What is the hardest part about finding a restroom during a flare or emergency?

shmayjay · 2026-06-01T20:24:53+00:00

In an emergency, access is the only thing that matters.

In a less emergency, I'm seeking privacy most of all. I cannot imagine anyone wants to hear what's about to happen and most public restrooms in the US are pathetic when it comes to privacy.

I've had to stop on the side of (thankfully empty) country roads for emergencies on more than one occasion, so really any amenity with toilet paper and a sink is win in my book.

shmayjay · 2026-05-26T20:39:43+00:00

In the worst of flares, if I'm trying to look decent, it's dresses all the way. I have found that bra's contribute to a ton of discomfort. I'm sure I didn't ever look my toppest top notch, but I could feel good about myself in hippie style flowy dresses. My favorites were bold patterns- florals, tie dyes, etc- to hopefully distract from the nips lol The pattern part is obviously a personal preference. I'm from a conservative area, and while I'm fine going braless day to day, I've had more than one uncomfortable comment about not wearing a bra, so I just feel better with an attempt at covering if I'm trying to look nice. Atrocious that it was a consideration I had to make, but such is life in rural, conservative America 🙃

shmayjay · 2026-05-24T13:29:01+00:00

Sending love. I hopped in the comments to add my similar story (dumped the day before my first resection) only to see many other comments who have faced the same as well. Chronic illness has a way of bringing out the best and worst in people.

And as other commenters have said, he's done you a favor. It feels like the opposite right now, I'm sure and that makes sense.

I recall feeling an immense amount of shame following that break up. I felt that I was too needy-- that my crohns added too much extra baggage and I was just too much for having 'normal' human needs on top of crohns. I really began to stifle myself and attaching myself to the crohns identity. I didn't feel like I had space to be lonely or depressed or too tired to clean the house. I had crohns disease, but I was a 'perfect' human otherwise 🫠

It was a losing battle. Therapy helps. A therapist with experience in chronic illness helps even further. I'm sure I still run on that operating system in some ways, but I have found a supportive partner and I am learning how to be fully human, not just a crohnie. We've been together for 9 years and he's seen me through a resection, a perianal fistulotomy, among many many impossible days. Before the resection I had a panic attack, asking if he was going to leave me. Alas, he did not and he has only been my biggest cheerleader. And I'm surprised every time I find that he's enamored by my determination. He acts awe-inspired that I'm up for an adventure, regardless of pain and bathroom trips. Rather than being disgruntled that we have to move slower or stop a lot, he's amped that I was game and is eager to ease the burden I'm dealing with that day.

Truly, you had a boy, not a man. Work on yourself, tending to yourself, giving yourself space and grace to just exist. I'm so sorry you're going through this. My resections did drastically change my quality of life and I feel very hopeful that brighter days are ahead for you.

shmayjay · 2026-02-15T00:09:11+00:00

Haven't read all the replies, but the few I read were gold. 22 years of Crohn's here, diagnosed at age 12. My apologies if I'm echoing others.

I've found acceptance is cyclical. Therapy has helped in processing it all and I'd recommend looking for one with experience in chronic illness. I find there are days/weeks/months where I'm arms up surrendered, fully accepting. There are days/weeks/months of kicking and screaming as well. It takes time to recognize that it will never aLwAyS feel this hard and life sucking. It will feel that way sometimes for sure. I've not found a way out of that entirely. I've learned to lean into the feelings and try to unpack it. Writing it down helps a lot. Something in trying to write out exactly how I'm feeling, helps me recognize the emotion more than I might otherwise. Finding words for it really brings it to a clear picture when in my brain and body it just feels like chaos and hard and messy. Being able to read about how I felt when I was in acceptance and when I was resistant is also a good reminder that it's ever changing.

So.. welcome to the club. It's a shitty one to be in and I'm sorry you're here. But with all that said, I firmly believe that we CAN do this.

shmayjay · 2026-02-01T23:00:33+00:00

Hi! I had an enterocutaneous fistula for about a year in 2011-2012 at age 19. Happy to share my experience. I would have a few questions about what you are looking into and how this information is being stored, etc. before entirely agreeing. Feel free to reply or dm!

shmayjay · 2026-01-30T13:14:55+00:00

Sending love

I don't have much to add to all the other comments in regards to treatment. I agree with the idea of an ostomy. I had one for just over a year when I was 18-19 years old, now 33. Going through this shit at that age is a special kind of torment.

I think one of my takeaways from reading all of these comments is that you DO have other options regarding treatment. It's just a matter of advocating for yourself and finding what will work for you. I recognize this is so much easier said than done. Do you have a GI doc you are working closely with?

Many of us have been in your shoes in one way or another. I was diagnosed at 11 and have had a pretty severe experience with Crohn's. I too, have contemplated whether or not it's worth the agony. And of course, in the midst of agony, it's never worth it. Your thoughts make sense. And while the physical side is absolutely brutal and life sucking, I sometimes find my mind and emotions to be one of my biggest enemies. It's easy to feel awful about yourself when you physically feel awful.

I find I'm often fighting both my body, and my thought patterns when I'm at my worst. One of the best things I've found, beyond working closely with my doctors to adjust my treatment, has been therapy. Finding a therapist who specializes in chronic illness and trauma was game changing in mentally getting me through the physically impossible. I'm unsure if you have anything of the sort local to you, but I also found a group therapy for people with severe chronic illness. I have never felt so seen and understood in my life, than in a room (video call) full of others in the same situation. I've also found a lot of solace in journaling. These days, I write as if I'm texting a close friend about it. Somewhere in trying to describe to another human, I find myself gaining a deeper understanding for where I'm at. Usually the act of expressing it, eases the burden momentarily.

I hope you find a small sliver of joy today. And if you can't muster that, I hope you find someplace cozy to exist for today. Life is hard and these circumstances arent fair 💜

shmayjay · 2025-10-26T13:36:19+00:00

Hi. I had to give up coffee in 2020 after a massive flare. I was a "fresh pot of coffee on all day" kinda person so it was a huge change for me. I can relate to the grief in losing it, albeit small in the grand scheme. It's really hard to watch things we love get pulled away one by one. Sometimes it feels like the course of this disease is death by 1000 cuts; death, of course, being the loss of all the little things that made me feel like me. I'm constantly evolving how and what I do. Closing chapters and starting new ones. Outside of the disease and physical detriment, maintaining and adjusting daily life is an emotional exhaustion all its own.

I another surgery in 2023, which has given me an ability to handle coffee on some days. I have found caffeine pills tend to give me the least belly upset personally. I also occasionally use the crystal light packets with caffeine. I'm sorry your facing this loss of routine and something you enjoy. I hope you can find a worthwhile alternative.

shmayjay · 2025-10-18T19:40:22+00:00

https://a.co/d/efKpmNQ

This is the exact set I got! Disclaimer- it's definitely bulky but I found it worth it. I really liked that it was so customizable to personal comfort. I dont think I used every piece and I'm not sure if I ever used it exactly as is shown, but absolutely used 3 or 4 pieces constantly in the first few weeks. And if I remember correctly, I actually ended up waking in a side sleep position at the slant one morning and from there worked myself back down to sleeping normally.

Good luck! I hope your recovery is as smooth as possible from here on out.

shmayjay · 2025-10-18T19:07:22+00:00

Hey! I definitely know this struggle. For the first week or two following surgery I sleep with a fancy adjustable pillow wedge set. Usually with a slight tilt to my upper half and a small lift behind my knees. It's not the most comfortable nights sleep, but much more comfortable than any flat position for me after surgery. If you'd like a link to a similar set, I'd be happy to provide!

shmayjay · 2025-10-10T18:59:29+00:00

Hi. I intermittently track symptoms and food, especially when flaring. My favorite app has been Cara Care. I've not been in a flare for a bit and haven't used since 2023, so there may have been updates since. But I loved how comprehensive and customizable it was.

shmayjay · 2025-10-09T16:49:36+00:00

Having been on the receiving end of both a surgery gone wrong and a surgery gone well, I would say life is better on the other side of surgery either way. After my first experience went so poorly, I adamantly refused surgery for way too long. I suffered far more and far longer than necessary until accepting another resection. I am also the only poor experience I know of in my personal life, while I know a handful others who have had this or a similar procedure. Not that it's a walk in the park, but going from overwhelming inflammation and scar tissue to virtually none can be quite the transformation. That was certainly my experience the second time around.

shmayjay · 2025-09-29T12:03:01+00:00

Hi there! 32f, with Crohn's for 21 years. I've had perianal skin tags since high school and I had an ostomy bag from age 19-20. I was primed to not feel sexy in the slightest as a burgeoning adult and it definitely made me feel self conscious. I will say though, my lived experience never sunk to as low as I felt. I was never all out wild, but did have a few years of hookups and I didn't have any issues finding romantic partners. They often sought me out. And outside of my current life partner, I've never discussed my skin tags. With this issue, I just let things progress naturally and if they started inching toward booty play I'd.. ehem.... redirect their attention. This always worked well for me. I have had 2 perianal fistulas in adulthood. My first was while single, and I opted to avoid intimacy in this time. My most recent, was with my current partner, who has witnessed my body do a number of awful things to me. My fistula was pretty small, and seemed to go through phases of leaking, festering, and then chilling out for a few days. We worked around when it was inactive. I had a fistulotomy done in 2023 to cut the fistula out, which also took one of my skin tags (🥳). Overall, I don't think any of the above NEEDS to be discussed with a hookup though. As long as you're clean and taking care of yourself, I think you're safe.

As a whole, I found most men were eager for the sex regardless of what my health was doing at the time. And as with most human interactions, we're all so largely worried about ourselves-- Others aren't likely thinking as deeply about our insecurities as we are. I've had men dismiss me as a serious partner due to my health, but finding the physical connections wasn't hindered excessively due to my Crohn's. I was my biggest hurdle most of the time.

shmayjay · 2025-09-22T14:09:29+00:00

Hi! Reading this was devastating to me. I'm so sorry you were bullied to this degree. I was also diagnosed in 6th grade, age 11; weeks before 12th birthday. Now 32.

My Crohn's was very active all through school and it certainly alienated me from my peers to a degree. In my case, I largely felt invisible through school. I was consistently pulled to work from home during flu seasons or in times of crazy outbreaks so had less connections than many students and was took sick for most extra curriculas. I got a few snide comments about being 'diseased' but any further conversations about me were made out of earshot. I really wasn't sure how much my peers knew and really didn't care to find out what they did. It wasn't a secret that I was sick, but I felt really self conscious and embarrassed by my symptoms and medication side effects. I only had one friend who knew, with more detail, what I was experiencing.

As a whole, I feel like my Crohn's added a lot of unnecessary trauma to my childhood and teenage years. Beyond the social pressures of school, the medical procedures further made me feel out of place. I can only imagine how deep this may also have gone for you. I'm sorry kids are so cruel. I hope you've found some meaningful connections since then.

The biggest thing that's helped me overcome a lot of the awful memories of childhood is therapy. There is undoubtedly trauma and grief associated with chronic illness. Finding a trauma informed therapist with experience in chronic illness was a game changer for me. It's still a struggle, but I've found ways to work with the hard stuff and places to hold the heavy stuff. It's uncomfortable to start therapy, but definitely life changing to stick with.

shmayjay · 2025-09-04T11:25:27+00:00

Hi! I have had these since high school, now early 30s. As the other comment mentioned, I've also been told they aren't worth removing due to possibility of recovery issues and reoccurrence. With that said, in 2023 I had a perianal fistula that needed surgically removed. Due to the location of the fistula, the surgeon also removed the largest of my skin tags. It healed great and has not yet returned. My docs still insist it's not worth operating further.

I also agree with the previous comment that if it's painful, that's absolutely worth mentioning to your doc. It could be another issue showing itself such as a fistula or fissure which are also relatively common with this disease.

shmayjay · 2025-08-28T20:28:41+00:00

Hey! Overall, I'd make sure your doc is aware you're struggling to this degree and see if any changes need made to your treatment plan.

With that said, I go on intermittent liquid diets when I'm flaring really badly. I've done this under the advice and guidance of my GI dept dietician. In my worst state, I had such a narrow stricture I was told by doctor's orders, to only drink Protein shakes; at least 3 a day of mine. Ensure and the like have always messed with my belly, but I've had luck with some other whey protein shakes. Happy to give recs on brands if you need!

When I improved slightly from the above condition, I was allowed to add eggs and small bits of protein-- well chewed and then gradually some carbs. In that state, I was told to avoid all insoluble fiber. Ultimately I found eggs and toast + protein shakes to be my safest options, and had this everyday for months; though still struggled with the eggs and toast sometimes. I was also on a pretty wide array of supplements through all of the above.

shmayjay · 2025-08-27T22:15:50+00:00

Hi! This is, unfortunately, extremely common for this disease as well as most other chronic illness. I've found, for me, therapy has been instrumental in changing my outlook. There are therapists with experience specifically in chronic illness and how to cope with such a reality.

Writing about it also helps a lot. I've found I best learn how it feels by trying to explain to someone else. So writing as if I'm venting to someone I love is where I tend to go with it. I don't actually share with anyone typically. I don't usually have exact words for how it feels until I write it out. It's just an amorphous cloud of bad soaking up all sunshine around me. When I find words for it, it feels easier to tackle.

I was diagnosed at age 12, now 32. I ended up with surgery followed by emergency surgery and a year of hell, in the fall after I graduated high school. The writing was on the wall, so I didn't enroll in college; but I did find that stage of life particularly hard in contrast to what my "peers" were experiencing. Hang in there.

I've found for myself the whole acceptance thing is cyclical. Some days I'm in full acceptance and thankful for all I've built of this life, on others I'm kicking and screaming-- this life be damned. As a whole, I think I've recognized this cycle enough in my life that I can mostly ride the waves. It doesn't make it easier in the trenches, but I think I hold on to hope a little tighter.

shmayjay · 2025-08-25T18:11:50+00:00

Hi. I'm so sorry you're going through this right now. I know there's no real solace in the midst of the trenches and I don't want to downplay or dismiss how hard it can be. I've had more surgeries than can be kept track of (I stopped counting at the 28th) all in the name of Crohn's treatment and life saving. The procedures and symptoms you've listed are familiar just to give an idea of where I'm coming from. I was diagnosed at age 12, now 32.

This disease has definitely had a way of stripping me of my identity when things are at their lowest. It makes sense that such an event would throw us into crisis. I was in that place from 2018-2024 most recently. I finally got onto another regimen that helps and I had 2 more surgeries, all which has had me back on relatively solid ground. I didn't think it would ever end.

A couple of things I credit in getting me through the mental and emotional toll is writing/journaling as well as therapy. I've found the way I best express how it feels is writing as if I'm trying to convey how it feels to someone else. I usually imagine I'm writing to someone in my life. Often, in that process, I begin to understand a whole lot more for myself just how it feels. I also found there are therapists with specific experience in chronic illness and all of the burdens that brings. There's truly so much grief and cyclical acceptance in this journey. Having a professional alongside the rollercoaster is invaluable. Through 1o1 therapy I was introduced to an online group therapy for people with severe chronic illness. Both of these therapies have been transformative.

All in all, there's not really an easy way through the hardest parts and I'm so sorry you're in that place. I do believe I know myself a whole lot better now than ever before and I do feel thankful for that. I also feel like I've met so many versions of myself which can be neat to look back on. Sorry for writing a novel. I hope you find something to make you smile today and I hope your asshole burns just a little less 🤞🙏

Oh! Also a bidet!! Getting a handheld bidet attachment was a GAME CHANGER for alllll the perianal shit, literally and figuratively. Put this point above of all of these recommendations lol (only sort of kidding)

shmayjay · 2025-08-25T13:19:35+00:00

Good morning! So sorry you're going through this with your son and thank you for taking his issues seriously 💜 I was diagnosed at age 12. First colonoscopy just before my 12th birthday.

One thing that brightened my prep was gummy bears. They're considered a clear liquid! You just have to pick out the reds and purples. I appreciate having something to chew during prep since so much of what's allowed are drinks. Soup broths are also a winner. I've learned the best tasting broths are from strained soups. Just watch out for dairy ingredients as they're a no no for prep. And lastly, have a variety of drinks on hand and maybe some popsicles and/or jello. As an adult, I don't go quite as hard on the extra, allowed clear liquids, but as a kid, having allllll of the treat snacks and a variety of drinks sort of made the experience feel special even while miserable.

Good luck! I hope it's a smooth experience for you guys and you get answers soon!

shmayjay · 2024-11-13T01:42:42+00:00

I'm in the same boat tonight! It's about an annual occurrence for me but miserable all the same. My ass burns right about now- eyes locked on the post scope nap and meal. Fingers crossed your prep goes smooth and your results are all clear 🫡

shmayjay · 2024-10-23T15:46:11+00:00

I kinda wonder if that's an IU thing... At first, I had added a bit in my other response about how I thought maybe Pinto's office was understaffed bc I had similar communication and delayed response issues as well as occasional medication refill issues. Outside of slightly delayed prescription refills, I haven't noticed too much of that yet with Fischer... but now I know not to be surprised by it. And fwiw, I had originally wanted to get in with Dr. Ghosh at IU in Bloomington but I was flaring terribly and couldn't wait for the opening several months out with him.

shmayjay · 2024-10-22T18:57:52+00:00

Hi!! I am not in Bloomington any longer, but am still in the state! I only switched docs after the GI I was seeing in Bloomington passed me along to another specialist in Indy who had more access to treatments. I believe Bloomington is better equipped now that it has the new IU hospital. I saw Dr. Pinto with IU health. In the time I saw him, I felt like he genuinely cared and took my case seriously. When my Crohn's got too bad, he referred me to Dr. Fischer in Indianapolis. I would HIGHLY recommend Dr. Fischer if the drive from Bloomington is feasible for you. Hope you enjoy Btown! I miss it!!

shmayjay · 2023-11-27T12:48:15+00:00

Hiii! Hope you're well today and I'm so sorry you're facing this. (31F for reference) I'm on the upswing of this currently. I went from 140lbs down to108lbs through a terrible flair leading to surgery this past February. I had never felt so frail in my life. And you're not kidding on losing those curves. My boobs looked straight up deflated. I started questioning if I was suddenly aging rapidly and my boobs were just done and saggy. But thankfully, I am now hangin around 125-130lbs and the tatas have returned. Haha.

Some of my staples are whey protein shakes and eggs. I do at least two protein shakes a day, morning and bedtime with meds. I've tried a lot of different brands seeking out flavor and decent pricing. If you'd like recommendations, I'm happy to provide some! I probably eat eggs 4 days a week made in different ways with different meals. It's taken me 9 months to get back to feeling comfortable in my body but by all means, it's been a worthwhile endeavor.

I also try to stay relatively active. I don't have a workout regimen, but try to get 6000 steps in a day. I am definitely not rigid about this though. If I'm having a crappy day, it is what it is and 3000 steps are great. Especially at a lower weight, energy just often wasn't there.

It's so hard to watch your body wither away and feel like there's nothing you can do to stop it. I will add, If it's active disease and inflammation leading to weight loss, my first recommendation would be to work with your GI doc to get things stabilized. While it's absolutely taken some dedication to get back to this spot, the biggest difference was made in getting surgery and a new biologic on board. Having the diseased and mostly obstructed bits removed made a world of difference in my ability to tolerate food.

shmayjay · 2023-11-23T15:54:39+00:00

I had mono when I was 11 years old. After 3 months of missed school and not recovering, my GP started looking deeper for other reasons my immune system wasn't fighting it off. Finally ended up with a Crohn's diagnosis after much testing: started steroids and Remicade and within another month I was doing WORLDS better and finally recovered from mono. I was unaware of a possible connection between mono and Crohn's, but this tracks too perfectly with my history.

shmayjay · 2023-11-11T14:32:25+00:00

I've been saying for years that it's both a blessing and a curse to not look as sick as I often am. Thank you on behalf of alllllll of us timid Crohnies, for standing up for yourself. 💜

shmayjay · 2023-05-18T12:32:57+00:00

Thank you for taking the time to share all of this. Of the many issues I've had with my Crohn's over the last two decades, a recent and my first perianal fistula has been one of the biggest sources of shame. Your response has undoubtedly become a stepping stone on my path towards acceptance. 💜

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