Living with IBD

Recently I was diagnosed with IBD (inflammatory bowel disease). So this is my road to not recovery but to understanding and learning to accept that I will have to cope and work with this for the rest of my life. This is a blog of my view, opinions, recent news on IBD and helpful hints if I find any. You will find some of my blogs may be quite witty and they are not meant to offend anyone in anyway. My way of living life is basically laughter is the best medicine but I find I do have my days of totally “losing it” with tons of tears. When the doctors ask me how I am doing, when I jokingly reply “shitty” I literally mean it. Please feel free to share your thoughts.

Sunday, June 19, 2011

Shit or get off the Pot


Lately, I have been analyzing my life. Life with IBD is really “shitty.” I do not go anywhere, if I do I get embarrassed and to make a long story short I miss out on life’s offerings. Missing out has caused lots of tears, depressing, anger and feeling sorry for myself.

Adapting, to home life in the beginning was not easy for my active self. It meant no longer working because they could not quite figure out what was wrong with me and even to this day IBD is a term used loosely. IBD has not been controlled except by steroids. All the drugs they give for IBD I had an allergy to. So steroids helped but they severely depleted my Vitamin D and Calcium levels and I ended up with a few broken bones. So that in turned made me very extreme depressed, plus the healing time from the broken bones was longer. So I got even more upsest at my disease and then that anger turned to feeling sorry for me which lead to a deeper depression.

I would sleep for days without getting up. I would beg my doctor to put me in a mental institution. My feelings were I didn’t want to hurt anyone but I didn’t want to be here. I wanted to run away and I had no place to go. I was a prisoner in my own house. So because I wasn’t going to hurt anyone they prescribed depression medications and psychotherapy.

It did help somewhat but it did not take care of the problem. I had days where I could finally pull myself out of bed and take a shower. Then that led to wandering around the house looking for things to do. After a while I decided this is something I need to live with so I might as well make the best of it. The things that seemed to help were journaling, drawing, painting and relaxation music.

Well let’s say lately I have been getting bored of that and am tired of missing out on life’s pleasures. We are only on this earth once so either “shit or get off the pot!” I decided to get off the pot.

To be continued……..


Shit or get off the pot meaning: An old expression that means to do what you are putting off.

Friday, June 10, 2011

Under or over? Does it really matter?

If you have FaceBook please participate in my poll. So far I have 80 responses and hope to get at least 100. These are the things I think of as I spend so much time in the bathroom. :) ~Kay




Just click the Under and Over.

Under or Over





Signed up with a new IBD Forum and Help with FaceBook group

Today I signed up with a new IBD forum in hopes of finding more information about the disease I have and some tips on how to cope. I also help administor a new group on FaceBook which has already proven to give a wealth of information so I encourage you to check out the group. Below is the links to both and I will be updating this page more frequently so please check back often.
~Kay

Crohns Disease Forum

IBD or know as Inflammatory Bowel Disease


Thursday, May 26, 2011

Tuesday, May 24, 2011

More Crohn humor

This is so close to home and applies to me. I bet it does for so many of you. Be prepared to laugh.

You know you have UC or Crohn’s when:

1.)When you travel, your meds have their own suitcase.

2.)At the superbowl party, you won the prize for ' most wicked fart' and you were just setting out the dip.

3.)You were thrilled to have had 'only' 5 bm's today.

4.)You think 'poo fishing' is perfectly sensible.

5.)you carry a spare pair of undies with you everywhere you go


6.)you've stopped to crap on the side of the road with your inlaws in the car

7.)you wonder how much crap can come out of one person!

8.)you're happy when you have a big loud burp because you're thankful it's not coming out the other end!

9.)One BM per day makes you want to stand up and shout "hip hip hooray!"

10.)Everyone is your GI's office knows your name without looking on the chart or the sign in sheet.

11.)The Lab techs tell you that they are going to name their next lab machine in honor of their best customer.

12.)You call your insurance company and their Customer service rep pauses....and then says that you've got a lot of claims so this might take a while.

13.)Your Morning workout is a Sprint to the bathroom

14.)You have 3 different sizes of the same clothes.

15.)You are in Remission and just appreciate the little things in life that you overlooked before you had UC or Crohn’s.

16.)You know every bathroom where you work, and everyone knows where you are headed when you say...."I'll be right back" with a funny look on your face.

17.)Your colon gurgles and its so loud that everyone around you asks if you are hungry.

18.)Truck stop bathrooms don't even Phase you.

19.)You know where the bathroom is everywhere you go

20.)You have your GI on speed dial

21.)When you carry your own toilet paper.

22.)When you bring your own food for just you to a holiday party

23.)When your friends keep asking you "Can you eat this?"

24.)When you look at every ingredient on everything you eat

25.)When you're always the designated driver

26.)When you keep all your books in the bathroom next to the toilet

27.)When you think you should buy stock in wet wipes

28.)When you order three months of meds and they come in a box so big your neighbors think you got a new TV.

29.)You are the youngest patient in your Gi's office.

30.)Your GP runs because he thinks you are a hypocondriac. He then gives you a free flu shot because he is tired of referrels.

31.)You count your movements...

32.)You regularly stock the bathroom with extra rolls of Toilet paper

33.)If you read all of these posts and laugh because they sound "just like you"....

34.)You are better at describing the intricacies of poo than wine.

35.)The word stool NEVER refers to something to sit or stand on.

36.)You wonder if that's really going to be a fart.

37.)You can say, "It's not the colonoscopy that's bad, it's the PREP!"

38.)Your Dr. says "how many times are you going?" and never "turn your head and cough

39.)when you buy TP in bulk and the cashier thinks it's because you run a day care center.

40.)You have read every magazine or paper in your bathroom so many times, that you start reading the ingredient lists on toothpaste, gel, shampoo and anything else you can get your hands on without getting off the toilet........

41.)Talking about your BMs normally happens at dinner

42.)You have a standard answer when anyone asks, "What's UC or Crohn’s?"

43.)You go to pick up the *evil* Prep at the pharmacy and the pharmacist, who is about your age, says, "I'm sorry."

44.)You can tell your parents that a colonscopy isn't a big deal.

45.)You are on a first name basis with your GI.

46.)you start to furnish your bathroom

47.) you're thankful big purses are in style so you can carry your pill organizer with you.

48.)when your kid knows to ask you if you're going No 1 or No 2 so he knows how long he has to wait for you.

49.)when you get SICK of people asking you "How are you feeling?".

50.)when you go to your son's basketball game and a parent comes up to ask if you want a chair to sit on so you don't have to sit on the bleachers because they are so hard.

51.)you undue your belt and zipper before you even enter the bathroom.

52.)you go house or apartment hunting and you are only interested in the number and location of bathrooms.

53.)You have a pill count contest with your grandmother

54.)When you go to the pharmacy and they greet you by your first name and they know which prescriptions you want filled without looking in the computer.

55.)When you go to your MIL's house for dinner and she sets aside a special onion/veggie free dish just for you.

56.)When you tell your kids that you're not feeling well today and they know what you're talking about.

57.)When seeing blood is no longer a cause for concern.

58.)you go to the drugstore and the pharmacist looks at you and says "oh only one prescription to refill today."

59.)you have used the bathroom in every McDonalds, gas station and fast food restaurant in a 10 mile radius of your house

60.)you can talk about poop all day and not flinch

61.)you don't go out of the house for long periods of time w/out a massive bottle of imodium just in case

62.)your friends ask you in hushed voices how that stomach thing is going

63.)you keep a detailed journal about what you ate and how it came out

64.)you never leave the house without 2 diaper bags stocked with wipes and a change of clothes... one for the baby and one for you!

65.)you have supplies in the car for "just in case"

66.)you have your bad days... very bad, and you have your good days, but you can keep a sense of humor thru it all and still laugh about poo. :)

67.)You close the windows in summer when using the washroom so as not to disturb the neighbours.......:)

68.)You're allowed to get up from your work station ten times a day, no questions asked and if they are asked.. that person regrets it.

69.)In your 1 bed 1 bath home, you always win the race to the bathroom, no matter what.

70.)People who manage a glimpse into your purse give you strange looks, assuming you're addicted to pills, close friends make sure you remember those pills.

71.)your morning stretches consist of bending over to examine your poo.

72.)If you've ever rushed to a public bathroom only to find each stall occupied, turned around, gone through the door across the hall into the ladies' bathroom and whooshing past a few shocked women on your way to the most beautiful and inviting toilet your eyes have ever beheld.



Crohn's/UC Jokes from ImproveCareNow

Thursday, April 14, 2011

More about Crohns

Yes, humor can be the best medicine. I found some more proof and with their permission here is the link.

Wednesday, February 23, 2011

Heading to Canada - Wish me luck.

Tomorrow morning we will be leaving to visit my daughter at school in Canada. If you read my last blog you will find that travel was a disaster. Even though I will prepare seems like something always goes wrong. My emergency kit has been packed.

It is a long trip that will be so well worth it because we do not see her often. The Canadian school schedule is quite different from ours. For instance, they do not have the Thanksgiving break in November. They have a few days off in October. (Or maybe just one day) It is not long enough to put Lydia on the bus, eat dinner and send her back before school starts again. We did get to see her over Christmas break. Now she is on a reading break for one week so we decided to visit her.

It will be over an 8 hour drive so I will be mapping bathrooms today. Plus, I have my kit in hand so I am all set barring any accidents. So if you will excuse me I have my homework to do. People write reviews on restaurants think I will start writing them on bathrooms.

In the meantime, before I come back please answer the following question in the comments. Is the toilet paper suppose to go on the roll under or over and if so why?

Have a great weekend.
~Kay

Thursday, February 10, 2011

Pet Peeve of the Week

Warning: Do not read this if you have a weak stomach.

We were recently on a flight from Fort Lauderdale to Manchester with a layover in Philly. I am not sure why I had a flare up other than maybe I ate something I shouldn’t have. Flare ups seem to be more of a mystery with me. Anyways, I just remember as the plane was landing into Philly a terrible cramping doubled me over. It seemed like forever getting off the plane and thankfully the bathroom was right there. So I told my husband I was going in to die and I would be back as soon as I could. A while later, I emerged from the hole of the dead and off we went to find our next gate where we had a 2 hour layover. Less than 5 minutes later the urgency returned and I rushed to the bathroom. The first stall opened and as I run in I am already pulling down my pants and as I sit on the toilet the dreaded thing happened. I sat on a toilet seat soaked in pee. It was too late now because there was no way I could stand because I was dying again. So I had to sit there and gag with dry heaves because of the thought. Totally unprepared, that was when I thought there has to be a better way. There will be a better way, I can promise you that.

For those of you that have not had this urgency the ones that have will agree with me that there is absolutely no time to look at the seat or even wipe it off.






Monday, January 3, 2011

Energy, you may wake up now.

This morning I was waiting for my energy to wake up. It finally did around 11 am for about one hour which allowed me to almost completely clean the bathroom even behind the vanity. Then I crashed and napped for 2 ½ hours.
My new diet does not consist of coffee so that was out this morning. The plain chicken and rice in broth that I had didn’t taste half bad for breakfast. Thankfully, I only have to do the chicken and rice for 3 days and if I am feeling well I can add another food to my diet. The choices would be pears or green beans. That will be a tough one. Not sure but I think the pears will win out.
It was a fairly productive day. The bathroom was eventually finished and I started on the bedroom. Then there were lots of paperwork for my disability insurance. The rest will have to wait until tomorrow. The amount of paperwork they give you is ridiculous and most of it is redundant. My only hope is that they will find some help for my colitis because I hate staying home.
That being said I will continue with the paper work, housework and learn to deal with this “parasite” sort of disease that I have. Hoping that in a few days my energy will come back to play.

Energy, you may wake up now.

Sunday, January 2, 2011

January 2, 2011 – Starting a new regimen

Today is the day to prepare for this week. The chicken is going in the crock pot and rice will be boiled. Oh joy. Chicken and rice will be eaten morning, noon and night for the next week. Meds will be weaned. It is time to start over and see if giving my body a rest will help with this IBD. This is not doctor’s orders, but my own.

All these meds, a list of 23 to be exact, I believe has really done a number on my stomach. Seems like all they (doctors) do is treat the symptoms because they cannot treat the problem. This is not to put blame on the doctor’s. My body does not respond to the typical IBD treatment and I am allergic to most.

So I have vowed to at least give this a try as a one of my New Year’s resolutions. At least I have nothing to lose and I am remaining on the positive side that this will help. Food dairy here I come. Wish me luck. :)

~Kay