The concerns and trials of one girl with microscopic colitis

seeljanerun · Post by **seeljanerun** » Thu Aug 07, 2014 6:32 am

Questions:
- Where is the closest bathroom?
- If there is no bathroom, I’m not going because my anxiety about there not being a bathroom will require me to need a bathroom
- For my food/bowel movement log, does this count as one shi* or two if I haven’t left the bathroom yet?
- Does this have gluten in it?
- Are you sure?
- How sure are you sure about being sure?
- Will the chef hate me for my dietary requests enough to secretly gluten my food?
- Will the police officer judge me for having a pile of extra under wear in my glove compartment?
- Should I wear a maxi pad towards the rear of my underwear today?
- Was that a fart? Or….?
- Will the person sitting next to me on the airplane judge me because I get up to go to the bathroom 6 times? How about when I start gnawing on a lamb chop out of a plastic baggie?
- Was it the coffee or the almonds or the fact that I didn’t chew my food enough or the trauma of watching a baby elephant being devoured by lions on plant earth? What did it this time?
- When I have a baby, is there any possibility at all that I won’t shi* everywhere?
- Is constipation a thing?
- Is that my multivitamin floating in there? Why yes, it is…
- When will I have a normal bowel movement?!?

- Not buying white shorts or pants. Especially those for exercising. Because, who can take that risk?
- Having nice underwear but having it merely to admire, never to wear - one day...
- Being scared about the state of your hotel room toilet and the maid judging you. Cleaning it because you decide no one should have to deal with your shi* besides you ;)
- Not being a shy farter or pooper in public rest rooms. Hey, when you do this 10 + times a day, pretending you don’t have bodily functions gets old
- Having this on your amazon wish list: http://www.amazon.com/dp/B0045UB9GK/ref ... ZD6C&psc=1
- Becoming giddy about eating a salad the way dieters become giddy about eating a doughnut, but then, like dieters, regretting the decision moments or hours later
- Having a close to normal bowel movement and taking a picture of it because you are just so proud – look at my baby!
- Wanting to show this picture to everyone you meet but realizing (thankfully) that no one else shares in your excitement
- Secretly saving and cherishing said picture
- Upon entering a public restroom stall and seeing someone didn’t flush the toilet, not being upset but instead amazed and wistful: wow. That’s what a normal shi* looks like. I remember when I used to have those…
- Crying inside because you have to go to a 5 star restaurant with your loved one and eat a plain piece of meat
- Being willing to try almost any thing: acupuncture, meditation, weird glasses that flash to synchronize your brain waves, probiotics, amino acids, strange medical foods, eliminating enough foods that you are basically a breathatarian, overdosing on caffeine, giving up caffeine, giving up exercise, adding in exercise, deep breathing, drinking less water, drinking more water, hypnosis, magical prescription drugs with a laundry list of potential side effects, polarity, worrying less while still worrying about your ineptitude at worrying less, chewing slower, reciting positive affirmations, paying someone to follow you around to slap food you shouldn’t be eating out of your hands, low-fructose diet, low-histamine diet, low-insertanythinghere diet, a home fecal transplant….
- Taking everything in stride, because, as this issue has taught you, it could always be worse
- Wondering if it is ever going to get better <3

dfpowell · Post by **dfpowell** » Thu Aug 07, 2014 8:30 am

Your questions are right on target!

Gave me a good laugh

seeljanerun · Post by **seeljanerun** » Thu Aug 07, 2014 10:56 am

Good! I wrote it this morning while feeling particularly crappy ;) I thought some of my experiences might be relate-able!

JLH · Post by **JLH** » Thu Aug 07, 2014 11:38 am

darlagroat · Post by **darlagroat** » Thu Aug 07, 2014 12:50 pm

I can relate, and I found it to be funny and well written. Thank you!
Don't give up. This was me a year ago, and it is better now.
Hugs!

C.U.B. girl · Post by **C.U.B. girl** » Thu Aug 07, 2014 1:21 pm

Haha! Yes! Very well put, Jane! Only on this board could you find such an appreciative audience…..

seeljanerun · Post by **seeljanerun** » Thu Aug 07, 2014 2:42 pm

darlagroat, thank you for the encouragement; I'm doing the whole 2 steps forward, 1 step backwards dance, but at least I'm making progress in terms of solidifying my commitment to this process lol

seeljanerun · Post by **seeljanerun** » Thu Aug 07, 2014 2:43 pm

C.U.B. girl, thanks! yeah, I don't know anyone else in real life who can relate to any of this...I guess that is a good thing for them!

Lesley · Post by **Lesley** » Thu Aug 07, 2014 4:45 pm

solidifying my commitment

I can relate after nearly 4 years. I am still trying to "solidify" not just mi commitment, but my crap!

seeljanerun · Post by **seeljanerun** » Thu Aug 07, 2014 4:52 pm

Lesley, LOL agreed!

lisaw · Post by **lisaw** » Thu Aug 07, 2014 6:30 pm

Jane, questions and concerns many of us have had

!

Polly · Post by **Polly** » Thu Aug 07, 2014 7:20 pm

Jane,

Very clever and on target! Thanks for taking the time to write down your experiences, which are common to almost all of us in this PP family.

I especially loved the one third from the bottom - being willing to try almost anything. I was laughing out loud!

Love,

Polly

P.S. And it WILL get better.......I promise.

nerdhume · Post by **nerdhume** » Fri Aug 08, 2014 4:43 am

some of that gave me a laugh, all of us can relate. It did make me feel somehow blessed that I didn't have these problems when I was in my 20's and having babies. I can tell you at age 62 it has definitely interfered with my sex life. I am just now getting my life back. Wearing diapers is NOT sexy to him or me!
Of all the things this disease takes away the self respect is the worst IMO.

JFR · Post by **JFR** » Fri Aug 08, 2014 4:54 am

Jane - Perfect questions, great list. Now I want that bidet. Your sense of humor should be a major help to you on this journey. Most of this is not funny at the time but to be able to laugh at it even in retrospect is a great boon. Don't worry about pooping during child birth. It's a pretty messy experience. Any and all mess is expected. When and if the time comes worry more about what they will feed you in the hospital after it's over and be prepared.

Jean

seeljanerun · Post by **seeljanerun** » Fri Aug 08, 2014 7:12 am

Thanks all :) I know there is a quote out there that goes something like, when you're not laughing, you're crying? or maybe I made that up. In any case, I kind of feel that way. I try to stay lighthearted, even though I am a natural worrier.

Jean,
I went to Tokyo (my husband's dream) for my honeymoon, and toilets were either a hole in the ground that you squatted over (thankfully, did not encounter too many of these!), or these high-tech toilets that had seat warmers, bidets, and would even make an electronic flushing sound to cover the sound of your bodily functions (many of the Japanese are socially conscious). I just loved them, and with how much time I spend in the bathroom, I feel like I deserve one, haha. And, about the hospital food - that is a really good point. I will have to make sure packed, safe meals are part of my birthing plan.

Theresa,
In a sense, it does suck to have to deal with this as a younger person; I started having chronic diarrhea at age 18. But, in some ways, it is a blessing. It has taught me already that I need to find a sense of balance in life, that no good can come from constantly pushing yourself through stressful situations. It has also made me much more aware about what I eat: food quality, organic food, different types of diets, how toxic our processed food system is, etc. It has alerted me to the sham that is our prescription drug system - i.e. how most of Americans are taught to blindly accept a system of taking a pill for our ailments, with a myriad of toxic side effects, and not even question lifestyle or how they got to needing a pill in the first place. And, perhaps most importantly, it has furthered my compassion for everyone. You never know what someone is going through. I think it would have taken me a lot longer to figure these things out if I didn't have mc.

But, then again, having kids - I told myself we wouldn't try until I am healthy, or I guess at least until I achieve a somewhat consistent period of remission. It worries me that I am not absorbing all of my nutrients, and I have heard of research that mothers pass their gut flora on to their babies. And, even beyond producing a healthy child, I worry about not having enough energy to keep up. Most days, I feel like I have enough energy to get through the "have-to's", and some days, not even that - and I barely have any responsibilities. I want to be a mom who is as present as possible with her kids. In short, I don't want to spend 80% of their childhood on the toilet or in bed, haha.

& yes, it does put a damper on our sex life. I feel like half the time I don't feel like having sex because my stomach is bloated or grumbling or I am just totally drained. I also feel like chronic diarrhea messes with your hormones, which probably contributes to my lack of desire. Thankfully, my husband has a good sense of humor about all the poop in our lives, haha. He is very supportive and encouraging, even in moments when I shi* the bed in the middle of the night :( I haven't gotten to the diaper point, but that's not saying I haven't needed it some days; I think I am just stubborn in not wanting to go and buy them and thus admitting aloud "I am 25 and I need diapers" :( In any case, Theresa, I am glad that things are improving for you!!