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!!!!!!

 

 

 

 

Original Post

HI Dancing girl,

So this is a safe place to vent and air out your stresses and I will respect that fact in my answer...

Firstly, I believe that the shower is a 'false problem'...it may have become a psychological crutch that you require to feel fresh and clean but in fact, you could either buy a bidet or get a toilet seat attachment that would do the job without you having to get totally undressed and into the shower. It would also allow you to freshen-up as often as you like without so much stress. It could even help you not to be late at work.

Secondly, no one really cares about other people's bathroom noises. We think that they do, we even imagine that they are listening closely and commenting on them (and they probably are on a superficial level) but it really does not matter. They make noises too, sometimes more than us. Often times messier than us. I stopped worrying about when I moved to France where they are particularly 'relaxed' about the whole toilet subject...They have toilets in the entrance of the house next to the kitchen or dining room...the perfect place for everyone to hear and eventually smell everything that everyone else does...and really, they giggle but do not care a hoot.

Thirdly, food. 

Well yes, there is nothing that we as pouchers can do about the fact that we have short digestive systems, that we have special digestive needs and cannot always use public facilities (especially people with K pouches and BCIRs) easily.

But that is life. 

As you said, some people need to excuse themselves to take an insulin shot before their meals, others have other problems...if you accept their challenges then you must allow them to accept yours...fair is fair. Remind them if you must...They are busy and do not think about these things like we do.

As for food, we all need to plan, measure and limit our intake. Some of us starve before events (me), others don't need to or do not care. I eat protein meals before events where I am not in control like when traveling long distances or taking planes. Even healthy people with normal digestive systems do...my girlfriends who had babies now dribble...they need extra protection...or have to run fast to avoid peeing themselves...that is life. We laugh about it...and move on.

My sister in law has a very normal digestive system...And she farts like a trucker after 6 cans of beans. Burps too...and does not care. Or apologize.  That is life and it is too short to worry so much about these things.

I get a feeling ( and I could be wrong, I often am...and I do apologize if I am over-stepping here) that you may be suffering from PTSD related to your condition. 

I sense that a lot of situations send you into high-stress and that it is causing you a lot of pain. It is effecting your career and your social life...that is my personal definition of needing to talk it out with someone more experienced...or at least with a close friend. Confiding your fears helps to relieve them. That could help.

PTSD can cause a lot of symptoms including sleeplessness, exhaustion, anxiety, stress, eating dysfunctions and so much more.

You may not realize it but you have found one of the best stress relievers that there is...music...and specifically, dancing...you are self-healing...which is wonderful...just keep it up...the more you dance the better you will feel...

I don't have any real advice, just observations...but I think that with a couple of lifestyle modifications, you will manage your stress much better.

Sharon

 

 

I totally understand u, because I'm a women and we are very self conscience about being fresh and clean and not sounding disgusting in the bathroom.  I am the same way.  I do exactly what u do for events and going out to eat.  I don't even date because I feel who would want to deal with this, I don't even want to.  It is exhusting.  I had UC since 98 and Jpouch in 2013 two years after my husband passed away.  I couldn't return to work and was dx with ptsd.  I am on a antidepressant but now the lowest dose.  I take yoga and practically make all my own food.  Society is all about eating and events with food.  It is tough and it is totally different than most diseases.  Men fart and think it's funny so for them no big deal.  Maybe some women do and we all know it's a fact of life with us all.  But not the way we have it.  I would do great if I didn't have to eat.  LOL

 One thing I don't do is take that many showers.  I do use a sitz bath and warm towels.  I use plenty of creams and take 2 imodium a day plus when needed hyoscyamine. I do take valium when needed. It really is the only thing that calms my bowel down and me. 

One other thing that is the most important to survive this is my faith and church.  I concentrate on helping others and do a lot volunteer work which keeps my mind off of me.  I also realize my way of life is different and I must adjust and do what's best for me not others.  Some days are good and some not so I take as it comes.     Know you always have friends here that know exactly what u are going through.  My closest friends and family don't realize the extend of my day and how much it takes to make it work.  My late mom would say it always could be worse.  So true

Thanks for your reply, TF. Would you want to be in a private chat with one other person who responded to another post I made about discussing better coping tips for those of us who have had J-pouches for awhile (I first said at least ten years, but you have had yours awhile now to know things about it!!!) and are relatively healthy? I know many who come on this site are dealing with lots and lots of medical issues and I think (thankfully) that mine are not medical issues as such, more like... fine tuning things and thinking about and discussing how to live a better life with the pouch!!!  If you also wanted to discuss publicly, I'd like to start yet another topic line but have it more streamlined to attract like minded folks.. if you had an idea of a topic line for that, let me know.I don't want folks who have other types of pouches to give me advice about a J-pouch, that is not helpful, nor do I want people to come on here and tell me generalizations about what they read here.. I am looking for folks who have a j pouch for a while, living pretty comfortably with it but might have a method of this or that in dealing with some aspect of it that could be helpful for me to hear about!! Thanks!!

tf posted:

I totally understand u, because I'm a women and we are very self conscience about being fresh and clean and not sounding disgusting in the bathroom.  I am the same way.  I do exactly what u do for events and going out to eat.  I don't even date because I feel who would want to deal with this, I don't even want to.  It is exhusting.  I had UC since 98 and Jpouch in 2013 two years after my husband passed away.  I couldn't return to work and was dx with ptsd.  I am on a antidepressant but now the lowest dose.  I take yoga and practically make all my own food.  Society is all about eating and events with food.  It is tough and it is totally different than most diseases.  Men fart and think it's funny so for them no big deal.  Maybe some women do and we all know it's a fact of life with us all.  But not the way we have it.  I would do great if I didn't have to eat.  LOL

 One thing I don't do is take that many showers.  I do use a sitz bath and warm towels.  I use plenty of creams and take 2 imodium a day plus when needed hyoscyamine. I do take valium when needed. It really is the only thing that calms my bowel down and me. 

One other thing that is the most important to survive this is my faith and church.  I concentrate on helping others and do a lot volunteer work which keeps my mind off of me.  I also realize my way of life is different and I must adjust and do what's best for me not others.  Some days are good and some not so I take as it comes.     Know you always have friends here that know exactly what u are going through.  My closest friends and family don't realize the extend of my day and how much it takes to make it work.  My late mom would say it always could be worse.  So true

Thanks for responding. Yeah, I need to make more of an effort to clean my tub and sit in it!! Even if I didn't have a J-pouch, I still would take a lot of showers cause I go dancing all the time and want to shower before and after dancing.. and I have frizzy curly hair that always needs to be wet down a bit and have products and yeah, I can do that without a shower, but it's easier just to get in the shower and get my whole head wet, and also, for me.. warm water calms me down and helps me get to sleep!! So my shower gets dirty.. well, the tub gets dirty.. Also, it is old and some of it is peeling and it catches the dirt easy... but yes, sitting in warm water is a good idea.

TELL ME MORE ABOUT HOW YOU USE THE WARM TOWELS and how you get them warm! Thanks.


Glad the Valium works for you. I was sick for so many years and got involved in a lot of pills and eventually had to deal with problems of dependence on them so for me, I could never ever take anything from the Benzo family again. It would be a very bad trigger...  I do have a medical marijuana license and have been experimenting with various products from the legal dispensaries and feel like the CDB/THC topical creams are helpful.

 

I will come back and comment more on what you said but have to get moving, LOL, take a shower and run and do some errands. Thanks so much for your positive reply!

My bidet has been a godsend!  I have a simple TOTO Washlet.  I used to carry a small water bottle when I was away from home so I could spray my bottom after using the toilet.  Haven't felt the need to do that for many years.  I got my J-pouch in 2002.  I rarely even think about having a "special" plumbing system!  Best wishes!  

Try a sitz basin. You can get one from Amazon or major drug store chain for under $20. It's a plastic basin that you put in your toilet and use once or twice a day if needed (seat up, so the basin tucks into the toilet snugly). And remove it when someone needs the toilet.  Fill the basin with very (very) warm, but not hot, water. Lower your bum into the basin. You'll notice that the water you displace will flow safely out of the little hole in the back of the basin. Sit in the sitz basin, now on top of your toilet, until the water cools. Refill with fresh warm water, if necessary. My takedown nurse taught me this. She said the very warm water will encourage blood circulation to that small bum area and will heal fissures, cuts, Bum Burn, raw, excoriated skin. The basin is an easier way to soothe that hidden area than filling a tub.

Also try a plastic bidet bottle that you carry in your purse and fill it just before you enter a stall. Amazon or health care equipment store for around $15. These two systems will keep you clean, fresh, soothed and heal any raw skin. Good luck.

I agree with the basin, that's what I meant when I said I do a sitz bath.  As far as warm towels.  I just use my wash cloths under warm water.  Also, I go to bed with a bed buddy a warmer which goes under my bottom also another on my favorite lounge chair.  I heat in microwave as needed.   It really helps with the soreness and pain.  My problem has and will always be output which makes me sore and in pain.

My UC was severe and I needed the J pouch which takedown was 2  2013.      

My issue is... I can't put that basin in the toilet without cleaning the toilet. My boyfriend leaves things a mess and it's not worth talking about.> i just clean up after him because I also make a mess from all the gas and stuff. It would take forever to always clean the toilet in order to put the bidet in.. and also, we only have one bathroom and he is of the age than when he needs to pee, he needs to pee and I have learned to quickly get out of the bathroom and let him pee, cause I can sit back down and finish what I need to do.. I cannot see how I would be able to get up quickly if there's a basin of water I also have to deal with.

 

And I don't want to carry a purse with a little bottle of water when I go out.. I have enough to deal with.. contact lenses and fluids, glasses in case I need to take out the contacts, bottles of water for dehydration, headache medicine in case I get a headache.. oh my list is so long.. I can't possible add one more thing.... I am out and about sooo much, the last thing I need is another thing to carry and clean and take in a stall with me!!!

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