Fred and me. (My Experience of Chron's Disease)

Member Name: cherwaite

Product:	My Experience of Chron's Disease
Date:	02/10/06 (3604 review reads)
Rating:

Advantages: I get to see sexy male nurses on a regular basis .

Disadvantages: Medication, Symptoms, Implications of having a chronic illness .

************WARNING THIS IS QUITE LONG***********

Firstly i would like to introduce you to Fred. Hes my crohns. I much prefer to call him Fred as it sounds more personal, as crohns is different and personal to every person who has it. Plus it sounds less scarey and more friendly.

Whom be Fred? Tell me more about him.

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Crohns is a disease. It is the inflammation of the digestive tract, this includes, the mouth, throat, small intestine, large intestine and anus. It is named Crohns after the person who discovered it Burill B Crohn, an American Physician in 1884. It is not infectious, it cant be transferred by bodily fluids. It can happen at any period in your life but is most common in teenagers and people in their early 20's. Some people have isolated attacks which last a few week, other have flare ups constantly and its a long battle to stay healthy/in remission. No one knows what causes crohns. Suggestions have been made that its a faulty immune system which attacks the digestive system thinking its a foreign body or an over-reaction to a virus or bacterium. Other possible causes are smoking, lifestyle, stress, diet -high sugar intake. There has been recent articles in the news and press suggesting that there is a MAP bug present in milk which has evidence supporting it causes crohns too. Nothing is a 100% known cause thought to date.

How does Fred present himself?

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This can vary from person to person. The most common symptoms and those that lead to my own personal diagnosis are as follows

~ Stunted Growth. Due to malabsorption of essential nutrients the patients rate of growth slows down. I look about 16 and im 24. Some say i should think im lucky! It annoys the feck out of me though.
~ Diaorrhea. Constant diaorrhea which is anything from 1-50 times a day. Nothing is kept in, not even water.
~ Aching and swollen joints. This is due to the inflammation caused the by the flare up. Particularly noticeable in the ankles, knees, elbows and wrists.
~Stomach Ache. In many of us crohnees this never goes away. You learn to live with it and dont notice it after a while.
~ Bloating. This is due to a build up of gasses made worse by the crohns. This can lead to wind problems. Lucky us!
~ Weight Loss. Due to not retaining any food.
~ Mouth Ulcers
~ Erythema nodosum. This is where skin gets red and inflammed. I got this really bad on my lower legs. It was really painful.
~Bleeding and/or Mucus in the stools. This is a textbook sign of inflammation. If the blood is bright red it is fresh, if it is dark you are best off telling your GP.
~Anal Fissures. This is a common problem. Mainly due to wiping your bottom so much and irritation caused by going to the loo.
~Constipation. This is another symptom some crohnees can experience.
~Anaemia. Due to not absorbing any iron, HB levels plummet and Iron supplements are necessary.
~General Fatigue, Lethargy.
~Poor Nail and Hair Growth, Hair loss may be experienced. At one point mine started coming out in chunks before i got diagnosed.

When did you meet Fred?

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I first started with this in 1998. Or it might even have been 1997. It was around the time i was studying for my GCSE exams at secondary school. I was 16 years old. Alot of people noticed i was getting thinner and looked extremely pale. I then started with the chronic diaorrhea. I put it down to stress at first, or even a stomach bug i had picked up but after a few weeks it was still very much apparent so i went to my local GP. At first he prescribed immodium and told me it was Gastroenteritis and to rest and drink water. But after a week i was so weak and my ankles had puffed up so i could hardly walk. This is when i got referred to the Gastroenterologist at the hospital.

What tests did you have?

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The most common test is a simple bloodtest. The indicators for Crohns disease flaring up in adults are
~ Low HB levels - Malabsorption of Iron. Normal HB rates are as follows.
Male: 13 - 18 gm/dL
Female: 12 - 16 gm/dL
~ High ESR levels - This is your estimated sedimentary rate. The higher this number is the more likely you are having a flare up. Normal ESR rates are as follows.
Male: 1 - 13 mm/hr
Female: 1 - 20 mm/hr
~ High C Reactive protein levels, this shows up any infection in the body.

At this point my HB was 6 and my ESR was 69. As you can see i was wildly off scale!

To back this up and to see in which part of your body the crohns is active i also had a barium meal. Ive had the pleasure of having 2 of these in the last 9 years and i can tell you i am in no way fond of them at all. It is a very simple procedure which takes about 30 minutes in total (if your lucky).

Firstly you change into a gown and then you are given a jug full of Barium to drink. Oh joy. This is after fasting for the previous 8 hours.Im feeling nauseous even describing this to you. The aim of the game is to swallow as much of it as you can, as fast as you can. With me this is generally two glasses before i start retching and declaring i cant go on anymore and i want to go home. Once you have got that gruesome part over its not too bad. You are told to lie beneath an X-Ray machine whilst you are directed to move in different positions to a good X-Ray can be taken and the movement of the barium throughout the intestine and rate at which it is absorbed is observed. With me this took about 10 minutes. After that i got a really bad urge to go to the loo. Then it all exploded out. I recommend you get straight into the bath when you get home and drink lots of water to get rid of the chalky taste left in your mouth by the drink. It is foul. Its like drinking glue. Im sorry i feel you should know the truth!

From this the consultant found my crohns was active in both the large and small intestine. So it definately was crohns. Yippee.

I then had to have a colonoscopy to see the extent of the damage caused by the flare up and to see if i needed surgery/what medications were advisable.

The colonoscopy is of similar entertainment to the Barium Meal. In this case though you have to drink 3 jugs full, yes i did say THREE!! of a laxative called Picolax the day or morning before the procedure. This is a challenge in itself and in my opinion is the worst bit about it. I diluted mine with ribena to get it down or i would have had no chance. It tastes vile! It certainly does the laxative trick though, you are guaranteed to run to the loo and evacuate that digestive system within hours. My bum was so sore, ouch.

I then had to go to the endoscopy ward, was clerked i, had my BP checked. Also a bloodtest was taken, probably for the hell of it, why not! I then changed into a gown and put my clothes in a basket. My mum came in with me to the room where i had the procedure done as i was so petrified. Im easily scared. I was laid on my left hand side and then i was then injected in the hand with sedation which i think was pethidine.This really relaxed me, i even found the whole situation hilarious. When you have crohns you have no shame in getting your bum out infront of a room full of nurses and doctors. KY jelly is then rubbed on your bottom, ahem, and thin tube with a small minute camera on the end is passed through your anus. The scope puffs small amounts of air into your colon to inflate it and the scope takes photos where necessary. You can watch it all on TV if you want but i closed my eyes and giggled and whinged when it hurt. A biopsy can be taken so the consultant can get it tested in the lab to check for anything dangerous. All the time you are laid there your vital signs are being checked and you have a pulse monitor on your finger. The procedure normally lasts anything from 30-60 minutes, although it doesnt feel this long and is pretty much a blur throughout.

Afterwards you are wheeled out and laid in recovery before being given toast and tea (my favourite part). At this point im so relieved its over with i almost squeal with joy, Im alive!! Once you feel fit to leave which is usually about an hour after you are sent home with a leaflet advising you of what to do and what not. You need to be accompanied home. After a good nights sleep you generally feel alot better the day after. You may experience some bleeding from the rectum but this is normal, oh and you trump alot to get rid of the excess gas which is good for comedy value.

Other tests i havent had but which are common practise are~
Endoscopy ~ Camera used on the throat and upper GI.
Ultrasound ~ This is good as no radiation is used
MRI Scan

What medication/advice were you given?

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Once the diagnosis was made i was put on prednisolone. This is a cortisteroid used to reduce inflammation. I shall go on to describe other medications later. I was put on 40mg per day which is quite a high dose. This was extremely effective put came with its side effects. I clapped on weight (about 2 stones), craved food and got very snappy. I was slowly weaned off these and put on Pentasa Tablets to try and maintain the remission. This worked for a short period. I have tried most medications in the past 9 years. If i were to tell you about everything id be typing for eternity!!

The advice i got given was to eat more healthily. This involved eating alot more green vegetables to increase my iron intake. to eat more red meat too as i didnt eat any at the time. Liver was force fed to me on occasion by my worried mother but bleurgh, its vile. Other tips i got were

~To cut down on caffeine, fizzy drinks and alcohol. Anything which is very concentrated and acidic is bad too. Especially Citrus juices.Oh and spicy foods like curry!
~Avoid high fibre foods when having a flare up as this only makes the problem worse.
~Avoid refined sugar.
~Dont drink alot of tea as the tannin in it can reduce the intake of iron between meals.
~Not to smoke, i didnt smoke anyway but smoking can make crohns worse statistics say.
~To de-stress. Im such a worrier so this was hard for me. Relaxation does help alot. I recommend listening to relaxation tapes to anyone with crohns just to chill out and escape from it all.
~To exercise more. Apparently this is good for us crohnees. The release of endorphins cant hurt and the feeling of well being is good for us. It helps build up our immune system too.
~ Aloe vera capsules and liquid. These have soothing qualities and are available from most chemists for around £5. They did little to help me but they can help others i have heard.
~ Peppermint tea. This again is soothing and i love it!
~ Doing a food diary. Writing down what you eat and how your body reacts can be so helpful in finding out what foods to avoid. Do this everyday for a month so you can track a pattern.
~ Cutting down on dairy products. I have been drinking Soya Milk for about 2 years now and it has done me a world of good. I recommend it to any crohnee i speak to.
~ Join NACC. This is a special support group for people with IBD which produces a newsletter and has special support phone lines if ever you need advice regarding medication, benefits etc etc. See www.nacc.co.uk.. The work they do on fund raising and raising public profile of crohns is amazing!

What other Medications are out there for people with Crohns?

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These fall into 2 main groups.

Anti Inflammatory Treatment.

As mentioned above i was put on prednisolone. This is a corti-co steroid. Not like the stuff some body builders pop. This is used for any inflammatory illness, ie arthiritis for example.
These are used for short periods as they are dangerous for the body for any longer period. The body has to be slowly weaned off them. Withdrawing corticosteroids too quickly can produce symptoms of joint pain, fever, and malaise.
Side effects of these steroids were unpleasant. I experienced Acne, Weight Gain, Insomnia, Mood Swings, Irritability, Hightened sensitiviy to stress which made my anxiety worse, Mooning of the face (this is where you put weight on and your face goes moon like round, a classic pred head sign!), higher blood pressure and thinning of the bones. I was put on a calcium supplement called Calcichew and another 1 tablet a week medication called Actinel after a heel scan showed i had Osteoperosis caused by steroid use.

Thankfully i have been steroid free for 1 and a half years now! This is the longest period i have ever been steroid free so im very happy and quite normal looking at the moment yey.

Other anti inflammatories given are-

Budesonide - Like prednisolone but less potency and less side effects
Anti-Biotics
5-ASA Compounds -Pentasa, Asacol, Dipentum, Colazal, Rowasa enema, Canasa suppository. These target the inflammed tissue directly but have been of little help to me unfortunately.

The other type of medication commonly used in Crohns are Immuno-Modulator Medications.

I have have better success with these medications for some unknown reason. They target the immuno system by repressing it. They use these in transplant patients as bodies get used to new organs and to protect them from any bugs. Unfortunately for crohns patients the only disadvantage is this leaves you wide open to anything as your WBC (white blood cell count) is depleted so weekly bloodtests are necessary sometimes to make sure you dont fall to dangerous levels. Like i did about 3 months ago! Eeeeep it was sticky for a while.

The tablets on offer are

Methotrexate- I had this for a period of 1 year. First weekly injections and then oral tablets. It did not sustain remission and i had really bad nausea. This is a chemotherapy drug.

Infliximab - Given by IV drip in a day case ward this worked wonders for me but unfortunately there was a mix up and i didnt have the right number of infusions. The doctor left it too long and now i cant have it again. So peeved about that. Its very strong stuff this so you have to be observed carefully throughout the infusion which takes about 2 hours in total. It works by reducing the amount of active TNF. That is all i know, dont ask me what TNF is. This is quite a super drug and is very expensive so you are only given this if your crohns is getting to operative stage and as a steroid sparing drug.

6 M-P- Im on this now and its my saviour, im on 25mg per day at the moment and in remission. I love my consultant and i love 6mp \o/ The side effects are worth putting up with. Im so happy to feel healthy.

The other option i havent discussed is the Elemental Diet. Otherwise known as the liquid diet. This has an 84% remission rate in patients so was worth a shot. I was on the elemental diet for 5 months in total about a year and half ago. Its not the cheeriest or most social of diets.. given the fact you cant eat anything at all, whatsoever, nada. Once you get over this fact and prepare yourself psychologically its not as bad as it sounds. No stay with me, really. I was dreading this but when it came to coming off it i got quite upset! I was addicted to the stuff. Let me tell you more about it.

The elemental diet is basically cartons of drinks like the size of your basic ribena carton. You have to drink about 12 cartons a day but this can vary on your body weight. Inside is a drink, these come in 3 different flavours.

Summer fruits - My favourite! I love this stuff. I used to gulp it down like a mad woman.Its the fruitiest sweetest concoction you have ever tried. At first i thought, bleurgh its like car oil. But after my first carton i was hooked. I think its because it tasted so sugary.
Grapefruit - Vile. Cannot stand it. The smell is vomit inducing.
Orange- My second favourite, not the nicest orange your ever likely to taste. But bareable. Drunk fast it does the trick.

Inside the drink is every vitamin, mineral, essential and fat your body needs. I didnt lost any weight whatsoever. This fact astounds me. I didnt eat a crumb for 5 months and i stayed the same! For the first two days i had to stay in a ward to be assessed with my reaction to it. I know some people cant tolerate it. My consultant says 'Your the first person i know to become addicted to the elemental diet'. At times i felt a bit dizzy and at times i craved meat. But i stuck to it rigidly. I made a calendar and put little stars on for every day i stuck to the diet successfully. It was my own little project.

Unfortunately about 3 months after i came off it i flared up again. GROAN! But i dont regret trying it, it spared me being on steroids and i couldnt say 'what if?' could i?

What about pain relief in crohns?

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I recommend Panadol Plus. This is gentle on the stomach and dissolveable so its very fast acting. The only trouble is, its slightly addictive so ive had to cut down on this! Cocodamol is also good. But my GP recommends sticking to Paracetomol. The problem with painkillers is they are not treating the underlying cause of crohns and taking them regularly could lead to other complications. I know around the time of my period my symptoms get worse ten fold so i try and limit myself to taking painkillers at that time of month only.

It is best to visit your GP to ask about pain relief than go to any over the counter chemist as they know the contra-indications that can affect you if your on other tablets plus they know your medicinal history.

God you can go on.. What about surgery is that an option?

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Thankfully i havent got to this stage but it is a possibilty i will have to have surgery at some point. Most crohns patients have 2 operations in their life i once read somewhere. So thats something to look forward to.

Surgery options are

Resection - The inflammed area of the colon is cut out which as much of it saved as possible.There is a risk of perforation when this is performed. If all the colon is removed a Stoma is will be necessary which is an opening in the abdomen where waste is eliminated.

Ileorectostomy - This is when the colon is removed and the small intestine is joined to the nondiseased rectum.

Proctocolectomy - The removal of the colon and rectum. After removal, an end-ileostomy (opening in the lower abdomen) is created.

Sometimes the inflammation makes the intestine opening narrow so it makes food difficult to pass through, a Stricture Plasty is necessary this widens the colon.

Other operations can be performed if bad absesses or fistulas have formed on patients too.

Is pregnancy okay for women with crohns?

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Pregnancy is safe in crohns patients, but not advisable if your on immuno suppressant tablets. A period of 6 months tablet free is usually recommended. A close eye will be kept on babies growth too. There is no risk of passing on crohns to your unborn child. There is some evidence shown that crohns is genetic but it has not been proven.

Summing me and Fred up.

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Despite all the crap (groan) crohns brings it is entirely possible to live a normal happy life with it. Its just a bit of a rollercoaster. Sometimes it can get you down believe me, but soon you face up to it. Life can be changed around having crohns. Travelling can be difficult, routes have to be planned carefully. Sometimes you have to miss on nights out, but other times you can be up on that table partying with your friends. You certaintly realise who your friends are when you have crohns. This is something positive that comes out of the whole thing. You realise how precious being healthy is. You dont take it for granted at all. Just going a day without grumbling once about being in pain is a big achievement for me. The life expectancy of a crohn is just the same as your average Joe. Yeah for sure its not nice, talking about your bum, pooping and talking about the texture, smell and frequency of your poo but hey its got to be done.

Embrace the Fred within and you will be free!


Copyright cherwaite 2006 xx

Summary: Its spelt Crohns!!!