7 Rheumatoid Arthritis Bathroom Complications
Rheumatoid arthritis bathroom problems?
That’s right. Bathroom. Not a big fan of potty humor. But if you live with active rheumatoid arthritis bathroom visits can create a minefield of problems.
As the bathroom became more and more difficult for me, I wondered whether I’m the only one. Today, I’m being bold to ask. Do you have a hard time in the bathroom? Or other place where no one would fathom how challenging it is for you?
Here we go.
7 reasons going to the bathroom is difficult with rheumatoid arthritis / rheumatoid disease – and what we can do
1. Knees – and ankles – hey that’s 4 reasons right there! Sitting on a short toilet demands my joints bend in a way they commonly refuse. A toilet is not like a sofa where you can just let yourself “fall” down and then adjust. You need to lower yourself more carefully onto a toilet seat so you don’t fall in! Taller toilets make it easier, so in public bathrooms, use the handicapped stall. And if you ever remodel at home, get taller toilets. Or install a handle bar on the wall. There are also toilet seat risers to raise the seat.
2. Tearing toilet paper off the roll. Who would’ve imagined this could get hard. You have to reach it. You have to grasp it. Then tear it. Too hard. It helps some if you have the roll closer, so you can tear at a closer range. Maybe you can install a closer roll holder or buy a free standing one.
3. Skip this one if you’re too sensitive for brutal honesty. If I can’t properly move my shoulder, elbow, wrist or fingers to do many other things, it’s no better when I try to reach to use that toilet paper. I know there are gadgets to help hold toilet paper with a longer reach, but they do require gripping with a hand, so you have to be sure you can hold them.
4. It’s so hard to pull up my pants. Even pajamas with soft elastic. I’m not sure how this can be helped. I’ve been known to wear a t-shirt dress so I only have to pull up panties. That can be done with the back of hands (inside) to avoid having to grasp.
5. Ok this one is the cliché people supposedly expect. But I sometimes want to ask people who minimize my RA / RD, “What’s the longest time it ever took you to button your pants?” There are buttoning hook helpers, but again, it would depend on how well you can hold the gadget. And there’s elastic waistbands.
6. Flushing. If it’s a lever type, it has to be pushed down. Again I want to ask some people, “How many times do you have to try before you can flush?” If they can always flush the first time, no wonder they don’t get it. I’ve learned to press down with my palm not my fingers, sometimes doubling up, two-handed. There are floor button flushers, but that would be a pretty major renovation.
7. Washing hands. Always wash up, right? When hands or wrists are really inflamed, they do not want to be touched or manipulated in any way. I take the not-as-bad hand and gently clean the worse hand. That helps a little unless you have days when both hands are horrible – I hope not too often.
Does going to the bathroom ever get difficult for you?
It’s kind of a grim feeling when you’re in there all alone and struggling to do what’s required. Do you have any helpful rheumatoid arthritis bathroom suggestions to share?
NOTE: There are 14 days until Christmas! Stay tuned for the much requested RA Warrior gift guide for people with rheumatoid disease / RA. Technical glitches have forced me to wait several days, but you can find it in your email box very soon! If you’re not subscribed to regular posts, Click HERE to Subscribe.
This content contains referral links which mean the blog receives a small commission at no cost to you.
I am so glad you wrote about this. It can be terribly embarrassing. I can remember times when I’ve been in a public bathroom and wondered if I would be able to get up. Even a I always use the handicap restroom now, but that can still be difficult. It still hurts to grasp the handicap rail, especially if my shoulder is flaring, too. In response to No. 3 (again, if this is TMI for people, then just move on to the next comment). This has been one of my greatest challenges. After RA, I started getting frequent UTI’s and started wondering if there was a connection. I started cleaning with a wet washcloth (which isn’t easy, but easier and more efficient) at home and keeping baby wipes in a ziplock bag in my purse to use in public…and I stopped getting UTI’s.
Man can I relate. I am so grateful that when I was building my house (right as I was diagnosed with RA and cancer having no clue just how bad my RA would get) the builder had the foresight to put a tall toilet in my master bathroom. My toilet paper sits on the counter right next to the toilet not even on a roll. The stalls with bars are helpful and I do use them but my hands sure hate gripping the bars but at least I can get up. This disease makes even the simplest task hard.
Thank you for talking about an issue moat won’t address. I to have had shoulder problems and found using the toilet paper very difficult if not impossible. It was incredible embarrassing to go to the medical supply store and purchase a long handled helper. I find washing my hands to be a comfort. The warm water feels really good and I find myself standing there as the water puts over them.
I am soooo glad you wrote this! Thank you for helping me feel I’m not alone in this. I though maybe everyone else had solutions since no one(even doctors!) Ever talks about it. Needing help to get off the toilet is embarrassing enough-having A terrible time trying to clean up and crying in pain is a horrible experience. During flares I am home anyway so underwear depends on how bad my pain. A long gown(muumuu) and shoulder blanket is it, because bra fastening is also out. Toilet wipes are essential to feeling and getting clean. Maybe this is why bidets were made in the first place lol
I have missed this conversations, so glad you are back Kelly. (Praying for you and Roo). Using the toilet and showering hit me the hardest. They are the most intimate daily functions and losing that independence is a major blow. A “normal” day trip to the toilet. Wait until you have no choice to move, take 1 1/2 minutes to transfer from chair to wheelchair. Navigate to bathroom, hope you don’t want privacy because the door won’t shut with the wheelchair inside. Take another 30-45 seconds to transfer from the wheelchair to the raised toilet seat while the dog pulls your pants down. Change mini pad because you started leaking during the transfer. While you do your business, start getting the toilet paper and rolling it to fit the wand, struggle to get it secured and all the sharp/hard places covered. Using both hands to hold the wand push the paper covered hard object over all you tender parts. Follow up using baby wipes instead of paper if needed. Replace mini pad and stand up. Take time to get your balance and be sure you won’t hit the floor. Using the back of you hands pull up pants (elastic bands ftw). Now go take a nap. Oh and if you leave the house don’t forget to take the wand, baby wipes and the dog.
As I sit here in tears from the pain in my right hand, wrist and arm I can so relate to everything you have said. I can’t use my hands to pull myself up and my knees won’t help either. And as for being able to wipe, what a challenge. Yesterday I couldn’t even think of one joint that wasn’t in excruciating pain. I do try to use the handicapped stall but then when you walk out, people stare at you like you are an inconsiderate fool. I miss my ‘old’ life of being able to do things I wanted to do, even simple things. So thankful for you Kelly and prayers for you and Roo and your current situation. Sending love and gentle hugs.
I am glad, too, that you brought this up! The middle of the night is excruciating just getting to the bathroom with the ankles, knees and feet hurting. Night shirt or gown is best, less to maneuver with painful hands. This you will love or maybe appreciate, I literally am pulling up gown with one hand while sliding down panties with the other on the way to the bathroom just so I can drop or fall onto the toilet seat! Lolol! Never in my wildest dreams would I have ever imagined living this way…unreal. I thought biologics would have resolved the middle of night pain…it is what it is. 🙂
I am glad to have found this but I have a question. Is there anything that can help with wiping your bum cause if your fingers can’t crash the paper then you have a wiping problem.
I am just realizing how terrible arthritis can be. For more years than I can count I have had horrible back issues and had a couple of surgeries and an implant (spinal cord stimulator), then I fall more than a couple of times. My knees made me wracked with so much pain I thought I’d never walk again. It is arthritis. Plain and simple. The pain can get to be very bad. I have not had the issue with the wiping yet, although it is a feat to be sure, and I use the toilet riser because even then the pain is terrible that I cry out. I’m not in dire straits by no means but know without further treatment I won’t be in a wheelchair temporarily. I can’t walk shopping now. God bless you all. He gives you strength to do what you need to do and no one should ever say this information is TMI. We all need it sometime. ox
Thank you my sister for having a place to talk about things that we fight embarrassing or difficult to discuss with anyone else! I have been wanting someone to commiserate with me about the difficulties of bathrooms for some time.
Not too long ago I was chewed out for using the handicapped toilet because they couldn’t see my need. I wanted to ask, “Are you the one who is going to rescue me when I get stuck on the regular toilet?” No joke, my dear daughter has had to come to my aid more than once. When heading to use the toilet now I find myself exaggerating a limp in the hopes people will see I need that stall.
One thing you haven’t mentioned is how I need to lean on the sink when washing my hands. Especially on a day I am using my cane. At home our sink comes out of the wall and has no legs or pedastal. My husband is worried I will pull it off the wall so I said we really need to find a way to add legs/support because I know I will need to lean.
And let’s get to the most embarrassing part. There are times when I am trying to clean myself that it really hurts to reach and my fingers sometimes pop as I manipulate the tissue on my bottom and I want to scream.
I was wondering if anyone has tried adding a bidet attachment to their toilet and found it helpful? We live in an apartment and cannot change the entire toilet or sink but I just thought maybe adding legs to the sink and a bidet for cleanliness to the toilet might help. Any tips?
For me, the worst has to be low toilet seats. I found out the hard way, but had no choice but to fall on the seat. Took a couple of years before my tail bone wasn’t hurting or inflamed. Dealing with monthly female needs also adds insult to injury.
I just had a new high rise toilet installed at the advice of my plumber. Unfortunately, I did not try it out first. When I sit on my new toilet, only my tip toes touch the floor. Ouch! So I bought a toilet surround step stool but that is not working either. I assume these toilets come in different heights so try them out first. It’s a great concept. Oh, and I’m tall too so I was very surprised that my new toilet is too high
So sorry to read of all the pain,suffering and challenges. This is such a ruthless disease. My heart is with you all. A problem not mentioned is getting in and out many doors. Turning those little knobs to lock and unlock the public restroom can be a major challenge. Times I considered crawling under the door but that would have way too many challenges.
Oh my goodness, YES. I can relate! I really want to look into that wand thing and maybe a bidet. I had to train my husband to NOT close the bathroom door before bed so I wouldn’t have to try to turn the doorknob in the middle of the night! Oh! so many things to think about.
I’m glad you were bold enough to mention this kind of stuff.
There is something to help with wiping, when I had a 3level lumbar fusion I found a wand type tool at cvs with toilet aids, rubbery end that you can lay folded paper over and wipe holding the handle. It works really well. Says to wrap around end but that was much harder getting it off. Wasn’t much couldn’t have gotten by without it so worth a try. Handle angle and width also made it pretty easy to hold.
There are so many people suffering from this disease. It is a pathogen hiding in your tissues where your killer cells can not reach. In order to reach these pathogens your body has to attack your tissues , ligaments etc. Your body is super, super intellegent. All Mighty has created a body that does not attack it self without any reason. It is not an auto Immune dis-ease but due some other factors.
Thanks Kelly, and all who have commented. Definitely an issue. Getting on and off the toilet up is often difficult because of knee pain and I use handicapped stalls if I’m having a bad day because the toilet seat is usually a little higher (though often not enough). Using my arms and shoulders to leverage my way up and down can work- unless my flare is also in my wrists, shoulders or hands.
In a public bathroom or even at a friend’s house, sometimes the doorknobs are hard to turn and there have been times I thought I would have to call out for help (locking the door always dangerous for that reason).
At home, I keep toilet paper just sitting on the counter – for me, much easier to pick it up with both hands and pull off the tissue, than the turn and twist needed to reach the roll…although not so great when I clumsily knock the whole roll onto the floor- requiring impossible extra steps to pick it up!
Very important topic! Someone mentioned a bidet. That’s what I’m in the process of looking in to. They have some inexpensive ones on Amazon but make sure it’s made in America because the fittings from other countries don’t fit with ours and they do not make adapters. They can be pretty pricey if you add all the bells and whistles. They have a luxury one that automatically raises the lid when it senses movement. It also washes and dries you and then cleans itself. In my dreams i buy that one! Ha ha
Also, the faucets that turn on with touch or sensor. We don’t have one but will soon. My family bought me a battery operated soap dispenser for hand washing and that’s been nice. In the shower my husband installed a chair and shampoo/ dispenser that works by pressing a button. Still painful but less than the pump. Now if I could get a walk in tub or shower so I don’t have to lift my leg over the tub. That’s torture!
Kelly, so glad you brought this up. There needs to be some inventions to help us out in this area!
Oh yes Christina, simply putting a chair in the shower changed my life. But I agree, lifting my leg to get in and out of the tub is torture and a bit frightening. It means so much to hear I am not the only one.
I have family members who tell me my muscles are just weak because I don’t exercise enough. I have exercised my whole life and although I have had to adapt how I still stretch and work my muscles every day. I think they assume I am just out of shape because I am overweight (always have been) and now have trouble walking.
I would never want anyone else to suffer but I have to admit it is validating to hear this disease affects others in the same way and it isn’t anything I have done or failed to do. My own children keep telling me I just need to try harder and push myself more. What they don’t get is when I push myself too hard I end up in bed for days!
Thank you for this article. Prior to building this home I had to use a toilet extender to sit on the toilet. I had one in the house as my elderly mother needed to use it. Quite a shock to need it myself. I put a tall toilet in my house and just love it.
I try and use the public handicap stalls…quite a comedy using the others both sitting and standing.
My toilet paper is on a stand that I move to a comfortable place for me to access. I also have a
problem with wiping and find pre moistened towelettes are awesome.
Hang in there! Thanks for the confirmations that this is RA. I often question is this my RA or just my old age. lol
Once again, I feel less alone! Thank you, Kelly! bidet toilet seats are great and can be installed on any toilet and they’re not too too expensive.
well i have the same disease like rheumatoid arthritis but i am using my medican properly and avoiding such thing to eat which increase my swelling and pain so this is why i am felling better and very much strong to fight with rheumatoid arthritis dear all you may not believe on that With Rheumatoid Arthritis i am also going to Gym for Bodybuilding.
Thank you! I feel understood now 🙂 Honesty lifts up the burden of RA in this area of life. Thanks again 🙂
I can totally relate I have Psoriatic Arthritis in both my hands, wrists, Knees & one shoulder I was only diagnosed june 2015 so still struggling! At home I have a Mowbray toilet contraption I hate it but I wouldn’t be without it, & I use baby wipes instead of toilet roll & when washing my hands is impossible I use the little bottles of anti bacterial gel & I’ve bought a kids inflatable rubber ring to take with me to my mums at Christmas as her toilet is ridiculously low & causes more pain in my knees, but What I really miss is having a relaxing hot candle lit bubble bath, I struggle to shower now instead Sux ? x
i may have skimmed to fast on some of the comments.
one day back went into terrible spasms. could barely use the throne. it spurred me into dealing with the hallway bathroom. turned master bedroom into guest room. no way i want to deal with scrubbing the tub.
higher throne now,
raised counter and sink up. nice less mess brushing teeth and washing the face.
of course went lever handles on the faucet.
this bath only has shower stall. the stall is fairly tight, not sure how to get a little seat in it. BUT next purchase a spray. hose.
just like when the kids were little and could not hang towels (or coats) up neatly. i have cone back to hooks.
dimmer switch put on lights. need good light for cleansing, but who needs glare when body is throbbing.
my shoulders are still Ok. it hurts to read about hygiene issues. 2 more items.
the higher throne can create another jolly joy, so consider getting the charming “potty squatty”
FB friend in another group, had a very thought out toilet with wash and dry feature. seen ad for it europe(in english) i can’t get my head wrapped around that one, but reading some of these posts. sounds like a an idea to investigate. She has some serious issue courtesy of this disease.
I have had similar problems but one incident sums it all up for me….
My husband decided he would take me to a nearby restaurant for a favorite meal of mine.
After ordering I needed to go. Getting out of the booth was agony as I couldn’t use my hands to help me scoot. Getting up was a struggle. I made it to the bathroom door which was one of these heavy doors with a strong spring requiring both of my hands to open. By the time I made it to the toilet and had managed to get my slacks down tears were welling in my eyes. The reverse happened on the way back.
As I sat there the tears poured out of my eyes dripping in the gravy. I was unaware of the tears as I tried to spear my cut up pieces of meat my sweetheart had prepared for me.
I was unaware of the tears because it wasn’t me who was crying but instead it was my body. Releasing the pain through tears.
Patricia – I learned before RD to ALWAYS wipe front to back. I had almost monthly UTIs back then, and kidney complications! Now, after RD, I’m having to learn additional and new ways to wipe front to back. I’ve tried several “assistive devices.” Can’t return them if they don’t work out for me. Money down the drain. Hubby is having problems with his hands, now. (No, he won’t even mention it to the doctors.) So he purchased TWO of the “assistive device” he was interested in. He gave me one. It was one that I ended up throwing away back when.
RD just keeps on “giving!” GRRRRRR!
Then there are the dog and cat who think it’s their jobs to “supervise” me – but that’s another story!
I have a “Blue Bidet” attachment on my toilet. It does “front” and “back.” From experience I can say: have an experienced plumber put it on. I can also say that cleaning it is a bit of a problem. Get someone else to clean it – wearing vinyl gloves. There are some difficulties that I have with it, but I won’t be without it. We even have a second one in the basement – in case this one fails for any reason.
Get the one that attaches both warm and cold water – especially in a cold climate where the cold water is REALLY cold!
It may not get all the bits off, but it will make it much easier for you to get them for yourself.
I have GOT to teach the dog to wipe me with a wad of TP in his mouth…
Haha! What a great article. There are some things you just can’t discuss with family and friends for the one reason…..they just don’t get it! How many times have I thought to myself, “I took all this for granted?” Flushing the toilet using the handle! OUCH. And pulling up the jeans. Not the two easiest things to do. Glad I can share. Believe it or not….it’s a load off my mind. I am understood by some.
Absolutely relatable. My distress comes from the right leg an hip area to twist to wipe! Tried wiping sitting down only to get several UTIs. Never thought twisting to clean would be such a “pain”. Steroid injection can’t be given often, but help a little.
I have fused wrists so I always use the handicap stall. You need elbow room if your wrists don’t move. Plus I need to turn into a pretzel to get cleaned up. It’s lucky some parts of me still work.
Oh my gosh, I’ve never told a single soul before how hard it is in the bathroom. I knew I couldn’t be the only one but reading all your comments made me feel not so alone. My wrists are so painful, twisting them to use that paper is so excruciating and I worry so much that I’m getting the job done! Flushable wipes help. Showering or bathing is difficult, both turning water on and off, and reaching everywhere. Also brushing my teeth! You have to twist your writs to do that too even with an electric toothbrush. Then there’s putting on make-up, hair, all that. I’ve had to make major changes. Oh how embarrassing to admit any of this even to my family until now. Thanks for this post.
at least we know we’re not alone now Ros. Hang in there.
I have had 18 urinary tract infections in 14 months while on Remicaid and Methotraxate. I spent 4 days in the emergency room getting Rogen antibiotic injections recently while on a Christmas vacation visiting my family. My Rheumatologist took,me off of all my meds. And my urologist is sending me to an infectious disease specialist. I am waiting to get a second opinion from a new Urologist. meanwhile I am having my immune system tested. I am losing hope on even keeping my symptoms in check. My whole world revolves around pain and the toilet. Any help,or anyone experiencing the same thing?
As a man shaving comes to mind
I can really relate to this conversation. I have placed the tp on a counter next to the toilet so that I don’t have to turn. I only wear elastic waist pants and pull them up with fingers. Can’t use thumbs at all. Can’t take baths anymore, even with bars. Knees too weak to kneel to get out. Have bars in shower, so that helps. All in all, not very pleasant.
we also have one of those step over and in tubs. what a pain, literally!! even when i don’t have a bad day, i’ll inevitably catch the door rail between my toes!! ouch!! I’m hoping to eventually take out that tub and put in a nice walk-in tile shower, complete with a bench. My husband is older than I am and is most likely, looking at a knee replacement this fall. It would definitely be less of a slip hazard than our current set up. We could both benefit from the taller toilet, too! I never really thought of the handicap stalls in public… work already is equipped that way in all stalls. I’m past the point of caring what people say if I do come out of the handicap one. I guess I’ve worked too long in a factory and don’t have time for the BS. life is too short.
For me the worst part about public bathrooms are the getting out part. I always get stuck. Those damn locks Some are Just so tiny, rusty and imposible to deal with.
I carry those flushable moist wipes. Even using those, I still get UTI if I don’t wash with soap and rinse well at least daily (and don’t tell me I’m the only one who can’t manage a “real” shower/bath daily!).
I’m an XXL gal, and can’t get down in the short tub for a “real” bath. I keep telling the kids I need a new body for Christmas, but they haven’t yet found the ACME Body Shoppe!
Azhar Zaidi, And what qualifications or citations do you have to backup the outrageously false claim? None I’m sure, because you are wrong. This is a well studied and understood disease that is known to be an autoimmune condition. You are just displaying your arrogance and ignorance by this statement. Crawl back in your box where you belong.
My previous comment is directed to Azhar Zaidi
I’m so glad you wrote about this! I thought I was the only one.
I face ALL of these issues during a bad flare up, which is basically all the time.
I’m almost scared every time I wake up cause the first bathroom trip of the day is the worst and most painful.
And, oh wrists! How I underestimated you so much! Buttoning/unbuttoning pants now is a MAJOR accomplishment after 10 minutes of whining and crying.
Sigh, RA. Why have you made everything so difficult, I had just started to really live my life.
Oh I feel all your pain. I am luckily in remission currently but I remember the struggles a few years ago. Along with my RA I also have Crohns so I have frequent bathroom trips. The pain and tears just to get yourself lowered onto the toilet and then the feeling like you are stuck there because you can’t stand up, it just hurt too much. I’d wear loose fitting pants that I could just hook my thumbs into to push down and kind of using my palms to shimmy them back up. So humiliating at time asking for help with everything from opening doors to bottles and jars to combing my hair. My sympathies to you all that you are still struggling with this horrible disease.
I am so glad you are discussing this Real struggle. I have found a few solutions that have improved my quality of life in this area. The travel bidet and ine that easily installs on my toilet at home have been life savers. I tried the one that attaches to the seat first but cleaning it was just gross so I found this one and it is perfect! It actually is an added tool for cleaning the toilet too. https://www.amazon.com/gp/aw/d/B008F0FL5G/ref=sxts1?ie=UTF8&qid=1476902526&sr=1&pi=AC_SX236_SY340_QL65
And this one I keep in my purse for when I am away from home. You can also get them with extended nozzle. https://www.amazon.com/gp/aw/d/B008CSDKSQ/ref=mp_s_a_1_1?ie=UTF8&qid=1476902807&sr=8-1&pi=SX200_QL40&keywords=travel+bidet&dpPl=1&dpID=51Sm%2BAkqKfL&ref=plSrch
It is much easier to pat dry than to have to actually hurt myself trying to get myself clean on the toilet. Both are working so well for me…I hope they help others.
These are great tips. We want to start replacing the bathroom faucets and door handles with levers versus the knobs we have, my rheumy told me to do it more than 5 years ago and we still GHent though I wish we did, I look forward to seeing your gift guide, I updated my gift guide for RA patients recently on my blog to include lots of the products I love and helped me.
is cosentyx ok for the liver.?
Hi everyone!
First time here and reading these posts have brought tears streaming down my face. I am truely saddened and HAPPY I found this website! I’m not ALONE! OMGosh. I am 46 yrs old and I have RA + other health problems to deal with. I have been there not being able to move my shoulder(s) to reach and wipe etc..
Thought I would throw that in .. Lol
Really no laughing matter though.
I have found that wearing a one piece silky type t shirt / pants helps during these horrible times. Also silky sheets, panties I have found are much easier to maneuver.
Sending healing thoughts and prayers to those who read this. GB
I have some family members with Rheumatoid Arthritis. They have recently gotten a PottySpa electric toilet seat and it has helped tremendously! They don’t need to worry about wiping anymore as the seat does all the cleaning for them. It is just one less thing for them to stress about as I can’t imagine how difficult it might be or embarrassing they might feel when they need to ask for help. pottyspa.com
I have Ra ,I have had it since I was 16 .I did not become fully disablied until 6 yr ago had a seizure and stoke from my Ra swellon the lining of my brain causing restricted blood flow .i am not sure where to get help my bathroom is getting harder for me as my knees are so swollen and getting hard to lift over tub .Are these any programs that can help me with a handicap bathroom .My wife pays all the bills and we are just getting by as my meds are so expensive.i had a hip replacement last year and I need both knee replaced..i need a handicap bathroom and can not afford it
Hello. Have you checked with some of the Social Services to see it there is assistance with he bathroom?
Can you get any help with the medication paid?
You may want to check with the Federal program that checks out benefits, online:
“benefits checker- department of aging”
I have two total knee replacements & RA (disease)
I just love this article. My name is benjamin Wright and I was diagnosed with JRA when i was 10, I am now 21 and I’m affected in both my elbows and fingers on my hands. Along with both ankles and sometimes(you guys know how randomly after months a joint flares that doesnt normally hurt) my knees. It feels so good to see other people with my same illness.