Working/Career with UC

Hi all,

I am wondering how have you handled work during a (very long) flare? In previous years I've had two shorter flares controlled with meds within a month's time. I do recall having to run back to the bathroom often but not really having a problem getting to work (half hour drive).

Currently I'm having my worst flare yet, 6 months and going with nothing helping yet, and although I've been working the whole time I am struggling since my job requires a lot of travel and it's in a very isolated area (maybe 1-2 gas stations or rest stops between locations...though of course sometimes it doesn't matter how close one is, can't get there fast enough even right outside the restroom door). My drive to/from work is about 40 min/miles but on a regular day I would be driving 100-300 if I could make it.

I've had a lot of close calls and panic attacks when that "feeling" has hit me on the road, but in the last month I've had at least 5 actual messy accidents, mostly by myself and no one has known, 3 of them literally just outside the darn door or at the toilet. I wear a pad or depends and bring a change of clothes, wipes, TP, etc, I've been carrying those around for months but haven't really needed them until now. Every time it is just humiliating even if I'm the only one who knows about it -- getting to feel like I just cannot live like this and it is going to be affecting changes at my job quite soon.

How do you deal with it? Can you work at all during a major, prolonged flare? I know others have been in them for years, I can't even imagine it...feeling fortunate I've mostly been in remission during my decade with this, but I don't know what to do anymore. Also, I moved cross-country for my dream job and this flare came up just a couple months after I moved (and no I wasn't stressing, that doesn't seem to cue flares for me)...feeling like I'm being punished for following my dream and living life the way I want to!!

Does the Imodium stop urgency short term? A client asked me if I used it but it was never recommended...I'll check with doc tomorrow.

Ugh that's terrible for that long! it's not too bad when I'm at the office, as long as no one else is in there since it is a one person deal. too bad teleportation doesn't exist to get to work easily!

have you had any changes on the Remicade? Looks like you started it around the same time I did, I've had all the loading doses but very minimal results for a few days at a time after the second and third. It's been worsening the last week. not sure if I should bother staying on it for the next maintenance dose.

I wouldn't take Imodium if you're stools are formed. I tried it when I was at my worst having diarrhea constantly but, even though it helped a lot, I felt constipated all the time like I had to go. I hated that feeling more than just getting it over with and having a couple of hours of break time in between BM's.

The remi has been working wonders for me (formed stools, reduced urgency, etc). Started feeling a lot better after the 3rd loading dose. My GI is going to do scope soon and see what my healing progress is. The million dollar question is am I well enough to finally get off the last 12.5mgs of pred? As I'm pred-dependent at this point.

Hi MissShell,
I was reading your post thinking that was me a few months ago. Honestly ..same position, unfortunately for me for years he only drug that was working was pred, I was on it for 5+yrs..lucky that no major damage done during this.. Anyways, my point?..you should start to consider surgery.

I believe I tried all drugs (as you hav also).. Without true remission and eventually without choice surgery may well happen anyway, do it while your young and healthy..

Whatever your decisions I wish you the best!!

Marty

If your stools are formed and you have urgency, that's due to rectal inflammation and Imodium isn't going to be very effective. It will also increase your risk of toxic megacolon or even bowel perf -- it isn't worth it, in my opinion. Urgency associated with formed stools would be much better treated by using rectal meds.

I worked as long as I could, and then I worked from home until I was hospitalized. I was lucky that I was able to do a lot of my work remotely (even taking conference calls while sitting on the toilet... luckily I was very good at muting the phone when necessary). Eventually I had to go on disability and take a medical leave in order to have surgery. Now that that's all done I'm back at work and in the office full time.

Thanks all! well the imodium seemed to get me through yesterday afternoon at work and then today with a 12 hour day 2/3 of it on the road. Started wearing off toward the tail end. It doesn't seem to make my stools more formed but just keeps me from having to go for a good period of time. I took the max today because I was really worried. I still stopped on the road constantly with my clients, since I always kind of felt like I had to or could go but it was always only a little teeny bit. those of you who have used it, do you do so every day? I don't really want to because I want to see how the disease is progressing on its own in responding to medication. Last night it seemed to wear off and then I was up all night going, which was okay since I didn't want to get backed up. I'm not going to take it tomorrow and not sure if I will use it every work day, but at least for the days when I have to be on the road for a long time.

I am definitely seriously considering the surgery route. I saw my doctor yesterday and he is having me start up prednisone again and take my 4th Remicade in a month and see if the Pred helps push it through finally. If not working on approval for Cimzia to see if that will work and he also is getting me a referral to a surgeon, unfortunately for me I have to go about 3 hours away for that since I'm in isolated area. But he said it was a good time to start thinking about it since the meds did not seem to be working, and I'm very glad he said that because the first time I met him two months ago he did not seem to think I was a candidate for it and I was concerned about what I would do after med failure if that does occur. not sure how much hope to hold out for the Cimzia when the other two did not work and I don't really think I will enjoy injecting myself but oh well worth a try I guess.

Liz, I checked out your blog a few months ago. Thanks for posting all that. Everytime I read the medical description of surgeries on CCFA I always freak out about it although it seems like a good solution. I remember worrying about it a few years ago during a flare that now seems completely mild, and just a few months ago as well knowing that it seems like something I would have to do eventually. Your posts make it seem tolerable and doable and humanized, and I would definitely refer to them for tips if I get it done.

I've been having a similarly awful flare the past couple of months. I work in a engineering setting which is mostly in an office/lab setting but even my 30 minute commute has resulted in accidents or me violently pooping on the side of the road. The urgency is absolutely awful. Over the past week or so it's start to become more cyclical. Usually I'm okay during the day as long as I eat (stomach enzymes seems to make it more active) but toward the evening and night when I'm more relaxed it seems to act up and I'm in the bathroom every 40-60minutes throughout the whole night.

My doctor has advised me against the Imodium but I do take it every few days just to get some sleep for the most part. But I do feel the buildup throughout the day and when it finally does let go it's not fun. Again, every couple of days for me. I plan on experimenting with pepto over the next few days to see if that's a little lighter than the Imodium.

I've tried every type of drug except humira so far (not including simponi either) and plan to start my loading does Monday. At the same time I'm going through the surgery process. When I'm at a complete loss of control and can't sleep and nothing else seems to work, that's when I know it's time to cut my losses and move on.

The disease has affected my work but luckily my boss is very understanding. I certainly think you should at least explore surgical options via a consultation. Just so you have the option readily available. Good luck bud!

hey shelly, welcome to the butt house

I would assume that i'm not the only one to have done a little off-unloading, and as i'm looking around doing my thing, what do I notice but evidence of a previous DangIgottaGoNow dumper - makes me feel slightly better about my situation, even as something's poking me in the ass !