Oops, sorry - um, do you have a toilet..?

[PixiGal]

Hello there everyone,
Firstly, thanks for a very practical and informative-in-the-useful-sense forum!
I have just registered, and very happy to have found this community.
I have LC, relatively recently diagnosed, which I believe has plagued me for much of my life due to the bowel symptoms I’ve had over the years.
Most noteworthy of late, is the immense superpower to shite anytime, anywhere, for any reason…
I have a mental log of prized memories that are the highlight reel, of which I’d like to share:
*Shitting the bed…in hospital. During the day. Visiting a friend. I was asked by a nurse if I’d like to go check myself in down at the emergency department. That seemed to illustrate how intense a moment it was when having to move the person I was visiting from their bed to change it because their visitor had shat all over it when sitting beside them.
*Getting pulled over by a very leisurely police officer when I needed to get to a toilet, and having to dive out the drivers door past him like a falcon swooping towards its prey, run around the passenger side, and commencing to unleash the loudest spattering series of sharts I’ve ever created in the outdoors, while he was frozen next to my open driver door, muttering incoherently - clearly in a state of olfactory shock.
*Teaching an anatomy class, reaching down to pick up my marker off the floor. My ass decided it couldn’t take the pressure and let out a dainty little stream of liquid stench as I was bending over. There was a series of shocked and disgusted reactions from my pupils, which silenced as I slowly stood up straight. I turned to them, and said “we will be moving on to the digestive system - it seems to be the theme for today…right after I go finish this clearly more urgent matter”. I then sent them on a break, opened a window, and went to the bathroom attempting not to make a very unique squelching sound with each step on the way.
*Standing in a line at a doctors office..I was feeling very quickly the urgent pressure to go, however when I turned to head towards the throne room, I pooed. The poo itself was silent, as liquid poo can be, however it was the stench that gave away the unwelcome visitor, and it was clear on all the faces that turned my way how disruptive that foul odour was. I waved and said “my colon is my worst enemy; clear a path for risk of collateral damage, thank you”.
*And of course, the always impressive waking up in a brown liquid that is coating your lower half and your bed, because you’re so exhausted from the previous days’ worth of significant throne-time.
Now, most of the time I must fast (NBM) from around 4pm the day before if I want to go out the next day, and only eat/drink when I get home. I’m on Budesonide however unable to taper due to the Return of the Random Most Frequent Sharts that revisits with a vengeance. Mesalazine/mesalamine hasn’t worked, and cholestyramine made my bowel bleed from some unknown region that didn’t have the decency to give me a break between BM’s.
The specialist is skipping to Entyvio after another colonoscopy soon…apparently it’s supposed to work better for someone with LC combined with the other lovely health challenges I have.
I’m so glad you guys have shared much info and personal stories here, and I’m looking forward to reading and learning much more about LC

[Marcia K]

Oh my goodness! What experiences you've had! I'm thankful that I really don't have any stories like yours to tell although I did have a few close calls at work. The gas was my worst issue & not knowing when it was going to make itself known. A friend recently commented about getting "walking farts" when she gets older. My response was - guilty! She has no idea! Glad you found our group. It's the best around for advice on your journey to healing.

[tex]

Hello Pixigal,

Welcome to the group. The issues caused by this disease can indeed be challenging at times. Hopefully, after reading some of the posts here, and working out the details of your recovery journey, you won't find yourself in any of the situations you described above, in the future.

Again, welcome aboard, and please feel free to ask anything.

Tex

[PixiGal]

Hey there Marcia K and tex, thanks for the messages.
It certainly had been quite the experience these last few decades…may as well have a dry sense of humour when dealing with the opposite kind of bowel
I’m looking forward to reading more posts regarding how people have managed with the least amount of interventions like medications, including using food, for instance (I’ve had very little luck so far with modified diets as advised by dieticians, and have mainly resorted to hydralyte and Nestle Resource when it’s mostly uncontrollable. I’ve seen a couple of posts regarding vitD and I think it was magnesium, which were very interesting…
Thanks again for the messages, and for tolerating my dry-humour approach to having the runs with such spontaneity
I mostly stay at home these days besides doctor appointments, so the hazard risk is much lower; the incidences I’ve mentioned are those golden moments that can be laughed about because they’re years in the past
The next step for me might be Entyvio, mentioned by the specialist last zoom appointment…colonoscopy first…which I’m willing to try as food elimination, diet modification and the like haven’t yet made a difference.
Coming off steroids would be great!

[tex]

I have no idea what kind of diet changes you've tried, but if you haven't totally eliminated gluten (including trace amounts) from your diet for at least eight weeks or more (with absolutely no cheating), together with eliminating chicken eggs, all dairy products, and all soy, soy derivatives, and legumes for at least a week or two (concurrently), you haven't given the diet a fair chance to control your MC symptoms. in order to stop the inflammation that causes the disease, we have to totally avoid every food that is causing our immune system to produce antibodies against it. Eliminating most of them will not bring remission — all of them have to be avoided, or the inflammation will be regenerated with every meal.

There's only one dietitian in the world who has the foggiest idea how to control MC symptoms by making diet changes, and she's a member of this board. Unfortunately, after she reached remission, she discovered that there was more money in marriage counseling than diet counseling, so she switched careers, and she hasn't posted here in years. All the other dietitians in the world try to treat MC patients with the information they've learned about Crohn's disease and ulcerative colitis, and those methods simply don't work for MC patients.

I hope this helps.

Tex

[Watercolorist]

PixiGal,

Your dry humor, your quick thinking, and your willingness to share your LC “Golden Moments” are greatly appreciated! Thank you!

I find myself becoming very reclusive, and recently only leave the house for quick errands. Even then, there must be, hopefully, a quick access to a toilet. Plus I take an extra set of clothing and supplies everywhere!

Recognizing living a reclusive life style is not in my best interest, I have been seeking advice from others on this site and fortunately am receiving it. Close friends are becoming concerned for me because they only know I have GI challenges, but they do not know the extent of the challenges. I’ve known them for only two years. In an attempt to maintain a sense of dignity for myself and out of respect for them by not sharing”too much information”, I am struggling to find the right balance for me and the situations.

Imagine a recent trip to the grocery store, less than 15 minutes from my home, and thinking my body would be calm. Upon entering the store I immediately needed to go to the restroom. Then imagine finding a long line in the women’s rest room in early to mid-morning. Fortunately everyone was waiting for the handicap stall. Out of urgent necessity, I entered the other stall and hoped I could get down on the toilet, obviously best suited for a pre-schooler, and back up again without having to summon help from an unknown person. Success. I felt a deep understanding for the woman in the handicap stall, being assisted by her daughter or friend as I heard them talk about the help the one person required.

PixiGal, I cherish and admire your openness and willingness to share, and your humor in handling the incidents themselves. Both valuable lessons for me.

Jeanne