Quality of Life Assessment from a Crohn’s Sufferer
Although I believe my crohn’s experiment was a step in the right direction for those of us who cannot truly understand the pain of the disease this description from our patient in response to my blog more accurately emphasizes our need for even greater understanding.
What many people fail to see and realize is that the trips to the bathroom are not the actual bad part. When you are experiencing an acid burn from frequent bowel movements that are soft or even pure liquid is a small part of this in a long line of embarrassing and depressing scenarios threw out an IBD patient’s day.
You experience pain when using the softest toilet paper or even the moist wipes that are now available. They are very helpful but they will still burn. On occasions, a SITZ Bath is necessary just to clean yourself and move on with whatever was interrupted earlier. There is an ointment called Nupercanial that is a God Send! This ointment has Dubicaine, which is not totally numbing the area, but definitely easing the pain from the acid burn.
Now if by chance you did not make it in time to the bathroom, you have to consider a shower and a change of clothing. It is not that a patient with IBD cannot wait; we cannot control the pure force of the urge. Imagine a shaken champagne bottle. The force of the pressure will build up only so much before the cork will blow and the liquid in the bottle begins to spray everywhere. This pressure and the loose bowel movements in combination will make an urgent and or messy situation.
If by chance, an IBD patient was cooking before this interruption. You will have soggy, burned, over boiled, etc… items you come back and deal with after you clean yourself up. Let us put ourselves in the grocery store. Through many cartons of melted ice cream, anyone can learn to choose all the non-perishable items first while shopping. Then make sure to know exactly where the bathrooms are located and if they are easily accessible.
One very important and surprising kicker with IBD is that you are never done when you think you are done. Most people who do not know about IBD do not realize that the IBD patient does not just have numerous runs to the bathroom. They also have frequent trips. You can be in that grocery store bathroom just finishing washing your hands and starting to walk out the women room door when, POW! You have to go again!
This is one of my embarrassing urgent trips while out at a public place.
My stepdaughter, son, and I had to go by Lowe’s to get something that my husband needed and as usual had forgotten himself. We are in this huge store looking for something when all of a sudden, I get this look, and my daughter says, “We will follow you and wait outside the restroom”. It is sad that my children know that when I have to go, everything else in the world must STOP so I can find the bathroom in time.
Imagine seeing a woman walking like a penguin quickly down the aisles and heading for the bathroom. As if no one will know, what my problem is at that moment. The closer I get to the bathrooms, which I would like to add are ALL THE WAY IN THE BACK OF THE STORE, my pace increases. I see the doors and run into the bathroom and into the first available stall. I breathe a sigh of relief that I made it and that I have not had another accident in public.
I sit and admire the pretty tile on the floor and the shoddy job putting it in, must have been one of their classes. A typical person is going to check to see if someone else is in the bathroom with me. This is where I will use some personal techniques to relieve myself and the other person in the stall next to me any embarrassment. Okay, mostly for me. There is the toilet paper muffler used to dull the sounds associated with expelling gas, there is the ever-important toilet seat gasket to keep me safe from previous messy users, and my personal favorite is the silencer. When you know you are going to have a bowel movement and you do not want to share the splashing noise associated with this or any type of void you can line the water with some paper to act as a catch net so you will not hear the sounds of nature at its finest. You can use these techniques alone or in combination. Never forget rule number one when it comes to bathroom etiquette, you can always offer a courtesy flush.
So I notice a set of feet next to me and I get into my rush strategy. I want to go and get it over with before the person next to me comes out and I have to face her when she just listened to me throw up from the wrong end. Well I push and force while using my techniques, wipe, get up and flush then wash my hands.
Phew! Another sigh deserved. I wash my hands and again I am thrown off by the pretty tile, I turn and grab some paper towels to dry my hands and leave. As I am throwing away my paper towels, the door opens. I look up and smile expecting to see my kids. NOPE! It is a man! He is standing there staring at me with this look of confusion and then looks at the sign on the door. He looks back at me, his eyes are telling me, “Um! You made a BIG mistake!” I shrug my shoulders, apologize, and walk out. Most of all NO, I am not embarrassed. I am happy I made it in time to the bathroom.
This was a single time trip, but imagine if I walked out of the men’s room and walked right back into the women’s room because the urge was there again. That too has happened and I will save that funny story for another blog. These situations go on forever and can put you in some serious physical pain while reading my moments of urgency. However, do you understand the frequency of the trip can also cause the drain of energy and depression? When your family comes to the bathroom to see you, you know you have an issue. Patient education, counseling, and support groups, there are not that many available. There is one in St. Louis and North Kansas City Hospital, which is at least 45 minutes to dive on a good day.
Basically, the point is that although your experiment was a really good try at understanding and IBD patients daily trials, no one can really know what we go through unless you go with us hand in hand and step by step seeing and doing everything we go through. The abdominal pain and cramping associated with the urgency to go. The nausea, flu like symptoms, depression, all the medications needed to try to reduce and ease the symptoms with IBD. The list goes on and on and the situations are sometimes beyond embarrassing. If I tried to sum up what an IBD patient goes threw in a day, we would need to write a book. Coming soon to your local bookstores. LOL There is nothing funnier than a joke.
~Toni Rinella, Guest blogger and Crohn’s sufferer
It is sad that my children know that when I have to go, everything else in the world must STOP
