I Hate IBD (Inflammatory Bowel Disease)

Advice for Parents of Children with IBD


Not only is it difficult for IBD patients, it can also be very hard for the relatives, especially the parent of someone with IBD.   Sometimes parents can feel racked with guilt.   It’s tough to feel like you can’t do anything to help your child feel better.  

There are however some things parents can do to help their child feel more at ease and comfortable.  The following are some simple things you can do.

No Fault


It can sometimes be extremely difficult as a parent to not feel guilty; it’s the parents job to keep your child safe and free from discomfort. The first thing to always remember is that it is nobody’s fault when someone gets an IBD.  There is nothing you or your child could have done to prevent this wretched disease.  Nothing you’ve let them eat, or not forced them to eat, would have mad any difference. 
  

Understanding


Probably the biggest thing you can offer your child is empathy.  They will most likely have periods of depression and the best thing you can do is just to be there for them and understand what they are going through.

There will be many trips to the restroom, sometimes dozens of times a day.  They have no control over the frequency of these trips;  encourage siblings to not make a big deal about it.

If you have more than one bathroom in your household designate one bathroom for them, preferably the one closest to their bedroom.  If this is not possible, every one in the house should be aware and ready to make the toilet available on a moments notice.  Many times the urgency strikes without warning.

Creature Comforts


With all the ‘quality’ time they’ll be forced to spend in the confines of a bathroom make sure it’s a well stocked library of their favorite books and magazines.  Maybe even a portable DVD player if the homework gets done.

Any one who has had an extended bout of diarrhea knows that your bum can become very sensitive.  Keep a container of baby wipes on hand for those times when even the softest toilet paper feels like sand paper.  If your son or daughter feels they are too old to be using baby wipes there are several manufacturers that produce wet wipes in a more adult packaging.  These can be found where you’ll find toilet tissue.

Restroom Scout

Restroom Scouting

IBD patients develop a sixth sense
for locating the nearest restroom.


One thing your and your child will become are restroom location experts.  When entering an unfamiliar place, keep an eye out for where the restrooms are located.  This could save valuable seconds when an emergency strikes.

Big chain stores like Wal-Mart and Target tend to locate their restrooms toward the front of the store.  Many are large enough to have a second set of restrooms in the back.  Department stores can be tricky, but one common location is on the highest level near the credit department where the employees enter and exit.

Be Prepared


It’s a good idea to carry around extra toilet tissue.  There will be times when you’ll find the public restrooms are out of toilet paper.  Gas stations and public parks are usually the worst, but even fine restaurants occasionally ‘can’t spare a square’.  

Traditional rolls are too large to conveniently carry around.  However, carrying around a roll that is about 4/5ths used up is considerably smaller.  Flatten the roll and store it in a zip lock bag.  There is also the option of purchasing camping toilet paper which is packed in fairly small roles.  

The best alternative might be prepackaged facial tissue.  One pack should be enough for even the most ‘eventful’ trip to the bathroom.  Best of all it is not the least bit noticeable since many people carry them around for other reasons.  

There will occasionally be times when accidents happen and your child won’t be able to make it to the bathroom in time.  A spare change of clothes kept in a small gym bag should be stored in the car at all times.  Just one pair of underwear and pants should do the trick.  Throw in some wet wipes and a gallon size zip-lock bag for storage of soiled clothes.

A small can of air freshener could also be carried in the car or backpack if your child is sensitive or embarrassed about the unavoidable order left behind. 

If you have a min-van, SUV, or any other vehicle on the larger size, a small portable chemical toilet can be kept in the back for those times when there isn’t enough time to pull over and find a toilet.  They can be found in the camping section of most of the larger sporting goods stores.

Diet


Although no food will cause IBD there may be foods that your child could be sensitive to especially during a flare up.  There are no specific foods to avoid, but it would be a good idea to keep a food journal of what your child is consuming, drinks included.  If it appears they are contiually having a reaction then eliminate that particular item.  Keep in mind it may not have been the food item that was the cause.  If they are in the middle of a flare up and experiencing a loss of appetite you do not want to remove a favorite comfort food if it’s not actually making things worse.

In general though, some people have issues with foods high in fiber, like nuts, popcorn, seeds, cabbage, broccoli, etc.  These foods can sometimes irritate an already angry intestine.

Some may have reactions to very greasy or fatty foods which may enhance diarrhea output. 

One suggestion is to spread out the consumption of food over 5 to 6 smaller meals instead of the traditional ‘big three’.  Sometimes this helps simply because the intestines have less material to process or become irritated by.

Make sure you child stays hydrated.  It’s an easy thing to forget when you are not in the mood to eat anything.  With cronic diarrhea hydration is even more important.  Beverages like Gatorade or any other sports drink that replenishes electrolytes are a good choice.

Medications


It can be difficult to keep track of their medications especially with multiple prescriptions taken 2 to 3 times per day.  Use a days-of-week pill box to organize your child’s medication.

When traveling, always keep your child’s medication in the original container.  Keep a list handy of all the medication they are currently taking.  This will come in handy if while on vacation a trip to an unfamiliar doctor is required and they ask for what medications they are on.

Informing Others


Leave it up to your child if they wish to inform friends or other family members about their condition.  Some people don’t mind sharing intimate details while others would prefer to keep such matters private.

You should however notify the school, or school nurse about your child’s condition.  There will be times when they’ll need to either stay home or leave school early and informing the school ahead of time will make things easier. 

Letting the school know should also put the kibosh on any harassment they might receive from teachers when they have to make multiple requests to use the restroom in one class period.  It may even be possible to negotiate with school officials for your child to carry a ‘permanent’ bathroom pass to avoid frequent classroom interruptions.