New, Frustrated & Distraught

[Bketler1]

Please forgive me guys but I have another question .....

So yesterday I missed the first 2 innings of my son's game. A very important game. If we won we would be the number one team in the state and be the number one seed for playoffs and have home field advantage and so on. I was there early, game was 45 mins away and I rushed out of work but I made it. I get to the parking lot and it hits ... I need a bathroom ... now ...
I am panicked, the field only has a port a potty and it isn't close to the parking lot and I'll have to clean it before I can even use it! There is a Marriott close by but I'm afraid they'll tell me I can't use the restroom and I may not make it back to the car. I was freaking out. I had no extra clothes with me in case of the worst and I was starting to really make myself sick over it. So long story short I made it to a bathroom and missed the beginning of the game.

Now the question ... did I read somewhere that we can get a medical card or something that makes it so establishments cannot turn us away if we need a restroom?? I've been reading so much I thought I may have seen that (or maybe I dreamt it lol) and if it is true I really want one. I was a mess yesterday by the time I made it to the field. And of course my ex always enjoys making light of the fact that I am late. Gotta love that lol.

Any info would be much appreciated!

[tex]

Becky,

These cards were all the rage soon after the Restroom Access Act (aka Ally's Law) was passed back in 2005, but these days they are not as easy to obtain. None of the old links that were originally posted on this forum still work. I finally tracked down a way to get a card by signing up as a member of the Crohn's and Colitis Foundation, but guess what? Signing up to receive a card comes with this caveat listed below the card image on their website:

Note: Eligibility restricted to patients diagnosed with Crohn's disease or Ulcerative Colitis.

I reckon that shows how much the CCFA respects MC and MC patients.

Cimzia, an anti-inflammatory drug used for Crohn's disease offers a PDF of a card that can be printed and cut out, but it too specifies that the carrier of the card has Crohn's disease, and the wording of the card itself leaves a lot to be desired, IMO.

The fact that no support site offers a Restroom Access Act card suitable for MC patients makes it painfully clear that we have to develop one ourselves. I'll design one and post it on the Microscopic Colitis Foundation website and on this forum as soon as I have it available to download (for printing).

In addition, I'll discuss this with the other MCF board members before implementing the next step, but I have a hunch that we will want to offer a durable, laminated Restroom Act card sent free of charge to registrants who sign up for the Microscopic Colitis Foundation Newsletter. Again, I'll post an update if/when this happens. Part of this project will require finding donors willing to help pay for the supplies and postage necessary to carry this out, because I have a hunch that it will be a popular item.

The catch is that this is a state law, not a federal law, and as far as I am aware, only 16 states have adopted it. Regulations vary by state of course, but the basic premise is the same, to encourage businesses to allow IBD patients to use their restroom when an urgent need occurs. Ally's Law falls under the American's With Disabilities Act, and as I described in the book, the ADA does apply to MC (for purposes of disability claims or whatever).

States that currently recognize Ally’s Law include:

Colorado
Connecticut
Delaware
Illinois
Kentucky
Maine
Maryland
Massachusetts
Michigan
Minnesota
Ohio
Oregon
Tennessee
Texas
Washington
Wisconsin

If anyone knows of any other states that have adopted a form of this law, please let me know.

I'm sorry that I couldn't find an existing source for a card, but I will promptly remedy that situation.

Tex

[Gabes-Apg]

Becky
tough day, and the stress would not be helping things either..

another option - please consider using diapers. There is no shame in it for us.
Hey astronauts wear them alot of the time, it is a necessary part of the job for them.

When i had to travel for work, (air travel, domestically and internationally) I had outfits that hid the diaper, and for piece of mind and to reduce stress I would wear the diaper when on the plane. I would also minimise my food intake the day before to also reduce poop load.
that way if there was any BM urgency at a time that the seatbelt sign was on, i had a plan B.

Even to this day I still have spare pants, undies and clean up kit in my car. My handbag has spare undies and full pack of wipes spare liners.
I wear liners every day.

[Bketler1]

It's def to that point Gabes. I'm so humiliated. This is insane. I've been insecure my whole life about a whole slew of other health issues but this just adds to my anxiety.
The other day a coworker pointed out that I was sweating - I have a weird sweating issue too - she did so in front of a client. I asked her if there was anything else she'd like to embarrass me about in front of clients. I can usually keep that kind of comment to myself but I'm at my whit's end.
I was trying to give the Budesonide time to work but I guess I'll be calling the GI doc. I can't eat any less or more bland. I'm afraid I'm going to embarrass my kids. They are all teenagers and go to a prestigious private school. I can only imagine what they'd go through if I were to have an "accident" at the school or the fields.
I've been up since before 5 am in the bathroom this morning. I don't have to get up til 7. I'm starting to wear out ...

[tex]

Hi Becky,

Yes, the early morning bathroom routine is typical when MC is active. Hopefully you will soon have that behind you as your healing progresses.

Your abnormal sweating is probably also due to magnesium deficiency. I sweated profusely when I was magnesium deficient. The body can't properly regulate it's temperature when the blood magnesium level is too low.

At least it's Friday today. Maybe you can catch up on some rest over the weekend. Remember that you cannot do what you were previously capable of doing while your MC is active and you are recovering. Fighting the inflammation takes all the energy our body can muster, so we have to give it a break by lightening up our scheduled activities and not pushing it so hard.

There's not much we can do to make our work easier if we have a 9-to-5, so we have to find ways to cut ourselves some slack at home. You may not look sick, but you are very ill. Your family needs to understand that. MC is a serious disease, and it can be debilitating until we get the symptoms under control. Healing requires rest.

After you are in remission then you can become superwoman again.

Tex

[gac]

Becky, I am now retired (thank goodness!!!) but I remember the days when I was trying to work and spent far more time in the bathroom than at my desk. My biggest fear was not making it to the bathroom from my desk. For a long time I didn't know what was wrong, then began treating it as gluten problem only (no help from my doctor at all). But my supervisor actually said to me, "Maybe it is time for you to retire, you are too old to work or too sick to work." I was 62 at the time. A supervisor cannot say things like that to an employee but HR wouldn't back me up on it. I finally went out on medical leave prior to retiring early, just so I could keep my COBRA benefits until Medicare.

But the stress of work was making me sicker. And now that I can just "be" at home, maybe things can get better. It has not been easy as I was just diagnosed last summer with MC and have had some really severe times, one that put me in the hospital. But I try so hard not to get upset, not to get involved in anything that can upset me. It must be so difficult with kids. And even more difficult when you are cooking for a family because you can't touch their food.

I have had autoimmune issues for 15 years and am super ridiculous about washing my hands, keeping my food separate from my daughters, taking my medications, etc. But it still isn't easy. And it still gets depressing. Because when I least expect it and for no apparent reason, the diarrhea starts again, even though my diet is so limited. I am still trying to find that "perfect daily diet" for me. Maybe I never will.

[Gabes-Apg]

Becky
Tex makes a very valid point

There's not much we can do to make our work easier if we have a 9-to-5, so we have to find ways to cut ourselves some slack at home. You may not look sick, but you are very ill. Your family needs to understand that. MC is a serious disease, and it can be debilitating until we get the symptoms under control. Healing requires rest.

the ongoing anxiety, the changes you are making with diet, supps etc your body cant keep up with what your mind wants to do. the ongoing symptoms are indicators of chronic inflammation. you will have limited scope of success of healing if you continue the timetable you were doing 12 months ago. I had hoped with the various discussions of the past week you would see this yourself and slow down.

it is not failure or shameful to put your own needs first... we have to learn to do that guilt free. you nurturing your body, giving it the elements it needs to heal, will help not just you but your whole family in the long term.
IMO reducing pressure/stress that makes the anxiety is more important than the diet changes..

[Bketler1]

I think the thing that is the most stressful is being fearful that I won't make it to the bathroom.

I don't work a regular desk job...it's customer service oriented so I have to be available at a front desk type environment and if I'm missing a lot it's noticeable. Plus when I'm with a client I can't just run away lol. And when I'm not at work of course I'm at a baseball field or on my way to a field that could be an hour or two away. Then the field may not even have a bathroom or port a potty.

I do keep a crazy, busy schedule. And with my kids being in private school I can't really afford to take off work. The only blessing to the rain right now is that I am staying in bed and resting every minute I can.

I'm already tired of chicken and rice lol

[gac]

Becky, I worked customer service but I was on the phone non-stop for 8 hours a day and if I left my desk for any reason, it was counted against me, I mean SCORED against me. When the D was so bad and I was sitting in the bathroom having the worst of spasms that reminded me of when you throw up and have dry heaves (I called them dry heaves of my intestines), I couldn't leave the bathroom. I'd sit and sit and sit, and the sweat would run off of me and in cold sweat and I'd be shaking all over. After about 30 minutes, I'd stagger back to my desk and in about 15 minutes, it would start again. I had no idea what was causing it and nothing would stop it. And they would threaten my job and that would make the stress worse. I took a medical leave of absence and that helped. Maybe you could do that. Although I know the income you make is needed for your kids private school but something has got to change because of your health. And this isn't a short-term change, this is a long term change as you have no idea how long you are going to be like this.

I have been eating the "right foods" (or so I think), taking my meds, trying to stay calm, taking my vitamins, etc. and still the Big D will hit me and I will have days/weeks where I am in the bathroom 12 to 20 times a day. It has been 10 months since I was diagnosed with MC, 6 years since I started eating GF, but only 10 months DF and the other stuff and still my intestines are all screwed up. Maybe I will be like this for a long time. Maybe I will always have to wear a diaper when I leave home. Maybe I will always be afraid I won't make it to a public restroom. But I absolutely will not go anywhere that there is not a restroom nearby and I always ask before I go and when I arrive where the restroom is (even at a restaurant) so that I can make the mad-dash if I have to. I do not travel, no vacations, no trips. I seldom go out to eat. I don't go anywhere right now. I've managed to go to a few Broadway productions here in Atlanta but I know that path to the bathroom and will knock anyone down who gets in my way.

I'm glad I could retire early, not that I could afford to do that because I couldn't. I moved in with my daughter and I live with her and she helps me. I live on Social Security. But I couldn't work any more for as sick as I was. And something had to change. It was after I retired that I got even sicker and ended up in the hospital and was diagnosed with MC. So this isn't the life I had planned for my retirement and that makes me sad. And my diet is so restricted right now as I struggle to find what very few things I can eat that don't make me sick and give my intestines time to heal. And I am so thankful for this group of people who support all of us and answer our questions and offer suggestions to help us get thru one day at a time. Hang in there. They tell each of us it will get better and I sure hope it does.

[WWWB]

I'm so sorry you've been struggling Becky but welcome to the board. It has taken me about 2 years after my diagnosis to really understand the importance of a strict diet. I've been yo-yoing between various drugs prescribed by my Gastro but I always have flare ups. I am finishing a round of budesonide after 2 months of straight out of control D (extra set of clothes in my car and at work). It's pathetic but one of my consolations is that my work colleague has MC too. We joke that it's a requirement of our job. So the running out to the bathroom doesn't feel quite so humiliating. But now my focus is on the diet. For 2 months I have pretty much eaten only jasmine rice and ground turkey, literally 3 meals a day. I've slowly added some safe foods based on my Enterolab results (GF, DF, SF). The soy is really insidious - I swear it is in EVERYTHING. And I now take Vit D, B-12, magnesium. I am finally stable but I know that may change once I come off the budesonide and so I will have to become super sleuth again to tweak my diet. Good luck, keep reading this forum, keep asking questions. This is a really wonderful group of supportive people.
Weezie

[gac]

I haven't had the testing done yet and your talks about soy scare me into thinking that could be something else that sets me off although where it could be? Who knows. I found it in vitamins so quit those and the D stopped for this week. Yes my diet is boring but I'll take boring over diarrhea. I used to long for foods, miss them so much. Now I can watch the Food Network and not even get excited over what I see and so many foods I see just turn my stomach. I guess that is progress. I remember at first I thought about just eating something I craved and suffering thru the diarrhea but that was when I was just newly gluten free. Now since the MC diagnosis, I'd never think about doing that as I'd have to live thru months of regret for just one doughnut.

Live and learn! It does get easier with time and I've found real pleasure in some good gluten free foods.

[Bketler1]

So this weekend wasn't much better than last weekend lol - lots more crying. Truth be told May is a tough month for me. I lost a friend a couple of years ago to Cystic Fibrosis and her birthday is this month and the CF walk and her brother is having a baby this month that is due on her birthday. Tons more in my life, truth be told I could write a top selling book or even make a hit movie. I've been in and out of hospitals since I was 2 yrs old, have a host of health issues, lost the love of my life to a motorcycle accident many years ago then to top it off my ex bestie is married to my ex husband. I have had one hell of a life for only being 42 lol. Is there a producer in the group, maybe we could make some money???
I have work 4 days this week, 2 doctor appts on my day off, 4 baseball games Monday through Friday so far, at least 2 double headers this weekend, probably at least 1 more game for the high schooler this weekend. D-Mannose seems to have cleared UTI thank goodness.
Anyway ... D has been better believe it or not but I am super gassy. Wth did it come from?? Haven't had this problem in a while. I'm a bit confused by this new annoying problem. I find myself running to the bathroom when it's just gas but I'm scared it will be something else!
Been having a protein shake, 2 rice cakes and a fruit cup/no sugar added for breakfast every morning. Lunch and dinner are chicken w/ rice and either asparagus, spinach or green beans.
Any suggestions on what I can take for gas?

[tex]

Anyway ... D has been better believe it or not but I am super gassy. Wth did it come from?? Haven't had this problem in a while. I'm a bit confused by this new annoying problem. I find myself running to the bathroom when it's just gas but I'm scared it will be something else!

Believe it or not, the gas is probably a good sign. When you go to the bathroom and only pass gas you are healing. You may still have a way to go to get to remission, but you are making progress and that's what this game is all about. There are 2 noteworthy quotes associated with recovery. The day is not too far away when you will be able to, as another member put it (pardon the crude expression) . . . "Fart With Confidence". And on the long and difficult journey to remission from MC, "Happiness is a dry fart!"

Gas comes from the fermentation (by gut bacteria) of the byproducts of the incomplete digestion of carbs, probably the vegetables you are eating (assuming that the gas follows lunch and dinner, rather than breakfast). Some members have posted that products such as Beano, which I believe contains the active ingredient simethicone, help to reduce gas problems.

Tex

[brandy]

Tex is right, when you don't have liquid D and only have gas (that you think is D) you are improving. Yea!

[gac]

I noticed you talked about sinus infections and I have fought those for years until I started using salt water spray in my nose. If you will spray salt water in your nose a lot, I mean constantly, it will clear up sinus infections. It may not be the most pleasant thing to do but it won't hurt you in any way and buy the big spray bottles and become a fanatic about it. My grandfather survived the 1918 Influenza Epidemic by snorting saltwater up his nose and just swore that it kept him from getting sick when everyone else was so very ill. He did it all of his life. I had sinus surgery about 15 years ago and it was recommended to me to prevent any future problems and I have continued to do it.

Eating a boring diet (no fruits/veg/juice, no prepared foods, no lunch meat, nothing from a box or can, only what I make myself, never eating out) is worth it to me after all the time I've spent in the bathroom in the past 10 months. These 10 months have been very hard and I still struggle every day, every week. I still do not think it is "normal" to have 6 to 8 BM's in a day but it is so much better than 12 to 20. I have not left my house in 3 weeks because I do not have enough advance notice to get to the bathroom. But this past week was better than the week before. But my food is super boring. I have eaten mashed potatoes and chopped chicken every night for dinner for the past week.

I saw Tex note about magnesium and fibro and I hope he is right as I have struggled for years about that. I don't hurt as much as I once did, that is true, so maybe the magnesium is helping.