“Worst case scenario”

In my last post I mentioned about getting an operation being the worst case scenario. This is always what my IBD team has said to me when I have a scope done or they change my medication. I have many friends who suffer from Crohn’s and Colitis who have had to have a stoma either an ileostomy or a colostomy. The majority of my friends have never said it is the worst case scenario as they have got their life back. The only thing they have to worry about is the bag popping off and soiling their clothes which is rare if you have a bag that suits you and you use all the special seals and bonds to keep the bag stuck to your skin. Or the bag fills up too quick that they need to run and find a toilet to empty their bag. 

I am in the middle of the biggest flare up since I was diagnosed in April 2013. I have been late once to work because I needed to go toilet yet again before I left the house then got stuck in heavy traffic behind a road traffic accident on the way I go to work. I have also soiled myself on the way to work too which I am not happy about but I was prepared that day as I was carrying a spare change of work clothes. Now this is what the IBD teams should be saying is the worst case scenario not getting a life changing operation.

I have come up with five of the worst case scenarios for anyone with IBD.

1.  NO toilet paper …this is definitely number one as it is the worst scenario you can have happen. If you are at home you might have a massive stash of toilet paper in the house but what if you run out completely or you are using a public toilet and there is no toilet paper at all in the cubicle. A massive issue is at hand how are you going to wipe your bum

2.  NO toilets … either the establishment has no toilet or there is a queue of other customers waiting to use the toilet. Either way if you are needing the toilet urgently it is going to end in an accident.

3.  Dirty toilets … from making a mess yourself and having to clean it up before the next user or the previous person did not clean it before they left and there has been no toilet checks for a while by the cleaning staff it can be a horrible task to clean the toilet really quickly if you are in a rush out and about or even just at a friend’s house.

4.  Clogged toilet … this is a really common thing to happen to anyone. The best way to prevent this from happening is to flush the toilet after you have finished doing your business then after you have finished wiping. If the toilet water do not go down do not flush again as it is a sign that the toilet will overflow as it is clogged up already.

5.  Bathroom accident … this can happen to anyone of us as it can just come on all of a sudden that we need to run to the toilet and we cannot always get there on time to use the bathroom. If you do not have an emergency kit already it is worth the 10minutes or so to put one together with spare underwear, wipes, gloves and other bits and pieces you might need to use if you have an accident. If you look further down my blog I have a post regarding emergency kits. Mine is usually with me and I have one also for my little girl as she is no longer in nappies and so far it has only been mummy who has had to use the emergency kit when out and about if we go shopping or out on a little trip to town.

A Emergency Flare up Guide for IBD

Important tips for emergencies when having a flare

Flare-ups are a sudden source of extreme pain for those living with Crohn’s. Flare-ups can inflame you from top to bottom with canker sores, cramps, nausea, diarrhea, anal aches, joint pain, and skin that’s sore to the touch.  Most people know what to look out for, for a start of a flare up. For myself it is aching joints, abdominal cramps and canker sores on my tongue and episcleritis of the eyes. 

Flare up triggers include consuming food or drink that upsets the stomach i.e. Hot and spicy curries, smoking tobacco, taking ibruprofen and making mistakes with medicine dosages. Stress has been shown to worsen and even prolong the misery of flare-ups.

What to pack in your emergency kit?

Remedies for Crohn’s flare-ups range from topical solutions to over-the-counter medicines.

You can survive flare-up attacks by readying a portable kit supplied with antibacterial cleanser, antiseptic mouthwash, protective ointment, non-prescription pain relief i.e. Paracetamol or Cocodamol and antidiarrheal medications, plus disposable wipes.

Here’s what to keep within reach in the event of a Crohn’s flare-up: 

·       Relieve pain such as codiene or paracetamol, and ask for alternative pain management recommendations i.e. Breathing techniques or natural pain relief (speak to your doctor first before taking natural products as some react with the Crohn's and UC medications).

·       Control bouts of diarrhea with anti-diarrheal medication, such as Imodium or Pepto-Bismol, under the guidance of your doctor.

·        Wipe away anal irritation with a soothing moist towelette rather than toilet paper, which can feel abrasive to tender skin tissue like sandpaper to wood.

·         Slather on vitamin-enriched ointments or nappy rash creams like Sudocrem for relief from anal itching.

·         For anal fissure or fistula soreness, soak the affected area in warm salt water.

·         Wash your anal area thoroughly by using a hand-held showerhead with a mild perianal cleanser.

·        Rinse and gargle with medicinal mouthwash to dilute the pain caused by canker sore ulcers. Listerine or other strong mouthwashes can do the same job without getting a prescription for medicinal mouthwashes. 

·         Apply moist heat to alleviate joint discomfort, followed by rest.

·        Consult a physotherapist about healing hurting joints with range-of-motion maneuvers.

Preventive Measures

There are preventative measures to keep in place to ensure that you stay healthy and strong. Every day, remember to exercise (but do not overdo it) and get a good night’s sleep (approximately 8hrs).  Be sure to eat a nutritious balanced diet, and take multi-vitamin/mineral supplements.  Also taking any regular medications your doctor has prescribed you for your Crohn's or UC

Don’t become a smoker, but if you already are, take steps to quit. Smoking ignites flare-ups, which can lead to serious tissue damage and even cancer (usually mouth, throat or lung). E-cigarettes are also not good for us as it cause do the same as normal cigarettes as well as popcorn lung.

Start a log to track your flare-ups by date, rate their level of intensity, and provide detailed descriptions of your symptoms along with what relief actions you took. Give a copy to your doctor to add to your file of medical records, and reserve another copy for accident and emergency visits.  This copy will come in handy as most doctors in accident and emergency departments do not have time to read your full notes (depending on if they can access them if you go to the same hospitals emergency department as you Gastro Doctor). 

Your dedicated efforts will go a long way toward lessening your stress levels and the frequency of your flare-ups.  This will take a while to manage to figure out but the efforts will go a long way and hopefully you can have a flare free time to enjoy yourself and do things you like doing like gardening or partying with friends.