I have had my j-pouch for about 14 years. In general, I am very happy with it as my life was just horrible with Ulcerative Colitis. But I find myself just exhausted sometimes.. and overwhelmed with all the things I need to attend to with it.
I'm going to list the things that exhaust me in an organized fashion and hope that maybe some of you dealing with any of these things may have some better coping tips for me!! If there are any. Perhaps, it just.. is.. what it is.
#1. I was always late to work. Seemed like I would go to the bathroom in the morning, take a shower but then need to poop again and then would just feel all itchy and scratchy all day long at work. So I started taking a shower much closer to leaving for work, but I find I am still late! I even got an ADA permission so I can be late but I have to write to my boss if I am going to be later than 15 minutes and If I am 16 minutes late, I have to claim a full half hour PLUS he can write me up. I even switched my hours to come into work till 10 AM, thinking the extra time in the morning would help me with being late. (I am also late to some social events for the same reason, but no one is threatening to fire me!) If I rush to work, then get there and have to be in the bathroom for awhile, I get written up for not being at my desk!!!! Plus, you know how restrooms are.. no privacy, you can't really clean yourself up that well so who wants to get to work and then have a major major poop and have to have that on your skin for over 8 hours....
#2. I am just always exhausted. I think it is from straining, taking many showers a day/night (More on that in a minute), not getting enough hours of UNINTERRUPTED SLEEP, always rushing to get to work and feeling stressed four days a week in regards to this (I just changed my schedule to work 30 hours a week so while I am getting paid less, I am at least only having to rush like that FOUR days a week, not five.) I am trying hard, like today.. to spend that one extra day of 8 hours.. sleeping in, reading a book in bed with my coffee, not doing any chores or errands.. just chilling and when I can manage to do that, that really helps me with the exhaustion.. but it still doesn't seem like enough. I often come home from work, just wiped out and I force myself to do a few errands so I can then spend a Saturday or Sunday doing the chilling as well... but I have as of late, blown off so many fun things after work, I am getting concerned. I just can't seem to get enough REM or rest as of late. And it's bad to blow off my favorite thing, which also serves as exercise and social and relaxation for me.. dancing!!! I love to go out dancing. It's such a stress reliever and so much more but as of late, I have skipped many a dance and that is just unacceptable and I don't know what to do!! (believe me, I am trying to also work out retiring.. that would totally solve my issue... but right now, I can't do that... MAYBE reduce my schedule to 50 % but I can't do that right this minute either as I am trying to first focus on balancing my budget with working 75%!!!)
#3. I get a lot of BUTT IRRITATION and pain unless I take frequent showers and then put on my magic BUTT CREAM that an apothecary with does compounding makes. I have tried wipes and soap and a washcloth, but wipes leave a film (all kinds.. I have tried all kinds) and you also have to have SOFT papertowels that don't shred to wipe off the moisture of the wipes or I get a rash!!! and it's also very hard to fully get myself clean in a little stall when I am out and about and I can't take in washclothes and soap and a towel into a stall every time I go to the bathroom so I take a lot of showers.. even at home, just using a washcloth and soap and then a clean towel.. well.. then I need to do more laundry, which is in the basement cause I live in a condo and that just creates more work etc. etc. PLUS, the HOT WATER of the shower on my anus is very very soothing... and then I put the magic BUTT CREAM on the CLEAN anus and it really heals me!! It has Bentonite in it. I get it as a perscription with a co-pay and I am lucky there is a place that makes it very close to where I live and that my insurance covers it (otherwise, it would cost $50 instead of $10.) Sometimes certain foods burn my butt, sometimes those same foods do not. BUT these frequent showers take time and energy!!! and it's also adding to my exhaustion.
4. I travel a lot going to dance weekends. Some are at places with bunk beds or beds but with 8 or 10 people in the room and shared bathrooms. That is the most economical to do but I NEVER EVER do that.. I get a hotel room/Air B and B that sometimes is not even that close to the dance but it's the only place to stay. I wind up spending more money doing this but I really don't feel I have a choice!! Sometimes, like many of you know.. it's very noisy when I go to the bathroom and it's bad enough doing that in a public place but to sleep in a place with lots of people and the bathroom in the area where that many people can hear me.. and hear me all night long and then to have to dance with these people?? NO NO NO. As it is, I have to stand in long lines during the dance breaks and know that I will take longer than most people so I try and SKIP the dance or two BEFORE a break and go to the bathroom BEFORE the crowd!!!! or wait till after the break and miss the first dance and take care of business. To me, it's exhausting and stressful to ALWAYS HAVE TO THINK OF THIS.. but it's a way of life. When I buy tickets to the plays and opera, I always ask for an aisle seat and thank the good lord that since I dance, I am fast fast fast at sprinting up the aisle, up any steps to be as close to first or first in line at the bathroom to get an end stall and then just take my time. But it seems I'm always figuring out where the bathroom is at EVERY PLACE I GO TO.. which I guess I did when I had Ulcerative Colitis as well..and my needs are not as urgent (Thank the lord) but I still have to assess each situation... and plan accordingly... it the bathroom one stall and am I going to create a long time if I use that... etc. Sometimes, I might even get into my car and go use a bathroom somewhere else.. I know this is crazy but true!! or walk further to go use a bathroom somewhere .. that has a bunch of stalls... just recently was out at a coffee shop with a friend and I told her I would be back, that I had an urgent errand but to wait for me and I walked two blocks down the street to the library where I knew would have multiple stalls. But not all libraries have that. I recently met my mother at another library to then take her somewhere but that library only had a single toilet and I had to go and I had to wait and wait and then backed up the line forever!!!
And how about when people keep knocking on the door and you are in there and you know you can't hurry?? and they keep knocking and knocking!!! AHHHH. So stressful and then you finally come out and there's a line of twenty people???
HELP!!!
5. EATING. So, I know my body and know that after a certain amount of time after eating, I will need to use the bathroom. So when I know I am going out I have to BACKTIME when I am going to eat. This usually does NOT coincide with other people's schedules. So that can cause stress. PLUS, I CAN"T go out to eat BEFORE an event. So many people I know want to go out to eat and then attend a concert, a play, a dance. I CAN"T DO THAT. I can eat a few HOURS before an event.. but then I need to go to the bathroom and take a shower!!!! If I eat very much before an event, I am going to have to use the bathroom for awhile DURING THE EVENT and I DON"T WANT TO MISS parts of a movie or a play or opera etc. This gets really tiring to have to explain to someone.. No.. I will just MEET you at the movie or the play or the opera or the dance and HEY, if you want to go out AFTERWARDS, I would be up for that!!! My cousin has diabetes and must eat before going to a show etc. and I respect what she needs to do for her medical needs but she always forgets about my situation and is constantly suggesting we go out to eat before an activity.
and PT 2 of #5.. I don't really LOVE going out to eat anyhow!!! Of course, there are a few trusted places I know and eat at.. and I can always eat a pizza!!! but I'm susceptible and always have been to the slightest bit of food spoilage or unchanged oils like at Chinese Food restaurants or old food or food that has not been stored properly etc. etc. that I'm sooo much better off with eating at home (fortunately for me, my boyfriend loves to cook and shop for the food he cooks and he is a gourmet chef in that department!!) or going to the grocery and going to the deli and getting fresh cheese or meats sliced off, grabbing some bread etc. , a banana and peanut butter, etc etc, When I travel, I have tons and tons of things in my car that I have carefully shopped for and a small cooler with yogurt and other stuff and bring a hot pot to make my own oatmeal etc. etc. So many hotels now a days have mini fridges, free ice, a microwave.. that I can research where the grocery stores are, Health food stores are, etc. etc. and be fine! And yes, many health food stores have soup on hand or other things that one can buy that are premade and even a microwave, plates and tables and chairs, you can eat there and rarely have an issue... But gosh, it gets so tiring to have to explain all this to people that want to go out to eat in groups of people.. or one on one... etc. etc.
6. Okay, I will be back. I have more to write but am looking at the clock and need to hop in the shower to clean myself off and use hot water to soothe my butt and put on the butt cream and then get dressed to go out dancing which always makes me feel better. But again, I have lots of things I deal with due to the J pouch. And I am sure you do as well and I would welcome and value any coping suggestions to make my life with it less stressful and less tiring.
THANK YOU!!!!!!