When my journey with Topical Steroid Withdrawal began in October of 2016, I was the first in line to tell you that I hated the idea of taking a bath. Now for those of you laughing at me, I am a fan of showering everyday, I just don’t like bathtubs. haha Now that we are on the same page, I am not judging those who find it a good way to destress or relax, it was just not for me. Yet as I battled the dark days with oozing, intense inflammation, and human snow-globe level shedding, showering was not an option. Soaking for hours in a bathtub became a great way to accomplish both being clean and escape the itching, and in some ways made me feel normal or have a “break”.
I will preface that I think baths are a great solution for patients trying to navigate healing for TSW. I will also say that not all “soaking” experiences are created equal. In the times I was both fortunate (and extremely anxious) to travel, I have confirmed that considering a bathing experience is entirely dependent on the water quality.
For example, when we built our home in early 2016, we installed a two-stage water softening system* that uses carbon to pull out the junk that causes dry skin and itching for those with sensitive skin. The water softener became a beautiful mark of provision from God, as while we made the choice for my eczema at the time, it would only prove to be a further blessing when my withdrawal started. While this journey has certainly had many hellish days, God has proven faithful and good time and time again.
* They don’t make the one we installed, but here’s a link to the new version. :)
To clarify on why I think soaking is not for every TSW patient, let me illustrate the experiences I have had when traveling. Whether it was a hotel or an AirBnB, most of the time my new environment would not have a water softener. I could tell a difference in the water within seconds of washing my hands. The water I have at home in Indiana is considered naturally hard water, without running it through a softener. Once softened, the water feels like silk. It’s smooth -not coarse. (Genius description, I know.) If you rub it between your hands it glides evenly, where as unsoftened water feels gritty…like you have sand between your hands. It’s almost like there’s a film between your hands or something. While it may sound silly, I promise you it makes all difference when you both soak and go to get out of the tub. The chemicals and compounds that are not removed from a water softener end up sitting on top of your skin, and can both dry out the skin faster and cause further irritation. There were times when traveling where I felt like my skin was “mad” when I got out. :(
During my travels I would have to cut my soaking time in half because the water was significantly different. If I was not careful, it would create more damage than benefit the longer I stayed in the tub. This was especially the case when it came to clearing dead skin off of my face. The irritating, non-softened, water would aggravate the skin and cause me to itch when it was entirely the result of the chemicals and compounds in the water. Usually in TSW the itch flares are deeper in the tissue…someday we will have a scientific explanation of exactly what is happening. All I can say is that my skin burned and itched when I traveled not entirely because of TSW, but because the chemicals in the water had not been removed. The itch was on top of the skin, not deeper next to bone as is traditional with itching flares or “zingers” as we like to call them. When traveling, it was not uncommon for me to think about filling my bath tub with purified drinking water, or rubbing my face with water that came from bottled drinking water as an alternative. I also had to put lotion on like lightning when I got out of the tub, as my skin dried out super fast. With having softened water at home, there was more of a grace period.
I will also share that despite having softened water, in the first six months of withdrawal it would sting like needles to wash off with the shower head after my bath. You might not think it necessary after soaking for so long, but you need to since there are ton of dead skin flakes floating around. I know it’s gross, but that’s the reality. This painful experience eventually produced significant anxiety when I would think about soaking, and still affects me today when I think about showering.
Thank God that therapists exist, as I have been gratefully been able to make significant progress in overcoming the mental battle of fear and afraid of being in pain. The fears I have today are not reflective of my current condition but rather when I was at my worst. (I do recommend therapy while you are going through this as a patient if you are able to afford it.) I encourage anyone going through this to talk openly about their fears with TSW to a friend or family member, as it can take a lot off of your chest and help you define what exactly you are afraid of, then work to take a small step in overcoming it.
Here are a couple of items we used to help make my time in the tub as beneficial as possible. Before I jump into that, let’s tackle some FAQ’s that come up with baths:
Temperature
I would get it the water as hot as I could stand it, and it still applies today for showering. This would mean slightly draining the tub every so often as the water cooled and refilling it to keep it hot. I found the heat soothing and beneficial in getting the dead skin off as gently as possible. Props to people who do ice baths. That isn’t something I tried or really wanted to consider, but I have heard of other patients finding it beneficial.
Length of Time
I’m going to leave this up to you as the patient. All water is different, so if it feels bad to stay the tub longer do what you think is best for your body. In the early days, I found I needed at minimum an hour to soak before I was presentable in a public setting. I found my sweet spot to be two hours. Which was actually three hours if you included half an hour of prep time and half an hour on the back end to get dressed. There were some days I soaked between 3-4 hours, but it wasn’t a consistent thing. As I healed the time I needed to soak decreased. Some of you will be curious what made me jump from soaking to showering, and I would say it was a combination of force with choosing to travel for a work conference, and also being willing to test a theory of trying showering. I cannot stress enough how difficult mentally it was to be willing to make that jump. My advice is to take it one day at a time.
The progression I used over the years was:
soaking (2 hours) every day >> soaking every other day (2 hours) >> skipping a couple of days back to back (no moisturizer withdrawal) >> showering (1-2 hours) every day >> skipping a couple of days back to back (NMW) >> eventually start showering every day with less time (not there yet)
Bleach Baths
Bleach baths are helpful in the sense of killing bad bacteria that can build up on your skin and help mitigate infections. Bleach is also filled with toxins, and you really shouldn’t expose yourself to them in my opinion unless absolutely necessary. I think I did less than ten bleach baths in the entire time that I have had TSW. I would not encourage another patient to make it a normal part of your routine, but I would seek medical counsel on the subject.
Epsom / Dead Sea Salts
Yes, they were beneficial for me, but only do them for a limited amount of time as they can dry out your skin. Ten or twenty minutes maximum I think was what proved to be the cut off before it started being counter productive. I don’t know if salts would help those with non-softened water or would be adverse in the desired goal. Here is the kind that I used, I will say that I did feel like they made a positive difference for my skin.
Essential Oils
I use them topically in my lotion, but I don’t personally feel there’s enough medical or scientific research for it to be something safe to consider putting a couple of drops in the tub or even consuming orally. I will say the only oils I use are Young Living. I like that they control the entire process “from seed to seel”, so I don’t have to worry about putting a concentrated plant on my skin that could have been exposed to pesticides. If you’d like to learn more about what oils I use to help my skin, comment below and I’ll make a post about it. :) I will also add that it is extremely important to do your research on these, as too many people just throw them together and put themselves in harms way. Not all essential oils are created equal, and many contain fillers that defeat the entire purpose. Like supplements and vitamins, they are not monitored by the FDA, so please be careful.
Personally, I have been using them in a homemade lotion (post coming I promise, as well as a video) since this started and feel that between the lotion and my diet it has been one of the biggest catalysts in my healing with TSW. At the time of writing this article, that would be three years and six months in healing. If you want to purchase oils through Young Living, here is my direct link. If you have questions let me know, as I am happy to walk with you in learning how to use them.
Other Tips
We used a cover on the upper tub drain to be able to fill the tub higher. Please use caution if you purchase this, as you will need to closely monitor the tub since it will be more likely to overflow. If you buy this, you have been warned. :)
Soaking for long periods of time is bad for your neck and spine due to the poor posture. I wished I had purchased one of these neck pillows, as it would have made the hours in the tub more comfortable. I would imagine you will need to watch for things like mold and mildew build up, so wash it regularly. My challenge with this product would be that our tub is flush with the wall, so you’d have to get creative. I did end up seeing an osteopath because the posture in soaking for long periods of time created a bulge with a couple of disks in the back of my neck. I think it wise to have regular visits with an osteopath if you are going through this as between being couch ridden and soaking, our spine takes a hit with bad posture.
For those of you without a tub in your home, we did try this inflatable tub to help resolve poor posture. My consensus was that it didn’t allow me to get the water high enough and that posture situation didn’t improve much. The neck support wasn’t significant, but better than none. Yet if you have nothing and need something this is a good choice. I liked that you could zipper the top to keep both the water in and help with heat loss. I would also recommend putting towels down underneath it before you put it in a shower or bathroom with a tile floor, as sitting on tile or a hard surface for hours is going to be hard on your bum. If you buy this, do think about how you will drain the tub, as I imagine for some families that will be tricky.
Closing Thoughts
I hope this post was helpful in helping those of you personally or as caregivers navigate the conversation around soaking with TSW. Since mid-June of 2019, I have not soaked but have been able to fully transition to showering regularly -that is a whole lot of God’s grace right there, folks! Throughout a typical week I will skip 3-4 days (not shower at all) and practice a mini version of no-moisturizer withdrawal. In that time, I try very hard to limit how much lotion I put on. The concept is to help the body learn how to produce its own oils, instead of relying on another source.
When I do shower, it takes me between an hour to ninety minutes to feel good about how everything feels. It has taken a lot of mental work to get to this process…to have courage to try new things and be willing for pain to be a possibility…but more and more I am finding my fears unfounded because my body has healed. I plan to do another post about the mental challenges TSW has brought on, but for now I will leave you with this encouragement.
”Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.” John 14:27 NIV
Thanks for reading this, I hope it was helpful and brings you both peace and comfort. May your day be filled with beauty, joy, and hope.
Do you have further thoughts or questions about this? Comment below, as I am happy to help! :)
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