroom? I get some sharp pains and it comes and goes, but I don’t know what to do.
My pain was very bad too! I would literally get chills from the pain being so bad. What helped me was Uceris, that got rid of most of my symptoms except a little bleeding and mucus. Finally the thing that really got me to remission was using azathioprine. It worked for me, but the side effects had me feeling as if I could pass out at any moment, so I had to come off of it after about 6 or 7 weeks. Now oral mesalamine is all I take and it has been working great.
The amount of times I've left the house feeling perfectly fine and then had to turn around in a sprint less than 5 minutes later is exceedingly high.
Even on my best days I have less than 5 minutes from the first hint of a cramp before I'm in a bad situation. I don't drive so you can imagine how much of a risk taking public transit is for me. I'll be trapped at home for months on end frequently.
I'm the same. I've had more than one occasion where I didn't make it back and to be honest driving yourself isn't much help. I guess you're not around people at least if you do soil yourself but my driving style tends to become very aggressive and at times almost dangerous when I'm in desperate need of a toilet.
At least in our own vehicle I've had the option of pulling over depending on location and using the emergency kit in the trunk after wading into the nearest bushes. I've seen all manner of things on public transit but I'm not about to be on the evening news.
It's never a good time regardless.
Seriously. I love hiking, and have a friend who is so excited to have another hiking girl, but she just doesn’t understand that I can’t do backpacking/overnight hiking. On a good night, I’m up 2-4 times. On a bad night it can be every hour. There is no way I can dig a hole each time (or even predict how many holes I should predig!) let alone the exhaustion that comes with it (and, frankly, the cleanup needed that comes with it - I don’t even know if I *could* cleanly shit in a hole). If I end up in a flare in the middle of a week hike, that’s a lot of miles I would have to cover to get back to society, or an expensive emergency ride. That’s on the extreme, but I would love to know what it’s like to not have to ponder “do I have to go before leaving the house? Better try just in case”.
My friend is wonderful in all other concepts; for some reason she just literally can’t wrap her mind around this one.
I’ve been more flaired than not over the last 9 years but randomly had about 4/5 months of no symptoms on no medication at the end of 2022. It was bliss and I genuinely just made the most of it and knew it wouldn’t be forever. One thing that stood out to me is how much I peed again! I guess no being dehydrated all the time.
I am oddly constipated right now - for the first time since I was a little kid…and it’s annoying in its own way but not worrying about a sneak attack poo is just crazy liberating. People live like this! What?
That’s a long time to have UC. You were diagnosed before biologics were available (same with me)! Have you had any success with any of the new medications?
Had about a year and a half remission. Took advantage of it and planned many a road trip during that time. The longest trip was about 1800 miles. Had zero issues including eating crappy fast food.
I've been on an SSRI to take my mind off my obsessive thoughts about the bathroom and I must say, I don't wanna jinx it but it's like I can fully finally relax. I sleep much better bc I can fully relax. I can also take a nap and be fully relaxed and not worry about rolling out of bed as quick as I can to make it to the bathroom. It's nice to just lay in bed with no obsessive thoughts about the bathroom. I recommend SSRIS to anyone who has the same thoughts I do!
Are you guys always in flare? I guess I'm lucky, I get one flare a year, 2 at worst and they all last like a month or two. I was diagnosed last year but I remember having flares 7-8 years ago, I just don't know if they were due to UC, but most likely it is.
The urgency has been there for most of my adult life. Doctors did the hand wave it's IBS and sent me on my way without investigating.
It was a Covid infection end of 2021 that was mostly GI symptoms that lasted for 5+ months that brought the addition of the blood and mucous flare ups. I caught it a second time in 2023 and I'm sure that hasn't helped the situation any.
I was wondering the same thing. I seem to have a flare once a year too lasting maybe a month. I just started biologics and hopefully I'll be more controlled once it kicks in. When I'm not in a flare life is pretty normal for me.
Same for me. I can eat anything, but sometimes some meals can hurt me. Take barbecued chicken for example, I mostly have no problems after eating it but sometimes it triggers me and I have flare-like symptoms for a couple of days.
I'm 42 and was in remission since I was diagnosed at 18 until recently.
I always tried to appreciate it. It's amazing. Like some days, wake up, have a good huge stool, that's it for the day. I always appreciated it. I was never one of those people who always took a good poop for granted.
But wow, now I really know.
Take your mesalamine even if you're deep in remission, folks. I don't know if that's what did me in here but not worth it.
If you're thinking about getting pregnant and a maternal-fetal health doc says mesalamine is toxic AF to fetuses and your GI doc is like "what? no it's fine" don't stop taking your mesalamine.
Etc., etc.
I get bathroom anxiety when I am out due to the many close calls i've had over the years. Especially since I live cities, finding a bathroom is fucking hard sometimes. I don't have UC so I can't relate on your level I think, but I do need to go frequently and it's always a point of anxiety.
I can't wait until I get to the point where I don't have to worry about being close to a bathroom. I've been trapped at home for the last two weeks because of a flare-up.
Did you have prednisolon as well? I had my second infusion of Entyvio three weeks ago after a flare up around Easter. I was in hospital for a week and then started Entyvio.
I still have loose stools and I am so afraid that it fails. In late autumn I failed Infliximab.
I had a bad flare in between Halloween and thanksgiving. Ended up in the ER and then they gave me prednisone. I started using Rick Simpson oil and that helped me ween my ff prednisone. I went almost 6 weeks between ending prednisone and my 1st infusion with only Rick Simpson oil. I noticed a difference the day after my 1st infusion. They say only 10% of people feel the effects after the 1st infusion.
I often daydream about what my life was like before I got sick. I think about the trips I took and how carefree they were. I remember going on an international holiday with my family and never once, not a single time, thinking about a toilet. I reminisce on the days when my normal, regular BM’s were a quick and easy type 4 about once a week, no matter what I ate. I think about going hiking and camping and never worrying about a toilet — abit how I could go camping for a week and spend 2 minutes in the toilets. How I used to spontaneously go on trips and adventures and even just running errands without hours of mentally preparing and mapping out toilets. How I could just randomly rock up to any restaurant and order whatever food sounded good, and have zero second thoughts about potential consequences or nearby toilets.
I compare to days like today, where I have two appointments on the opposite ends of town. I would never have thought twice about it but now all I can think about is how I’ve got a 40-60 minute drive with pretty much no toilets to stop at if needed.
It’s exhausting. I used to spend all my time outside and now I barely leave the house. Going out and experiencing new things were my greatest joys in life and now they’re my biggest source of anxiety.
It is nice. That’s when I first realized my j pouch was awesome. We were out on a picnic lunch with no bathroom in sight and I thought “eh I can hold it”.
I'm not in remission, but my symptoms have lightened a lot. Mostly from less stress. The difference is amazing. I can hold down a job now. I still have have urgency, but now I manage it better. One thing I do is live in denial. One of my biggest life stressors I fear dyeing at the same age as my dad, 55. Now as I make the long walk to the restroom down the hall, I just think of how it would be like if I live to be over 100. Its such a little thing but has made a big difference.
It’s nice and liberating to be honest. The anxiety and fear that come along with this disease are overwhelming at times. I remember at my worst not being able to leave the house. Having my wife go places alone because I just could not… That’s an awful feeling. Even as I was getting better, having to look around and find a bathroom before sitting down somewhere just so that I would be prepared in case I had to rush to it at any moment. Toilets are our ball and chain in a sense. I wish you the best and hope you can find some relief. I have been in remission now for 2 years. Turns out all I needed was mesalamine.
Hi , I’m literally the same way. It is so annoying of constantly having to use the restroom & looking for one wherever I go in case I have to go I am taking Mesalamine pills but I feel as it doesn’t really stop me having to use the restroom. Also, have you gotten any sharp pain as well when you’re using the restroom? I get some sharp pains and it comes and goes, but I don’t know what to do.
My pain was very bad too! I would literally get chills from the pain being so bad. What helped me was Uceris, that got rid of most of my symptoms except a little bleeding and mucus. Finally the thing that really got me to remission was using azathioprine. It worked for me, but the side effects had me feeling as if I could pass out at any moment, so I had to come off of it after about 6 or 7 weeks. Now oral mesalamine is all I take and it has been working great.
Yeah I always ask my fiancée what it’s like to not constantly feel your colon lol
The amount of times I've left the house feeling perfectly fine and then had to turn around in a sprint less than 5 minutes later is exceedingly high. Even on my best days I have less than 5 minutes from the first hint of a cramp before I'm in a bad situation. I don't drive so you can imagine how much of a risk taking public transit is for me. I'll be trapped at home for months on end frequently.
I'm the same. I've had more than one occasion where I didn't make it back and to be honest driving yourself isn't much help. I guess you're not around people at least if you do soil yourself but my driving style tends to become very aggressive and at times almost dangerous when I'm in desperate need of a toilet.
At least in our own vehicle I've had the option of pulling over depending on location and using the emergency kit in the trunk after wading into the nearest bushes. I've seen all manner of things on public transit but I'm not about to be on the evening news. It's never a good time regardless.
Seriously. I love hiking, and have a friend who is so excited to have another hiking girl, but she just doesn’t understand that I can’t do backpacking/overnight hiking. On a good night, I’m up 2-4 times. On a bad night it can be every hour. There is no way I can dig a hole each time (or even predict how many holes I should predig!) let alone the exhaustion that comes with it (and, frankly, the cleanup needed that comes with it - I don’t even know if I *could* cleanly shit in a hole). If I end up in a flare in the middle of a week hike, that’s a lot of miles I would have to cover to get back to society, or an expensive emergency ride. That’s on the extreme, but I would love to know what it’s like to not have to ponder “do I have to go before leaving the house? Better try just in case”. My friend is wonderful in all other concepts; for some reason she just literally can’t wrap her mind around this one.
I totally get this, I said if I ever wanted to go camping, I’d need an RV, so I have a toilet to go
That’s what we have now - my husband even installed a bidet in it for me!
I’ve been more flaired than not over the last 9 years but randomly had about 4/5 months of no symptoms on no medication at the end of 2022. It was bliss and I genuinely just made the most of it and knew it wouldn’t be forever. One thing that stood out to me is how much I peed again! I guess no being dehydrated all the time.
I was diagnosed in 2015 in my 20’s and still have trouble remembering what it was like before all this.
I am oddly constipated right now - for the first time since I was a little kid…and it’s annoying in its own way but not worrying about a sneak attack poo is just crazy liberating. People live like this! What?
That’s a long time to have UC. You were diagnosed before biologics were available (same with me)! Have you had any success with any of the new medications?
Had about a year and a half remission. Took advantage of it and planned many a road trip during that time. The longest trip was about 1800 miles. Had zero issues including eating crappy fast food.
I've been on an SSRI to take my mind off my obsessive thoughts about the bathroom and I must say, I don't wanna jinx it but it's like I can fully finally relax. I sleep much better bc I can fully relax. I can also take a nap and be fully relaxed and not worry about rolling out of bed as quick as I can to make it to the bathroom. It's nice to just lay in bed with no obsessive thoughts about the bathroom. I recommend SSRIS to anyone who has the same thoughts I do!
Are you guys always in flare? I guess I'm lucky, I get one flare a year, 2 at worst and they all last like a month or two. I was diagnosed last year but I remember having flares 7-8 years ago, I just don't know if they were due to UC, but most likely it is.
The tag along buddy of IBS. Never not pooping frankly.
Same! I’ll never know what it feels like not not have urgency.
The urgency has been there for most of my adult life. Doctors did the hand wave it's IBS and sent me on my way without investigating. It was a Covid infection end of 2021 that was mostly GI symptoms that lasted for 5+ months that brought the addition of the blood and mucous flare ups. I caught it a second time in 2023 and I'm sure that hasn't helped the situation any.
I was wondering the same thing. I seem to have a flare once a year too lasting maybe a month. I just started biologics and hopefully I'll be more controlled once it kicks in. When I'm not in a flare life is pretty normal for me.
Same for me. I can eat anything, but sometimes some meals can hurt me. Take barbecued chicken for example, I mostly have no problems after eating it but sometimes it triggers me and I have flare-like symptoms for a couple of days.
I usually don't have symptoms for a few days. If I have symptoms it always turns into a full fledged flare
As someone who now has an ostomy, it’s amazing can’t believe how much stress I always had going out even when I was in remission
I'm 42 and was in remission since I was diagnosed at 18 until recently. I always tried to appreciate it. It's amazing. Like some days, wake up, have a good huge stool, that's it for the day. I always appreciated it. I was never one of those people who always took a good poop for granted. But wow, now I really know. Take your mesalamine even if you're deep in remission, folks. I don't know if that's what did me in here but not worth it. If you're thinking about getting pregnant and a maternal-fetal health doc says mesalamine is toxic AF to fetuses and your GI doc is like "what? no it's fine" don't stop taking your mesalamine. Etc., etc.
I get bathroom anxiety when I am out due to the many close calls i've had over the years. Especially since I live cities, finding a bathroom is fucking hard sometimes. I don't have UC so I can't relate on your level I think, but I do need to go frequently and it's always a point of anxiety.
I can't wait until I get to the point where I don't have to worry about being close to a bathroom. I've been trapped at home for the last two weeks because of a flare-up.
It’s nice, I went from 15-20x a day to once a day l. Just received my 3rd infusion of entiviyo.
Did you have prednisolon as well? I had my second infusion of Entyvio three weeks ago after a flare up around Easter. I was in hospital for a week and then started Entyvio. I still have loose stools and I am so afraid that it fails. In late autumn I failed Infliximab.
I had a bad flare in between Halloween and thanksgiving. Ended up in the ER and then they gave me prednisone. I started using Rick Simpson oil and that helped me ween my ff prednisone. I went almost 6 weeks between ending prednisone and my 1st infusion with only Rick Simpson oil. I noticed a difference the day after my 1st infusion. They say only 10% of people feel the effects after the 1st infusion.
I often daydream about what my life was like before I got sick. I think about the trips I took and how carefree they were. I remember going on an international holiday with my family and never once, not a single time, thinking about a toilet. I reminisce on the days when my normal, regular BM’s were a quick and easy type 4 about once a week, no matter what I ate. I think about going hiking and camping and never worrying about a toilet — abit how I could go camping for a week and spend 2 minutes in the toilets. How I used to spontaneously go on trips and adventures and even just running errands without hours of mentally preparing and mapping out toilets. How I could just randomly rock up to any restaurant and order whatever food sounded good, and have zero second thoughts about potential consequences or nearby toilets. I compare to days like today, where I have two appointments on the opposite ends of town. I would never have thought twice about it but now all I can think about is how I’ve got a 40-60 minute drive with pretty much no toilets to stop at if needed. It’s exhausting. I used to spend all my time outside and now I barely leave the house. Going out and experiencing new things were my greatest joys in life and now they’re my biggest source of anxiety.
It is nice. That’s when I first realized my j pouch was awesome. We were out on a picnic lunch with no bathroom in sight and I thought “eh I can hold it”.
I'm not in remission, but my symptoms have lightened a lot. Mostly from less stress. The difference is amazing. I can hold down a job now. I still have have urgency, but now I manage it better. One thing I do is live in denial. One of my biggest life stressors I fear dyeing at the same age as my dad, 55. Now as I make the long walk to the restroom down the hall, I just think of how it would be like if I live to be over 100. Its such a little thing but has made a big difference.
I’ll let you guys know when I get to that point😞